I cant believe its July already, this summer in flying by as every summer does.We have been so very busy,with big and little stuff.And were fixing to leave on family vacation with the Mullets after that,the kids and I will be going on down to Sarasota to spend a week or so with my parents.Like I said busy busy:)
I wanted to update because allot of people have been asking me about Hayden and how shes doing.Its been almost 2 months since we seen the doctor and got the news that the infection is back,when we left that appointment the dr said she wouldn't see her again until September when we will schedule surgery .They had hoped it would grow over the summer so it would make it more likely and easier for the surgeon to get ALL the infection out..well it hasn't been doing much growing,and im not sure if that's a good thing or a bad thing...I can feel the node in her neck,some days its easier to find other days I have to feel around a bit.But its not popping out and obvious like it has been in the past.Soo were not sure what that means.From what she said,and what I understood ,as long as its in there we will be doing surgery , if it doesn't grow it just makes surgery a little more challenging as far as getting it all out and working around nerves etc.
A few weeks ago-we were all out on the trampoline out back and Hayden was talking to herself as she jumped around Matt and I and we heard her say "and Jesus healed my body" Our eyes got big and Matt looked at me and said "well there you go":) Ive had a had time having faith that she will be healed,i guess cause I haven't really felt like God has given me that,but also because we had faith last spring that this would all go away and when it didn't,it was devastating.Its a tough place to be in..but yesterday I found myself at the alter crying tears that were waiting to come out for a while.And asking God for wisdom,because from the beginning of this all happening I have had one clear message from Him, "im going to use this as part of your ministry,just trust me." Yesterday as a friend prayed over me she said "healing can look different then what we think it will look like" So i continue giving this to God,asking Him to heal her if its His will,if its not the healing we so desire,then help us endure this hard waiting.I believe,with all my heart,that this season we are walking in,God is in control,i know He doesn't like to see us hurt,i know he doesn't like to see us cry but i also know He uses hard situations in our life to make us beautiful,to depend on Him and Him alone,to bring Him glory,if only we are willing. The sweet friend who prayed over me gave me this picture "i see you as a mirrow,that's been broken on the ground,and Jesus is putting all the pieces back together and putting it in a frame.Its going to be beautiful"
I opened my Jesus calling devotional again this morning and seen a devotional i read a year ago tomorrow.. and i just got tears, a year...a whole year . Sometimes the dessert can last so long,we can become to weary,and in that place,the smallest thing seem so hard.But God in all His loving kindess and gentleness...carries us on His shoulders Gives us strength and grants us peace,if we stay focused on Him,if we can only trust Him.
We are growing,we are being strengthened,even if it doesn't feel like it now,i know we'll look back in years to come and think "that was the time God changed us,He brought "this"(whatever this may be) out of that..isn't it awesome?!"
We still have about 2 months till we see the doctor again,allot can change in two months,but my prayer is that either this thing will grow the way the doctors want it to,or that if its Gods will ,she will be healed.Either way,i continue praying that God will give us peace as we wait, its been so hard to wait(its definitely not my area of expertise:))and not know whats really going on in her body.But God has been helping me in that.To be patient and as much as my flesh wants to,to not worry about it.
"Im not longer a slave to fear,I am a child of God"
Monday, July 13, 2015
Wednesday, May 27, 2015
Accepting the hard stuff
"When the boat is tossed upon the waves
When I wonder if you'll keep me safe
Even in the storms I'll follow you, even in the storms I'll follow you
I believe everything that you say you are
I believe that I have seen your unchanging heart
In the good things and in the hardest part
I believe and I will follow you"(I will follow -Jon Guerra)
Ive wanted to write so many times over the past week but everytime I try I just didn't feel ready...Last week was maybe the roughest week ive ever had..and it's carried into this week although this week feels more bearable then last..
Crystal left last week-I didn't know just how hard that would be...I miss her already.I didn't know just how hard it would be to see her go and to carry on without her around.I know im so blessed to have a friend like her and I pray our friendship never changes.
All of this has been so hard for me to accept..i feel like ive had to process the news about Hayden so much.And everytime I would get to the point of thinking "its ok,its no big deal,we can do this again.." I would then think.."i just cant believe this!Were doing this again!!" and I'd go back to feeling so disappointed,so let down and so upset. My parents couldn't have came at a better time then they did...the weekend after we found out about Hayden my parents came up for the weekend,and it was such a wonderful time.I cried on my moms shoulder for only the ten thousandth time in my life.And she left me cry and continuously reminded me that its ok for me to be sad but at some point soonim going to need to snap out of it:)(that's my mom for you)They left on sunday morning and I was debating going to church or not,i knew if id go id be a mess,but I also knew if id stay home id feel worse,so we went and as we sang the tears wouldn't stop flowing,and then they announced they were going to be having a prayer of blessing over Regan and Crystal before they left,i looked at my husband ,the redness in my eyes along with tears still flowing,telling him ive been crying for a good 5 minutes already and I said with a half grin"that is such a bad idea for me right now" We laughed and went and surrounded the couple that have been two of our biggest encouragers ,supporters and closest friends over the past 5 years..and there were so many more tears.The next week I felt so down in a way that I think I scared myself(and possibly my husband to a little) The good thing about my personality and when I walk through hard times is I cant keep it in,so id call my sister or mom,sobbing ,upset and discouraged and I would let it all out..right when I thought "maybe this is just me now,maybe im just going to be this sad person all the time" I received a card in the mail from some of my hometown friends back in pa..the card was filled with giftcards to some of my favorite places and a letter of encouragement...two days later I got a delivery to my door,a beautiful boquet of my favorite flowers from my sister..and slowly,i felt my spirit being lifted..up until then I found it so hard to pray. all I could say was "why"...I couldn't say the words I knew I needed to say "I surrender" isn't it funny how we know..we know what we need to do or tell the Lord that will make us feel so at rest..yet we cant get the words out..Sunday the preacher preached a message that just moved me...and as much as I felt like nothing he was going to say was going to "get me"..it did...as he spoke I heard.." Imagine your like an airplane..coming in for landing...and your all ready to land but God says no , not yet,because he sees down on the runway theres other planes blocking it..so you just keep circleing,and circleing waiting for God to tell you,"ok its time"..Just.Keep.Circleing. Don't give up" and I cried again...
I know God has asked us to walk through this..I know He has something beautiful that is going to come out of this all..Trusting him and surrendering is hard,But I know who He is,i know what He has promised and I know He is making a way .So we just keep circleing.
Music is something that always has and always will minister to me more then anything,and the song at the beginning of this post is one of those..the words,are just so powerful.
Hayden is doing well...the week after we were at the doctor and found out the news,it was interesting to me to hear the little things she said and did that made me think "she knows exactly whats going on..she told mom that shes going to the hospital and wanted mimi to come with ..(I did not tell her that,she must have overheard the doctor)Shes been extremely needy with me since then as well,a few days she would scream and cry when I would I would walk out of her site,although that has gotten a little better.ITs just crazy to me how much she understands..
Her id doctor has been so wonderful to us,we don't have any scheduled appointments over the summer.She knows that we have to pay out of our own pocket for doctor visits(which is quite exspensive) and she has been so good with us as to try to keep our appointments to a minimum.However with that comes allot of responsibility on our part..watching the node,measuring it as it grows and when it gets big making sure it don't get to the point of bursting.So every night when she goes to bed we check it,measuring it with my finger and trying to figure out if its grown and how much.A part of me would just like to take her to the doctor every now and again cause its so hard for me to tell,although last night when checking it I did feel it was bigger and as much as I hate that I also felt good that I could actually tell it was bigger.Its not popping out yet(except for certain ways she turns her head)Im waiting on a call from the doctor now,shes been having gunk coming out of her eyes and this morning around her eyes were really dark,i don't think its anything to worry about but given her history the doctor has told us if she gets sick or anything changes with her health to let them know(which is so hard to discern)
Were heading out to the beach this weekend and are so excited for a little get away with the kids(of course Matt will be playing ball,but that just makes it all the more fun:))
Thank you all for being so caring,for the continuous prayers and support we love you all!
UPDATE: around lunch time today Hayden started crying like she was in pain and grabbing her ear,after finally getting a hold of her doctor they wanted me to take her to a peds right away,We did and it turns out she has pink eye along with a really bad ear infection(this is on the opposite side then her lymph node infection) She has some swollen nodes on the side of her ear infection now,but that is to be expected and the peds said is nothing to worry about.So they are putting her on antibiotics(again!)for her ear infection and hopefully get it cleared right up.
When I wonder if you'll keep me safe
Even in the storms I'll follow you, even in the storms I'll follow you
I believe everything that you say you are
I believe that I have seen your unchanging heart
In the good things and in the hardest part
I believe and I will follow you"(I will follow -Jon Guerra)
Ive wanted to write so many times over the past week but everytime I try I just didn't feel ready...Last week was maybe the roughest week ive ever had..and it's carried into this week although this week feels more bearable then last..
Crystal left last week-I didn't know just how hard that would be...I miss her already.I didn't know just how hard it would be to see her go and to carry on without her around.I know im so blessed to have a friend like her and I pray our friendship never changes.
All of this has been so hard for me to accept..i feel like ive had to process the news about Hayden so much.And everytime I would get to the point of thinking "its ok,its no big deal,we can do this again.." I would then think.."i just cant believe this!Were doing this again!!" and I'd go back to feeling so disappointed,so let down and so upset. My parents couldn't have came at a better time then they did...the weekend after we found out about Hayden my parents came up for the weekend,and it was such a wonderful time.I cried on my moms shoulder for only the ten thousandth time in my life.And she left me cry and continuously reminded me that its ok for me to be sad but at some point soonim going to need to snap out of it:)(that's my mom for you)They left on sunday morning and I was debating going to church or not,i knew if id go id be a mess,but I also knew if id stay home id feel worse,so we went and as we sang the tears wouldn't stop flowing,and then they announced they were going to be having a prayer of blessing over Regan and Crystal before they left,i looked at my husband ,the redness in my eyes along with tears still flowing,telling him ive been crying for a good 5 minutes already and I said with a half grin"that is such a bad idea for me right now" We laughed and went and surrounded the couple that have been two of our biggest encouragers ,supporters and closest friends over the past 5 years..and there were so many more tears.The next week I felt so down in a way that I think I scared myself(and possibly my husband to a little) The good thing about my personality and when I walk through hard times is I cant keep it in,so id call my sister or mom,sobbing ,upset and discouraged and I would let it all out..right when I thought "maybe this is just me now,maybe im just going to be this sad person all the time" I received a card in the mail from some of my hometown friends back in pa..the card was filled with giftcards to some of my favorite places and a letter of encouragement...two days later I got a delivery to my door,a beautiful boquet of my favorite flowers from my sister..and slowly,i felt my spirit being lifted..up until then I found it so hard to pray. all I could say was "why"...I couldn't say the words I knew I needed to say "I surrender" isn't it funny how we know..we know what we need to do or tell the Lord that will make us feel so at rest..yet we cant get the words out..Sunday the preacher preached a message that just moved me...and as much as I felt like nothing he was going to say was going to "get me"..it did...as he spoke I heard.." Imagine your like an airplane..coming in for landing...and your all ready to land but God says no , not yet,because he sees down on the runway theres other planes blocking it..so you just keep circleing,and circleing waiting for God to tell you,"ok its time"..Just.Keep.Circleing. Don't give up" and I cried again...
I know God has asked us to walk through this..I know He has something beautiful that is going to come out of this all..Trusting him and surrendering is hard,But I know who He is,i know what He has promised and I know He is making a way .So we just keep circleing.
Music is something that always has and always will minister to me more then anything,and the song at the beginning of this post is one of those..the words,are just so powerful.
Hayden is doing well...the week after we were at the doctor and found out the news,it was interesting to me to hear the little things she said and did that made me think "she knows exactly whats going on..she told mom that shes going to the hospital and wanted mimi to come with ..(I did not tell her that,she must have overheard the doctor)Shes been extremely needy with me since then as well,a few days she would scream and cry when I would I would walk out of her site,although that has gotten a little better.ITs just crazy to me how much she understands..
Her id doctor has been so wonderful to us,we don't have any scheduled appointments over the summer.She knows that we have to pay out of our own pocket for doctor visits(which is quite exspensive) and she has been so good with us as to try to keep our appointments to a minimum.However with that comes allot of responsibility on our part..watching the node,measuring it as it grows and when it gets big making sure it don't get to the point of bursting.So every night when she goes to bed we check it,measuring it with my finger and trying to figure out if its grown and how much.A part of me would just like to take her to the doctor every now and again cause its so hard for me to tell,although last night when checking it I did feel it was bigger and as much as I hate that I also felt good that I could actually tell it was bigger.Its not popping out yet(except for certain ways she turns her head)Im waiting on a call from the doctor now,shes been having gunk coming out of her eyes and this morning around her eyes were really dark,i don't think its anything to worry about but given her history the doctor has told us if she gets sick or anything changes with her health to let them know(which is so hard to discern)
Were heading out to the beach this weekend and are so excited for a little get away with the kids(of course Matt will be playing ball,but that just makes it all the more fun:))
Thank you all for being so caring,for the continuous prayers and support we love you all!
UPDATE: around lunch time today Hayden started crying like she was in pain and grabbing her ear,after finally getting a hold of her doctor they wanted me to take her to a peds right away,We did and it turns out she has pink eye along with a really bad ear infection(this is on the opposite side then her lymph node infection) She has some swollen nodes on the side of her ear infection now,but that is to be expected and the peds said is nothing to worry about.So they are putting her on antibiotics(again!)for her ear infection and hopefully get it cleared right up.
Tuesday, May 12, 2015
Back to the beginning...
Ive been thinking all afternoon how I would start this blog post...and I still don't quite know how...
Today was a long day-We had 2 doctor appointments today,one at 10 and one at 230.Im so thankful for my closest friend Crystal who once again went with me and made this day fun for me.And this little girl-is just so good at doctor appointments...
We met with dr abrams first,if you read my last post you know,that today was supposed to be the end of all this..we were going to find out for sure about doing reconstructive surgery but were thinking that we weren't going to do that at this point(wait until shes older and if the scar bothered her,then we'd do the surgeryToday was also the day to make sure that everything was still looking good since she went off her meds.Today was going to be an exciting day,with lots of good news..But...Dr Abrams nurse came in and and felt around and said" I think I feel another node.."i jumped in and said"oh no I think that's just scar tissue in there" she didn't say much,so I thought she agreed with me.Dr Abrams came in and after feeling it as well he said the same thing..i didn't ask to many questions..he just said he definitely didn't want to go in there before September(I was assuming he meant for the reconstructive surgery)and that well wait and see him again then..He also informed me that he is planning on retiring soon after that,so if we do another surgery we want to do it before he quits. We left there and I still felt...upbeat:)
Crystal and I had such a fun afternoon..She has been a friend like none other to me over the past 5 years..shes more like a sister to me.We have the deepest of conversations and can say things to each other that no-one else could.We understand each other,we have allot of respect for each other,and even though there are things we disagree on,we respect each other in those things as well. We pray together over the smallest things and the biggest things.We laugh about the silly ways we do stuff and how long it takes her to get ready.We encourage each other in standing behind our husbands and we lift each other up when one if feeling down...But God is calling her and her family to Michigan...and it breaks my heart,a million times to know that in a little over a week we will be saying "see you later" because goodbye is just to hard and to sad of a word to say.Our boys are best friends and have grown up side by side since they were born.My heart aches thinking about seeing them give that goodbye hug.I know it will be harder on me then it is on them.So today,was extra special,special that she put her packing aside and came with me to doctor appointments that she knew I don't like to do alone.And after the news we got im just so thankful that she was with me,to listen to me talk out my raw emotions on the way home,to tell me its ok feeling like I was,and to pray with me that I feel peace...
The next appointment was with the ID doctor...And as soon as she came in,Hayden was looking up at her and she said with a frown.."i see it" She felt around and said "The infection is back"..It seems as though it never left,we thought it did when we were in 3 weeks ago-but at that time,Hayden was still on meds,today she had been off of them for a week( or 2 I cant remember how long its been) and the doctor thinks that the meds just suppressed the infection and now that she's off, its flaring up again.I bombarded her with questions "Why?! What are we going to do?Is this going to keep coming back?!! WHY!" And I had to be honest with her,5 days after Hayden was off her meds,i was feeling her neck just to be sure and I told Matt "im sure im just being paranoid,but I feel like its thick!" But of course I didn't want to believe it. So,since the meds only suppress the infection and don't actually take care of it,were not putting her back on meds.Both doctors want to wait ,hopefully until September to do yet another surgery to remove the infection,again. I asked her why we cant just do the surgery now and get it over with and she said,that she actuall feels about 3 infected nodes in there,with it being in the neck and there being so many scary areas in there to operate,we want to let these nodes get as big as they can without the area bursting,that was whatever infection is in there,will show itself so when he goes in to get it out,its "ripe for the picking" and he wont have to dig around .So the longer we wait the less chance there will be of him having to go in more then one more time..if he went in now,theres a good chance,that there would be more in there that he couldn't get to,and a few months later we'd have it flare up again.Oh Lord!(((deep breaths)))So we will be having another summer of watching her neck grow and waiting.I was so ready to move on,so ready to feel like we are all healthy and can go on with life...but it seems were not there yet.Right after the appointment I just prayed"Ok Lord,what is it?!What are you trying to teach me here?What am I not getting?!"...He hasn't answered yet:) Laying in bed with Hayden tonight I teared up...thinking about all that's to come..all over again.But I also feel like if we got this news 3 months ago-I probably would have fallen apart,i was at a rough place,and I felt so weak...I feel like God gave me the past couple months to strengthen me again....to make me ready..so here I am Lord-
Strong and ready...although we all know,that aint my strength...
"My help comes from You"
Today was a long day-We had 2 doctor appointments today,one at 10 and one at 230.Im so thankful for my closest friend Crystal who once again went with me and made this day fun for me.And this little girl-is just so good at doctor appointments...
We met with dr abrams first,if you read my last post you know,that today was supposed to be the end of all this..we were going to find out for sure about doing reconstructive surgery but were thinking that we weren't going to do that at this point(wait until shes older and if the scar bothered her,then we'd do the surgeryToday was also the day to make sure that everything was still looking good since she went off her meds.Today was going to be an exciting day,with lots of good news..But...Dr Abrams nurse came in and and felt around and said" I think I feel another node.."i jumped in and said"oh no I think that's just scar tissue in there" she didn't say much,so I thought she agreed with me.Dr Abrams came in and after feeling it as well he said the same thing..i didn't ask to many questions..he just said he definitely didn't want to go in there before September(I was assuming he meant for the reconstructive surgery)and that well wait and see him again then..He also informed me that he is planning on retiring soon after that,so if we do another surgery we want to do it before he quits. We left there and I still felt...upbeat:)
Crystal and I had such a fun afternoon..She has been a friend like none other to me over the past 5 years..shes more like a sister to me.We have the deepest of conversations and can say things to each other that no-one else could.We understand each other,we have allot of respect for each other,and even though there are things we disagree on,we respect each other in those things as well. We pray together over the smallest things and the biggest things.We laugh about the silly ways we do stuff and how long it takes her to get ready.We encourage each other in standing behind our husbands and we lift each other up when one if feeling down...But God is calling her and her family to Michigan...and it breaks my heart,a million times to know that in a little over a week we will be saying "see you later" because goodbye is just to hard and to sad of a word to say.Our boys are best friends and have grown up side by side since they were born.My heart aches thinking about seeing them give that goodbye hug.I know it will be harder on me then it is on them.So today,was extra special,special that she put her packing aside and came with me to doctor appointments that she knew I don't like to do alone.And after the news we got im just so thankful that she was with me,to listen to me talk out my raw emotions on the way home,to tell me its ok feeling like I was,and to pray with me that I feel peace...
The next appointment was with the ID doctor...And as soon as she came in,Hayden was looking up at her and she said with a frown.."i see it" She felt around and said "The infection is back"..It seems as though it never left,we thought it did when we were in 3 weeks ago-but at that time,Hayden was still on meds,today she had been off of them for a week( or 2 I cant remember how long its been) and the doctor thinks that the meds just suppressed the infection and now that she's off, its flaring up again.I bombarded her with questions "Why?! What are we going to do?Is this going to keep coming back?!! WHY!" And I had to be honest with her,5 days after Hayden was off her meds,i was feeling her neck just to be sure and I told Matt "im sure im just being paranoid,but I feel like its thick!" But of course I didn't want to believe it. So,since the meds only suppress the infection and don't actually take care of it,were not putting her back on meds.Both doctors want to wait ,hopefully until September to do yet another surgery to remove the infection,again. I asked her why we cant just do the surgery now and get it over with and she said,that she actuall feels about 3 infected nodes in there,with it being in the neck and there being so many scary areas in there to operate,we want to let these nodes get as big as they can without the area bursting,that was whatever infection is in there,will show itself so when he goes in to get it out,its "ripe for the picking" and he wont have to dig around .So the longer we wait the less chance there will be of him having to go in more then one more time..if he went in now,theres a good chance,that there would be more in there that he couldn't get to,and a few months later we'd have it flare up again.Oh Lord!(((deep breaths)))So we will be having another summer of watching her neck grow and waiting.I was so ready to move on,so ready to feel like we are all healthy and can go on with life...but it seems were not there yet.Right after the appointment I just prayed"Ok Lord,what is it?!What are you trying to teach me here?What am I not getting?!"...He hasn't answered yet:) Laying in bed with Hayden tonight I teared up...thinking about all that's to come..all over again.But I also feel like if we got this news 3 months ago-I probably would have fallen apart,i was at a rough place,and I felt so weak...I feel like God gave me the past couple months to strengthen me again....to make me ready..so here I am Lord-
Strong and ready...although we all know,that aint my strength...
"My help comes from You"
Wednesday, May 6, 2015
The end is in sight...
Let your roots grow down into him and draw up nourishment from him.See the you go on growing in the Lord, and become strong and vigorous in the truth you were taught.Let you lives overflow with joy and thanksgiving for all He has done. Colossians 2:7
Looking back over the past year-I have so much gratitude...to everyone who supported us,to our families who listened and encouraged us,to our friends who did small and big things to keep up light,but mostly to God for carrying us through our hardest year yet.Today-today I am grateful,so very grateful,that Haydens treatment is done!!2 weeks ago we met with the infectious disease doctor and she wanted us to do 2 more weeks of treatment,those 2 weeks ended on Monday and let me just tell you the joy there was giving Hayden her LAST 3 and a half cc's of that awful tasting white stuff.But so far my mind hasn't forgot-10 am rolls around and I catch myself going to get the meds.:)I was worried that going off her meds after being on them for a year that she would go through withdraw...but so far I haven't noticed anything.And she seems to be doing really well!
Its funny-the one thing i've been telling my mom is that I just cant wait for our lives to feel back to normal...but then I wondered,am I even going to think about it when it is..but yesterday as I was sitting outside with the kids watching them play I remembered about a year ago-(granted Haydens neck looked awful at the time,but since the doctor we were seeing didn't seem to concerned we were trusting him ) and life was normal,we had no idea what was about to happen...but we were happy-and having a fun normal day..yesterday,kinda felt like that,i looked at Hayden and though,"shes healthy!!"Thank you Jesus!!
We have one more little hump:) Tuesday will be a big day for us,Hayden is meeting with both the surgeon and the infectious disease doctor. At the ID doctor we will just be doing kind of a final appointment and making sure that everything still looks normal since she is off her meds.We will also be talking about how many more appointments she will need to attend..i know I said this is the final one but kinda,not really:)Earlier she had mentioned that for a year after shes off her meds-she will still want to see her every 3-6 months just to make sure it doesn't return..i don't know if she still wants to do that or not since I know she was very happy with the length of time we did treatment . Then the surgeon...Haydens scar looks really good-its still very noticeable when her hair is up,but it looks really good considering it went from this
to this
Where the big open hole once was,still kinda looks like a hole.especialyl certain ways she turns her head,it looks kinda crazy.but the surgeon has been soo hapy with how the scar looks and always says"she makes me look good" That being said-on this picture you cant see it so well-but on the front scar theres a little dot,that has been a scab,over the past 2 weeks it has looked the best its looked since surgery,but its still there-the Id doctors main concern on this is that it may be residual disease,if it is that, there is a POSSIBILITY (could happen,could not happen) that it could pop back up.The surgeon doesn't seem as concerned about it as the id doctor(who isn't crazy concerned either,but just does not want to see this come back in any way.Im with her on that:)) Out meeting with the surgeon on Tuesday will be to discuss doing a reconstructive surgery,where he would go in and make the scar look better and not so noticeable.We were thinking were not going to do that,however,the id doctor did say,if this is residual disease,then while he does the reconstructive surgery-he could also clean out any residual that was left in there,and the chances of this coming back are lessen IF he finds anything..so thinking that way,were feeling like we will do the surgery.But Im really eager to hear what he (the surgeon)has to say-last time we spoke he said she may not even need the reconstructive surgery-but we will wait till our may meeting to see how its looking.(If the scab is gone,we have nothing to worry about.)That is on Tuesday.hopefully that was understandable for everyone:) I will write again after Tuesday when we decide what well be doing.
Again THANK YOU for all your prayers over the past year and still-Looking back,I know we were carried!
Looking back over the past year-I have so much gratitude...to everyone who supported us,to our families who listened and encouraged us,to our friends who did small and big things to keep up light,but mostly to God for carrying us through our hardest year yet.Today-today I am grateful,so very grateful,that Haydens treatment is done!!2 weeks ago we met with the infectious disease doctor and she wanted us to do 2 more weeks of treatment,those 2 weeks ended on Monday and let me just tell you the joy there was giving Hayden her LAST 3 and a half cc's of that awful tasting white stuff.But so far my mind hasn't forgot-10 am rolls around and I catch myself going to get the meds.:)I was worried that going off her meds after being on them for a year that she would go through withdraw...but so far I haven't noticed anything.And she seems to be doing really well!
Its funny-the one thing i've been telling my mom is that I just cant wait for our lives to feel back to normal...but then I wondered,am I even going to think about it when it is..but yesterday as I was sitting outside with the kids watching them play I remembered about a year ago-(granted Haydens neck looked awful at the time,but since the doctor we were seeing didn't seem to concerned we were trusting him ) and life was normal,we had no idea what was about to happen...but we were happy-and having a fun normal day..yesterday,kinda felt like that,i looked at Hayden and though,"shes healthy!!"Thank you Jesus!!
We have one more little hump:) Tuesday will be a big day for us,Hayden is meeting with both the surgeon and the infectious disease doctor. At the ID doctor we will just be doing kind of a final appointment and making sure that everything still looks normal since she is off her meds.We will also be talking about how many more appointments she will need to attend..i know I said this is the final one but kinda,not really:)Earlier she had mentioned that for a year after shes off her meds-she will still want to see her every 3-6 months just to make sure it doesn't return..i don't know if she still wants to do that or not since I know she was very happy with the length of time we did treatment . Then the surgeon...Haydens scar looks really good-its still very noticeable when her hair is up,but it looks really good considering it went from this
to this(taken today)
Again THANK YOU for all your prayers over the past year and still-Looking back,I know we were carried!
Friday, April 10, 2015
Circumstances...
Im overwhelmed..this morning I woke up,sweating hot and after the worst night of sleep I may ever have..our air gave out yesterday.Anyone that knows us,knows we like a cold house:) So we were pretty miserable.We prayed and prayed last evening,that the air would miraculously be fixed..we tried not to talk about another "knock down " and tried not to complain...and this morning I woke up at 6 cause the birds were chirping so loudly out our open bedroom window and cause I just couldn't sleep ,and instead of feeling upset,knocked down,frusrated with another "thing" I just felt overwhelmed..not in a bad way.In a way like ..I know the maker of the wind.Thats the song I turned on...When im broken and you remind me that you have overcome it all...He's so good.My circumstances change,He never does,that's what I felt this morning,my circumstances have changed since yesterday,but He hasn't.The talk I had with Him yesterday,about my love for Him and His love for me...that remains.That hasn't changed..He's so good. Yesterday I sang at a funeral,my heart breaking as I stood facing a family with tears streaming down their face as they said goodbye to the women who raised them..Their circumstances have changed dramatically in the past couple days...My Jesus has not.No matter what im going through,no matter how far away I think He feels...He has not moved from the time I felt Him right next to me...Im the one whose moved.
So today...Im overwhelmed..with His presence..His grace..I'm overwhelmed.Because He is so good.No matter what.
So today...Im overwhelmed..with His presence..His grace..I'm overwhelmed.Because He is so good.No matter what.
Friday, March 27, 2015
Prayers and answers...
..And i will call upon your name, and keep my eyes above the waves.When oceans rise my soul will rest in your embrace..For I am YOURS and YOU are mine.
Those words have hit me hard the past week. I just have to blog about the prayers God has been answering...The way He is moving so evidently in our lives! God is so good!
Last week I was having such a rough week. I had to re-fill Haydens meds..again. I cant explain to you the the dark cloud that I feel follows me into the pharmacy everytime I go.Ive gotten to know the pharmacists in there and they always ask how she's doing,what are the doctors saying by now..and its always the same thing.. oh just same old you know.And then she rings me up, Her meds aren't that exspensive and God has always provided for us in that,and for that im grateful..anyways ,last week.(me and my bunny trails) We've been talking about moving ,for a while now,but we'd really like to do that by next year..we have work to do on our house before we can sell so we are constanly trying to figure out how we can do this,when we should do that..and for me that stresses me a bit.Ok kinda allot.It looks sooo huge to me and when I think of all we have to do I feel like ill just drown. Thursday night on the way home from revival meetings at our church,our vehichle started acting weird and we could barely make it home.So Friday the mechanic took it in thinkin it was just a pipe that needed to be changed,We borrowed our brother in laws van till ours was fixed.Friday I sat down to have my devotions,a very tired,stressed me. And I started praying,crying out to God to please take some of this load off. In the middle of my prayer I just stopped and said "God do you even hear me ?!" And that was that.Saturday evening Matt was going to church and couldn't find his wallet...he searched frantically but it didn't turn up..so he went off to church hopeing I would find it while he was gone.When he got home is said I I hadn't found it so he kept looking and then informed me that we are now driving his parents old car because the van over heated on the way home:( When we went to bed Saturday night I just prayed that God would tell us where to look for his wallet and help us find it..then sunday rolled around..God knew I needed sunday. I got to sing on the worship team and that's when I sang oceons and right after that we sang how great is out God..and as I stood there singing I couldn't help but just feel overwhelmed with love and gratefulness for my savior.. Even when I feel He don't hear me,i know he does..i know He loves me I know HE cares..And then the pastor spoke something over me..he came right to my row,said my name and spoke "God hears you,he hears your hearts cry and he captures your tears...Keep pressing in." I sat there sobbing.What more confirmation do I need..sure ive been praying for healing for a year sure ive been praying about our finances constantly..but God...God hears it all..even though I am not seeing results right now.God hears.We got home from church and Matt found his wallet ,in the oddest place.But he said he just "felt" like he should look there. say what??!THATS GOD! Monday we found out our cars transmition is whats wrong..we were overwhelmed for about a minute..the peace of God flooded me ...and my husband spoke something so amazing as I looked at him with tears he said .."its not our car,its not our money.We do not have to worry about this."(and now im crying again..isn't that amazing?!!)and I didn't.We figured up a plan to pay off the car and on Tuesday we started talking about a way to add on to our house instead of sell it..i don't know if we will for sure do that or not,but ive noticed something since we talked about that option...I do not feel overwhelmed and then I realized..God is lifting my load.He knew the things that were making me feel even more crazy then just Haydens situation..and he lifted it.He knew he very thought of moving stressed me out..so he put that thought on hold. Wednesday I was going away and I couldn't find my phone,i was just ready to leave without it when I remembered I don't know how to get to this place and I need my phone to find out...so I walked back in my house and just said "God where is it?!" and again I felt like I should look in a pretty weird spot...there it was.And all I could say was thank you Jesus.not just for my phone..but for all He is doing!!
Isnt God good?!
Heres the topper...yesterday I was reading a book I just got and the challenge in it was to write out a list of things cause anxiety worry and fear in our lives..and I wrote out the most honest prayer ,so honest I almost felt guilty for it..but I wrote about our car and I just asked God "would you take care of this"I didn't know how that would look but that's all I asked. This morning, we got a call saying someone has donated money to help pay for our vehicle. Sometimes when God answers prayers like that I feel like I cant pick my jaw up from off the floor. So this morning i'm just dragging my jaw around:) I shouldn't be surprised.I shouldn't even be phased...but if I were God,i sure would enjoy seeing the looks on my kids faces after I did something like that:) How GREAT is our GOD!!
As for Hayden-nothing new ,the scabs still there. Some days it comes off but then it reforms a day or two later.So I find it hard to get my hopes up when its not there.We go see the doctor again middle of april.And I will keep you all posted on that.Please keep praying for her..i feel like a broken record saying that,but one of these days,these prayers will all be answered and she will be completely healthy and med-free!Be encouraged today!!
one more thing.i know this post is super long so if your still reading props to you:)I write it all out so one day I can look back on it all :) BUT-if you are going through a rough time.do yourself a favor and listen to our sermon at church this past sunday...I cant begin to tell you how it spoke to me. you can even see me singing:)heres the link:)
http://hisfcc.com/index.php?p=1_10_Sermons
Those words have hit me hard the past week. I just have to blog about the prayers God has been answering...The way He is moving so evidently in our lives! God is so good!
Last week I was having such a rough week. I had to re-fill Haydens meds..again. I cant explain to you the the dark cloud that I feel follows me into the pharmacy everytime I go.Ive gotten to know the pharmacists in there and they always ask how she's doing,what are the doctors saying by now..and its always the same thing.. oh just same old you know.And then she rings me up, Her meds aren't that exspensive and God has always provided for us in that,and for that im grateful..anyways ,last week.(me and my bunny trails) We've been talking about moving ,for a while now,but we'd really like to do that by next year..we have work to do on our house before we can sell so we are constanly trying to figure out how we can do this,when we should do that..and for me that stresses me a bit.Ok kinda allot.It looks sooo huge to me and when I think of all we have to do I feel like ill just drown. Thursday night on the way home from revival meetings at our church,our vehichle started acting weird and we could barely make it home.So Friday the mechanic took it in thinkin it was just a pipe that needed to be changed,We borrowed our brother in laws van till ours was fixed.Friday I sat down to have my devotions,a very tired,stressed me. And I started praying,crying out to God to please take some of this load off. In the middle of my prayer I just stopped and said "God do you even hear me ?!" And that was that.Saturday evening Matt was going to church and couldn't find his wallet...he searched frantically but it didn't turn up..so he went off to church hopeing I would find it while he was gone.When he got home is said I I hadn't found it so he kept looking and then informed me that we are now driving his parents old car because the van over heated on the way home:( When we went to bed Saturday night I just prayed that God would tell us where to look for his wallet and help us find it..then sunday rolled around..God knew I needed sunday. I got to sing on the worship team and that's when I sang oceons and right after that we sang how great is out God..and as I stood there singing I couldn't help but just feel overwhelmed with love and gratefulness for my savior.. Even when I feel He don't hear me,i know he does..i know He loves me I know HE cares..And then the pastor spoke something over me..he came right to my row,said my name and spoke "God hears you,he hears your hearts cry and he captures your tears...Keep pressing in." I sat there sobbing.What more confirmation do I need..sure ive been praying for healing for a year sure ive been praying about our finances constantly..but God...God hears it all..even though I am not seeing results right now.God hears.We got home from church and Matt found his wallet ,in the oddest place.But he said he just "felt" like he should look there. say what??!THATS GOD! Monday we found out our cars transmition is whats wrong..we were overwhelmed for about a minute..the peace of God flooded me ...and my husband spoke something so amazing as I looked at him with tears he said .."its not our car,its not our money.We do not have to worry about this."(and now im crying again..isn't that amazing?!!)and I didn't.We figured up a plan to pay off the car and on Tuesday we started talking about a way to add on to our house instead of sell it..i don't know if we will for sure do that or not,but ive noticed something since we talked about that option...I do not feel overwhelmed and then I realized..God is lifting my load.He knew the things that were making me feel even more crazy then just Haydens situation..and he lifted it.He knew he very thought of moving stressed me out..so he put that thought on hold. Wednesday I was going away and I couldn't find my phone,i was just ready to leave without it when I remembered I don't know how to get to this place and I need my phone to find out...so I walked back in my house and just said "God where is it?!" and again I felt like I should look in a pretty weird spot...there it was.And all I could say was thank you Jesus.not just for my phone..but for all He is doing!!
Isnt God good?!
Heres the topper...yesterday I was reading a book I just got and the challenge in it was to write out a list of things cause anxiety worry and fear in our lives..and I wrote out the most honest prayer ,so honest I almost felt guilty for it..but I wrote about our car and I just asked God "would you take care of this"I didn't know how that would look but that's all I asked. This morning, we got a call saying someone has donated money to help pay for our vehicle. Sometimes when God answers prayers like that I feel like I cant pick my jaw up from off the floor. So this morning i'm just dragging my jaw around:) I shouldn't be surprised.I shouldn't even be phased...but if I were God,i sure would enjoy seeing the looks on my kids faces after I did something like that:) How GREAT is our GOD!!
As for Hayden-nothing new ,the scabs still there. Some days it comes off but then it reforms a day or two later.So I find it hard to get my hopes up when its not there.We go see the doctor again middle of april.And I will keep you all posted on that.Please keep praying for her..i feel like a broken record saying that,but one of these days,these prayers will all be answered and she will be completely healthy and med-free!Be encouraged today!!
one more thing.i know this post is super long so if your still reading props to you:)I write it all out so one day I can look back on it all :) BUT-if you are going through a rough time.do yourself a favor and listen to our sermon at church this past sunday...I cant begin to tell you how it spoke to me. you can even see me singing:)heres the link:)
http://hisfcc.com/index.php?p=1_10_Sermons
Thursday, March 19, 2015
Friends,laughter and health
The kids and I just got back from a week long trip to florida to visit my parents and boy did we have a blast.It was so very relaxing and full of quality time with some of my favorite peopleThe kids were beyond thrilled to see mimi and papa
.My cousin & best friend was down a week before I came and our trips overlapped by 3 days-We haven't seen each other for almost 6 months!We got to spend time together as well.You know that girl friend who just really gets you-who makes you laugh from the pit of your belly-who you can make laugh with one tiny odd little comment,who ,when you say 3 words of a sentence she knows where your going with it or how your feeling about that situation..the one who you have so many memories with that the "inside jokes" just flow when your together,that one who no matter how long it goes since you seen or talked to each other,nothings changed and you pick up right where you left off as though you never missed a beat.The one who your heart breaks when she goes through tough times and all you want to do is pick her up,take her out for the evening and just laugh together cause you know she just needs that.The one who ,you could go to a coffee shop and order her favorite drink without asking what that drink is...that one..thats my Tonya.
We spent the evening together wedneday ,taking our kids for ice cream and talking as fast and as much as we could to fill up the night and when it was over we still had so much to say...Thursday we went out with our moms ,my 2 kids and her oldest,We ate sushi,cause that's our favorite and a tradition we started a few years ago for each others birthdays,instead of gifts we treat each other to sushi.We giggled at our moms being so cool,
we laughed as we asked for the kids style chopped sticks for our kids and then some for ourselves as well,
we sent pictures to our sisters to make them jealous and show them what a great time we were having,we smiled with pure delight as we watched our kids interact with each other cause that's what we always dreamed of,them being best friends like we are.
Then we headed out and went to her moms(my aunts) house to let the kids swim in the pool.We spent the 2 hours there just laughing,laughing at our kids at our moms but mostly at ourselves:)Shes pregnant and having the baby in may so we watched her tummy in hopes that the baby would kick while the kids were watching,i made funny comments and she giggled that laugh that just egged me on to make more funny comments while our moms were taking videos and pictures of us laughing together. Mom and I took the kids home for naps and later went back over to eat supper with them.And have even more fun.It was such a good day...when tryin to tell my husband about it all I could say was just that I was just so happy but I think more then anything,being with her and our moms,and havnig the fun we had,just made me forget all the rest of the stuff that was going on around me...
After I posted my last post about what the surgeon said,i assumed his word was golden.That the scab was nothing to do with the infection. I had to call the Id doctor to ask about Haydens meds,i assumed since he said the scab was not infection that that meant Hayden could come off her meds cause the reason she was still on the meds was because of the scab.Well when I called the Id doctor she said Hayden could come off the one med but she wants her to finish out the other when I asked why she said she doesn't think she agrees with the surgeon about the scab,she thinks the scab is residual therefore she doesn't feel comfortable taking her off the meds completely.While in florida Haydens meds were just about gone so again I assumed since she said finish it out that after this bottle we'd be done.But then I realized I still have like 6 refills on the bottle..so I called in again to ask if she meant finish out the bottle I have or finish out the refills...and she said she wants her to stay on it until she see's her again in april.I keep praying that God will help me just to roll with this..to not let any of it sting.But it just does..everytime they say "a little longer" its like another kick.A few weekends ago we went to myrtle beach for the weekend with Matts ball team and I forgot Haydens meds(a first) so for 3 days she went without and she was a bear..it was as though her body was going through withdraw.I kept thinking im imagining,but after talking to a few people and them saying things like well shes on drugs what do you expect?!
In florida Hayden got sun and for some reason when ever she gets sun(since being on meds) she gets bumps all over her skin.This time it was on her face and neck.So I was researching her meds for the millionth time trying to figure out if its the meds or something else causing it..
I sit here day after day thinking "Ok God give me wisdom,help me not to worry I give this to you.."but like any thing we deal with in life it is a constant giving up..Its reminding yourself,this is not for me to carry,even though as a mom I feel like it is..
Last night we had a church and they talked about going through the fire and you know what? I got excited..cause I feel like we've been walking through a fire, and its been a year now,how much is God going to use this,us?! He has to have something big in mind.OH father bring the fire!! REFINE ME!!One thing this has taught me is I am so far from perfect,there is soo much work to be done on me. As we sang last night
"Refiners fire,my hearts one desire is to be Holy,set apart for you Lord" I couldn't say it better myself,Lord I want to be holy!
We spent tim with cousins at the beach..
hung out with mummy
and did everything mimi did
After I posted my last post about what the surgeon said,i assumed his word was golden.That the scab was nothing to do with the infection. I had to call the Id doctor to ask about Haydens meds,i assumed since he said the scab was not infection that that meant Hayden could come off her meds cause the reason she was still on the meds was because of the scab.Well when I called the Id doctor she said Hayden could come off the one med but she wants her to finish out the other when I asked why she said she doesn't think she agrees with the surgeon about the scab,she thinks the scab is residual therefore she doesn't feel comfortable taking her off the meds completely.While in florida Haydens meds were just about gone so again I assumed since she said finish it out that after this bottle we'd be done.But then I realized I still have like 6 refills on the bottle..so I called in again to ask if she meant finish out the bottle I have or finish out the refills...and she said she wants her to stay on it until she see's her again in april.I keep praying that God will help me just to roll with this..to not let any of it sting.But it just does..everytime they say "a little longer" its like another kick.A few weekends ago we went to myrtle beach for the weekend with Matts ball team and I forgot Haydens meds(a first) so for 3 days she went without and she was a bear..it was as though her body was going through withdraw.I kept thinking im imagining,but after talking to a few people and them saying things like well shes on drugs what do you expect?!
In florida Hayden got sun and for some reason when ever she gets sun(since being on meds) she gets bumps all over her skin.This time it was on her face and neck.So I was researching her meds for the millionth time trying to figure out if its the meds or something else causing it..
I sit here day after day thinking "Ok God give me wisdom,help me not to worry I give this to you.."but like any thing we deal with in life it is a constant giving up..Its reminding yourself,this is not for me to carry,even though as a mom I feel like it is..
Last night we had a church and they talked about going through the fire and you know what? I got excited..cause I feel like we've been walking through a fire, and its been a year now,how much is God going to use this,us?! He has to have something big in mind.OH father bring the fire!! REFINE ME!!One thing this has taught me is I am so far from perfect,there is soo much work to be done on me. As we sang last night
"Refiners fire,my hearts one desire is to be Holy,set apart for you Lord" I couldn't say it better myself,Lord I want to be holy!
Monday, February 23, 2015
Nuzzled in...
How do I start todays blog... one word. TRUST. There have been so many times over the past year that I felt I have had a choice..to trust God,the almighty ,omnipotent Father of mine.Or to worry,to stress ,to fear.I must admit that although my soul longed to choose the first option,more then once,my flesh has gone with the ladder. And everytime,im reminded what an awful place that is to be in.Over the past week ive had days of both,we had allot of stress ,with both Matt and I being sick middle of the week last week,we had some worry and fear as I have felt like I cant plan ahead of Tuesday(tomorrow)until I know if we will or will not be having another surgery for Hayden.But today...today I feel nothing but trust. Its so amazing to me how I feel like God works everything out exactly how it should be..how I need it to be,before I even know I need it.I was asked to sing on the worship team sunday,but once I got this cold I was like oh boy...but somehow,i was able to sing yesterday..ive said it before how healing singing is for me..and the songs we sang yesterday spoke straight to my heart.At one point while singing I felt like,it was just me and God right there,having church.Even If no one else had "church" I did...And it was amazing." God I look to you I wont be overwhelmed ..give me wisdom,you know just what to do .."It was such a time of sacrifice for me..i felt like right there I was saying "ok God,its yours.Speak to me,i trust you." beautiful.so beautiful. This morning I woke up,and spent some time reading my bible and praying and during that time the kids were having a hard time getting along. So I did something I don't do often enough,i stood up,placed my hands on each of there heads,and prayed.Knowing that they would probably run away thinking its a game,instead,Asher looked at me,stood up and nuzzled into me,Hayden followed in his footsteps and they both stood there as I prayed,nuzzled into me,and at the end both said "in Jesus name ,Amen" and off they went.God gave me a beautiful picture...He speaks over us,And longs for us to nuzzle into Him as He does.I felt so strongly God was just saying.."Today,I want you to nuzzle into me. As I speak over you" SPEAK LORD JESUS! My heart is full.My mind is clear.And my storm,is calm.
I feel so at peace about whatever happens tomorrow. Surgery or not. Surgery would suck and it would be hard,yet I feel at peace.
Im so thankful,so thankful for everyone who has been praying for us, for family and friends that have encouraged and lifted us up, and im so thankful for a God who I know I can trust and fully rely on.
I feel so at peace about whatever happens tomorrow. Surgery or not. Surgery would suck and it would be hard,yet I feel at peace.
Im so thankful,so thankful for everyone who has been praying for us, for family and friends that have encouraged and lifted us up, and im so thankful for a God who I know I can trust and fully rely on.
Monday, February 16, 2015
unexpected news again...
"Before they call I will answer; while they are still speaking I will hear." Isaiah 65:24
That verse was so true for me today...
Hayden had a appointment with infectious disease doctor.Last we saw her was right before Christmas when we were hopeing for her to go off of her meds however there was a scab on the first scar that Dr Lacroix felt a little uneasy about so she said lets keep her on meds and we'll meet again in February and hopefully take her off then.
I left this morning and decided not to get my hopes up,i didn't want to be disappointed again...but we got unexpected news again.
As soon as she saw the scab was still there she looked troubled.She said she doesn't feel any nodes but that scab makes her think theres still infection in there trying to push out.She said she doesn't want to stop her meds yet..then she sat there a bit and didn't say anything..and then got a look on her face that I recognized:(She wants us to go see the Abrams (the surgeon) again.Shes thinking he might need to go in and do another surgery,one where he can clean out any more infection that's still in there and then at the same time can perform reconstructive surgery on the scar.She set up an appointment for next Tuesday and is going to let him decide what to do from here...however,from our experience,if Dr Lacroix thinks that's what we should do,Dr Abrams usually agrees. After she told me all this she went out of the room to call Dr Abrams and set up an appointment for us,during that time I text matt and our families along with some close friends and told them what she said..for about a minute,i sat there tears welling up in my eyes and feeling so discouraged,but just like that I started feeling like "its ok,Gods got this,He knows what she needs,He knows what I need,He will give me strength,its going to be ok.dont out ahead,focuse on now." Dr Lacroix came back in with my appointment scheduled with Dr Abrams and we talked a bit more,she did say that she didn't like doing another surgery on her with her being so young,but its also been 8 months of therapy since her last surgery and it just might be what we need to do .She thinks that after another surgery we could be done..no more meds and hopefully be rid of this awful disease. After hearing that I thought,you know what,i hate thinking about the stress of another surgery,another hospital visit and putting her through all that again,but if it meant for it to be done and over with,i think id be ok with that..its time for healing..its time to move on from this.
I have felt so lifted today..a few times tears have came thinking about putting her through another surgery,but it seems as though God continues to "refuel" me all day.As though satan keeps throwing things at me but right before he does God comes in ,refuels me,and then I stand strong. My amazing friend text me right as I got into my car to leave today before she knew anything about the visit we had just had and she sent me the devotions she had read that morning..about God knowing me..knowing what I need before I need it.."our Heavenly father knows exactly what we will face today and next week.He is eager for us to experience Him as he provides for us..Maybe I needed today,maybe I needed to be reminded of the strength he places in me in the exact moment I need it .When I think before something even happens "how in the world would I handle that?How would I cope"..you just don't know..you don't know until your there,in the room hearing something unexpected and Gods grace pours in.Not that it don't hurt,not that you don't have your moments of panick...but God...hears each prayer,reaches down ,and comforts.Right.When.You.Need.It. "He is ready to show His strength through our weakness.Our Heavenly Father knows whats best for us and He is prepared to provide every need,if we will but ask"(phil.4:13)
We are trusting God in this...if this third surgery is what Hayden needs..we will accept it and praise Him still...If God says "enough"..we will be grateful. Pray with us for discernment for Dr Abrams when he sees her next week.And also that this next week would be peaceful for Matt and I...I don't like waiting, but I refuse to be weighed down by this.
That verse was so true for me today...
Hayden had a appointment with infectious disease doctor.Last we saw her was right before Christmas when we were hopeing for her to go off of her meds however there was a scab on the first scar that Dr Lacroix felt a little uneasy about so she said lets keep her on meds and we'll meet again in February and hopefully take her off then.
I left this morning and decided not to get my hopes up,i didn't want to be disappointed again...but we got unexpected news again.
As soon as she saw the scab was still there she looked troubled.She said she doesn't feel any nodes but that scab makes her think theres still infection in there trying to push out.She said she doesn't want to stop her meds yet..then she sat there a bit and didn't say anything..and then got a look on her face that I recognized:(She wants us to go see the Abrams (the surgeon) again.Shes thinking he might need to go in and do another surgery,one where he can clean out any more infection that's still in there and then at the same time can perform reconstructive surgery on the scar.She set up an appointment for next Tuesday and is going to let him decide what to do from here...however,from our experience,if Dr Lacroix thinks that's what we should do,Dr Abrams usually agrees. After she told me all this she went out of the room to call Dr Abrams and set up an appointment for us,during that time I text matt and our families along with some close friends and told them what she said..for about a minute,i sat there tears welling up in my eyes and feeling so discouraged,but just like that I started feeling like "its ok,Gods got this,He knows what she needs,He knows what I need,He will give me strength,its going to be ok.dont out ahead,focuse on now." Dr Lacroix came back in with my appointment scheduled with Dr Abrams and we talked a bit more,she did say that she didn't like doing another surgery on her with her being so young,but its also been 8 months of therapy since her last surgery and it just might be what we need to do .She thinks that after another surgery we could be done..no more meds and hopefully be rid of this awful disease. After hearing that I thought,you know what,i hate thinking about the stress of another surgery,another hospital visit and putting her through all that again,but if it meant for it to be done and over with,i think id be ok with that..its time for healing..its time to move on from this.
I have felt so lifted today..a few times tears have came thinking about putting her through another surgery,but it seems as though God continues to "refuel" me all day.As though satan keeps throwing things at me but right before he does God comes in ,refuels me,and then I stand strong. My amazing friend text me right as I got into my car to leave today before she knew anything about the visit we had just had and she sent me the devotions she had read that morning..about God knowing me..knowing what I need before I need it.."our Heavenly father knows exactly what we will face today and next week.He is eager for us to experience Him as he provides for us..Maybe I needed today,maybe I needed to be reminded of the strength he places in me in the exact moment I need it .When I think before something even happens "how in the world would I handle that?How would I cope"..you just don't know..you don't know until your there,in the room hearing something unexpected and Gods grace pours in.Not that it don't hurt,not that you don't have your moments of panick...but God...hears each prayer,reaches down ,and comforts.Right.When.You.Need.It. "He is ready to show His strength through our weakness.Our Heavenly Father knows whats best for us and He is prepared to provide every need,if we will but ask"(phil.4:13)
We are trusting God in this...if this third surgery is what Hayden needs..we will accept it and praise Him still...If God says "enough"..we will be grateful. Pray with us for discernment for Dr Abrams when he sees her next week.And also that this next week would be peaceful for Matt and I...I don't like waiting, but I refuse to be weighed down by this.
Monday, February 9, 2015
Come as you are...
Come out of sadness,From wherever you’ve been
Come broken hearted,Let rescue begin
Come find your mercy,Oh sinner come kneel
Earth has no sorrow,That heaven can’t heal
Earth has no sorrow,That heaven can’t heal
So lay down your burdens,Lay down your shame
All who are broken,Lift up your face
Oh wanderer come home,You’re not too far
So lay down your hurt,Lay down your heart
Come as you are
There’s hope for the hopeless,And all those who’ve strayed
Come sit at the table,Come taste the grace
There’s rest for the weary,Rest that endures
Earth has no sorrow,That heaven can’t cure
So lay down your burdens,Lay down your shame
All who are broken,Lift up your face
Oh wanderer come home,You’re not too far
So lay down your hurt,Lay down your heart
Come as you are Come as you are
Fall in his arms,Come as you are
There’s joy for the morning
Oh sinner be still,Earth has no sorrow That heaven can’t heal
Earth has no sorrow,That heaven can’t heal
I have loved this song for a couple weeks now.. every time it comes on the radio it touches something deep within me and every time I hear it I feel like Jesus puts his hand under my chin and lifts my face to look into His.. Isn't it funny how a song can do that to you.
Today the words meant something new to me..."Come out of sadness,From wherever you’ve been,Come broken hearted,Let rescue begin,Come find your mercy,Oh sinner come kneel...All who are broken, lift up your face...Lay down your heart, come as you are.
Coming as I am isn't always easy for me...I may be somewhat of an over thinker at times.. and lately over thinking has been a downfall..."our journey" seems so long. And the longer it goes the more my over-thinking self thinks "you need to just go on. Dont feel sorry for yourself. They're sick of hearing about your troubles.." My over-thinking self is also going to re-read this post and think, I probably shouldn't have wrote that, that sounds bad. But i'm going to write it.. it's healing for me. It really does something for me to express my feelings in this way...
Hayden is doing well.She's still on her medication..I really don't know when she will go off of it.She has an appointment with her ID doctor the 16th of February and im hopeing and praying that we can take her off of it after that appointment.Im also hopeging and praying that God heals my heart..my big momma heart that feels like it took a beating last year...I have such a soft spot in my heart for my little Hayden..shes so tough, but she didn't really have a choice in that,she had to be strong and brave.Still does.Being a mom is so hard..but I think the hardest part of it is the things we feel for our kids..when I see the look of hurt on my sons face,or when I see the disappointment in my daughters eyes when I tell her I cant play something with her right now...but this far,nothing has hurt worse then her in that hospital bed.I was strong for her,i smiled at her when she woke up in the mornings,and I hugged her so tightly before I sent her to the O.R. I tried all I could to have fun with her while she was hooked up to moniters.To make it look like its not so bad.And when she smiled, with her face all wrapped up in that bandage I thought"oh my word,look at her.That tough little cookie.Shes ganna be fine" ...when I feel those things for my kids,i know you feel them for yours as well...I grip my heart and say "my momma heart"
The past week has been really rough...Wednesday I had to go get my one(I only have on thank the Lord)wisdom tooth pulled..I really wanted to put it off but after having about 3 days of awful pain I decided I don't want to go through that again.Wednesday my sister in law had my kids all day and Matt took off work to stay home with me after the surgery.I slept all day,and around five Matt went and got the kids and brought home supper from wendys:)Thursday I was still on oxycodone which makes me crazy and so tired.I was getting dizzy when id stand up so again ,sis in law to the rescue, Val came and spent the morning at my house taking care of the kids and cleaning up while I layed there dozing in and out.Thursday evening I stopped the oxy but still had/have to take 800 milligram ib profen and ammoxicillen to fight infection .Friday evening Asher threw up and was crying from a stomach ache.I sent Matt out with Hayden and tried to dis-infect the house and snuggled my buddy while he layed around all evening.He threw up again before he went to bed but woke up Saturday feeling fine.I was so worried about Hayden getting it,so we tried to keep her and him from getting to close but saturday was so beautiful so we spent most of the day outside.Saturday night throughout the night I was having really bad stomach pains,which I thought were cramps(which would make sence if you know what I mean) but thought it was weird I was getting cramps since im still on ibuprofen. Sunday morning I woke up and tried to go to make the kids some chocolate milk and I could hardly walk,i stopped in the hallway and yelled for Matt,i spent the rest of the day laying in bed.Id go out to the recliner for a bit but just couldn't get in a position that didn't hurt,so id go back to bed and just lay there.My tooth was also hurting yesterday morning which was also weird to me since im 4 days out from surgery.So i took a hydrocodone,but that didn't help the "cramps" at all.By last evening i was so discouraged..What is going on??!Why are all these things happening to us just back to back to back...i love that i can say "last year" when im referring to Haydens surgerys or Matts surgery,but this weekend all that felt like last week and then boom...were hit with all this mess.I know satan wants me to feel this way and that alone makes me angry at myself for feeling this.I read on a friends blog whose son is fighting cancer "i feel like were not being carried like we once were" i could relate to that,but it also made me fall on my knees right there and cry out to God on their behalf,cause the battle they're fighting is so much worse then ours.It also made me think..satan comes to kill, steal and destroy and boy do i feel the effort hes putting into that. But we need to stand together, fight for one another.And sometimes ,for me,taking the focus off myself and praying for others who are going through the fire, helps me more then praying for myself.
I guess i write all this to say..Will you pray for us? Im ready for this attack to be over.This year long attack,that seems to never end.My husband handles all this better then i do..He goes on..just rolls with it.But im tired.I feel like God has given me strength right when i think i have none left and im so grateful for that.For a savior that i know has a "momma heart" just like mine and is feeling what im going through.He gives me grace,but there are days i forget to ask for help.
Im feeling "ok" today,the pains stab my stomach about every 15 minutes or so and even more so when i eat or drink ,ive been looking up all kinds of things...cramps,stomach ulcers,kidney stones...not sure what to chalk it up to..But we have wiffle ball tonight and that's something i look forward to every week,so ill go, and ill play as long as i don't feel as bad as i did yesterday.
Ill end this with more lyrics from another favorite and comforting song..
Come to me you tired and heavy laden, come to me with all your weariness.Here with me is where youl find your haven,and i will give you REST.
Come broken hearted,Let rescue begin
Come find your mercy,Oh sinner come kneel
Earth has no sorrow,That heaven can’t heal
Earth has no sorrow,That heaven can’t heal
So lay down your burdens,Lay down your shame
All who are broken,Lift up your face
Oh wanderer come home,You’re not too far
So lay down your hurt,Lay down your heart
Come as you are
There’s hope for the hopeless,And all those who’ve strayed
Come sit at the table,Come taste the grace
There’s rest for the weary,Rest that endures
Earth has no sorrow,That heaven can’t cure
So lay down your burdens,Lay down your shame
All who are broken,Lift up your face
Oh wanderer come home,You’re not too far
So lay down your hurt,Lay down your heart
Come as you are Come as you are
Fall in his arms,Come as you are
There’s joy for the morning
Oh sinner be still,Earth has no sorrow That heaven can’t heal
Earth has no sorrow,That heaven can’t heal
I have loved this song for a couple weeks now.. every time it comes on the radio it touches something deep within me and every time I hear it I feel like Jesus puts his hand under my chin and lifts my face to look into His.. Isn't it funny how a song can do that to you.
Today the words meant something new to me..."Come out of sadness,From wherever you’ve been,Come broken hearted,Let rescue begin,Come find your mercy,Oh sinner come kneel...All who are broken, lift up your face...Lay down your heart, come as you are.
Coming as I am isn't always easy for me...I may be somewhat of an over thinker at times.. and lately over thinking has been a downfall..."our journey" seems so long. And the longer it goes the more my over-thinking self thinks "you need to just go on. Dont feel sorry for yourself. They're sick of hearing about your troubles.." My over-thinking self is also going to re-read this post and think, I probably shouldn't have wrote that, that sounds bad. But i'm going to write it.. it's healing for me. It really does something for me to express my feelings in this way...
Hayden is doing well.She's still on her medication..I really don't know when she will go off of it.She has an appointment with her ID doctor the 16th of February and im hopeing and praying that we can take her off of it after that appointment.Im also hopeging and praying that God heals my heart..my big momma heart that feels like it took a beating last year...I have such a soft spot in my heart for my little Hayden..shes so tough, but she didn't really have a choice in that,she had to be strong and brave.Still does.Being a mom is so hard..but I think the hardest part of it is the things we feel for our kids..when I see the look of hurt on my sons face,or when I see the disappointment in my daughters eyes when I tell her I cant play something with her right now...but this far,nothing has hurt worse then her in that hospital bed.I was strong for her,i smiled at her when she woke up in the mornings,and I hugged her so tightly before I sent her to the O.R. I tried all I could to have fun with her while she was hooked up to moniters.To make it look like its not so bad.And when she smiled, with her face all wrapped up in that bandage I thought"oh my word,look at her.That tough little cookie.Shes ganna be fine" ...when I feel those things for my kids,i know you feel them for yours as well...I grip my heart and say "my momma heart"
The past week has been really rough...Wednesday I had to go get my one(I only have on thank the Lord)wisdom tooth pulled..I really wanted to put it off but after having about 3 days of awful pain I decided I don't want to go through that again.Wednesday my sister in law had my kids all day and Matt took off work to stay home with me after the surgery.I slept all day,and around five Matt went and got the kids and brought home supper from wendys:)Thursday I was still on oxycodone which makes me crazy and so tired.I was getting dizzy when id stand up so again ,sis in law to the rescue, Val came and spent the morning at my house taking care of the kids and cleaning up while I layed there dozing in and out.Thursday evening I stopped the oxy but still had/have to take 800 milligram ib profen and ammoxicillen to fight infection .Friday evening Asher threw up and was crying from a stomach ache.I sent Matt out with Hayden and tried to dis-infect the house and snuggled my buddy while he layed around all evening.He threw up again before he went to bed but woke up Saturday feeling fine.I was so worried about Hayden getting it,so we tried to keep her and him from getting to close but saturday was so beautiful so we spent most of the day outside.Saturday night throughout the night I was having really bad stomach pains,which I thought were cramps(which would make sence if you know what I mean) but thought it was weird I was getting cramps since im still on ibuprofen. Sunday morning I woke up and tried to go to make the kids some chocolate milk and I could hardly walk,i stopped in the hallway and yelled for Matt,i spent the rest of the day laying in bed.Id go out to the recliner for a bit but just couldn't get in a position that didn't hurt,so id go back to bed and just lay there.My tooth was also hurting yesterday morning which was also weird to me since im 4 days out from surgery.So i took a hydrocodone,but that didn't help the "cramps" at all.By last evening i was so discouraged..What is going on??!Why are all these things happening to us just back to back to back...i love that i can say "last year" when im referring to Haydens surgerys or Matts surgery,but this weekend all that felt like last week and then boom...were hit with all this mess.I know satan wants me to feel this way and that alone makes me angry at myself for feeling this.I read on a friends blog whose son is fighting cancer "i feel like were not being carried like we once were" i could relate to that,but it also made me fall on my knees right there and cry out to God on their behalf,cause the battle they're fighting is so much worse then ours.It also made me think..satan comes to kill, steal and destroy and boy do i feel the effort hes putting into that. But we need to stand together, fight for one another.And sometimes ,for me,taking the focus off myself and praying for others who are going through the fire, helps me more then praying for myself.
I guess i write all this to say..Will you pray for us? Im ready for this attack to be over.This year long attack,that seems to never end.My husband handles all this better then i do..He goes on..just rolls with it.But im tired.I feel like God has given me strength right when i think i have none left and im so grateful for that.For a savior that i know has a "momma heart" just like mine and is feeling what im going through.He gives me grace,but there are days i forget to ask for help.
Im feeling "ok" today,the pains stab my stomach about every 15 minutes or so and even more so when i eat or drink ,ive been looking up all kinds of things...cramps,stomach ulcers,kidney stones...not sure what to chalk it up to..But we have wiffle ball tonight and that's something i look forward to every week,so ill go, and ill play as long as i don't feel as bad as i did yesterday.
Ill end this with more lyrics from another favorite and comforting song..
Come to me you tired and heavy laden, come to me with all your weariness.Here with me is where youl find your haven,and i will give you REST.
Monday, January 12, 2015
Proclaiming in the midst of this...
Its about time for another blog:),I don't know why I don't blog more,i love to write..i love trying to type out what im feeling or thinking about..that being said..
Today im thining about...:)
I have allot on my mind today..which seems to be the case many days. sometimes I feel like my mind needs to take a break..and oh how many times ive told my husband"if you spent a day in my head.."But lets face it...any man would be exhausted being inside any womens mind for a day:)
Over the past week or so,Hayden sarted blinking her eyes really tightly and often..i didn't think much of it at first thinking shes just being silly.Yesterday we were sitting in church and she was relaxed laying against me and I noticed she was doing this..When Matt mentioned it again in a concerned way I decided I had better call the doctor the next day just to be safe.. The one medication she is on,can affect the eyes(Hayden has to see a opthamologist while on this med to make sure her eyes are ok )and the doctor has told us if we see any changes in her to let her know...
however I woke up this morning with a awful toothache.i felt it the weekend but it was dull an di figured it would go away..i know I need to get my wisdom tooth pulled ,but thought I would just wait it out..i guess not no more.
I felt a little panicky this morning..trying to figure out how we would afford me getting my wisdom teeth out after we just found out before Christmas that our health care wouldn't be covering Haydens dr visits or her meds which is of dollars we owe... but then I remembered something....
I sing on the worship team at our church every now and again..definitely a passion of mine..I love it with all my heart and I so enjoy the group I get to sing with.We got together for practice on Thursday night and the worship leader gave me the songs I would be leading on we ran through the one song and I loved singing it...the tune was so beautiful...the words were so powerful
"God I look to you,i wont be overwhelmed,give me vision,to see things like you do.God I look to you ,Your where my help comes from.Give me wisdom,You know just what to do.."
After we sang it my worship leader shared the story of Jen Johnson,the women who wrote this song and how the song came about..
She was driving in her car one morning,after a crazy morning of taking kids here and there,the stresses of work and so on...and she just started singing.."God I look to you,cause im so overwhelmed" she kept singing that when she just felt God lay on her heart.."Stop telling me how your feeling and start proclaiming!!"So she started singing " God I look to you,I WONT BE overwhelmed"
This morning,all morning I felt like I just couldn't get my ducks in a row,do I call the dentist or not,oh yes I need to call Haydens doctor,which should I call first,i don't want the appointments scheduled on the same day...and so on and so on..it don't take much for me ,especially with Haydens health,to get in a bit of a tizzy...but those words kept spewing out of my mouth.."God I look to you,i wont be overwhelmed"and let me just say,i felt the peace of God flooding my mind..And as I kept singing that song...I made the calls..
I have a dentist appointment set up for this evening ,they are going to give me an exam and maybe some xrays and some pain meds to hold me over and then go from there as far as getting the teeth out..As for Hayden,i called the doctor but had to let a message,
im assuming they will want to see her this week Just to make sure its nothing serious.
Oh Jesus,how much you have brought us through over the past year..in March it will be one year since all of this started..February a year ago I had my gullbladder surgery and a month later Hayden got sick...a whole year..thinkin back to when she got sick and we thought it was just virus..that feels like so long ago.and never did we imagine what it actually was.Im so thankful for the doctors who got to the bottom of it all,who helped her get to where she is today and who continue keeping an eye on her and will continue doing so for the next 6 months or so.Im also so thankful for the grace God gives in the midst of our storms...I already look back at Haydens first surgery and wonder how in the world did we get through that..I know I have learned so much...and im so thankful for the way God "equipts" us for when we walk through tough stuff.
I had hoped going in to this new year that this year would be free of all things health related(as far as doctors etc)..other then finishing up Haydens meds..But 12 days into the year im guessing that's not going to be the case.When Matt had his surgery it felt so heavy to me,so much,too much.But I think now,i have i a new pair of glasses on... I wont be overwhelmed.
What do you need today? Proclaim it.
Today im thining about...:)
I have allot on my mind today..which seems to be the case many days. sometimes I feel like my mind needs to take a break..and oh how many times ive told my husband"if you spent a day in my head.."But lets face it...any man would be exhausted being inside any womens mind for a day:)
Over the past week or so,Hayden sarted blinking her eyes really tightly and often..i didn't think much of it at first thinking shes just being silly.Yesterday we were sitting in church and she was relaxed laying against me and I noticed she was doing this..When Matt mentioned it again in a concerned way I decided I had better call the doctor the next day just to be safe.. The one medication she is on,can affect the eyes(Hayden has to see a opthamologist while on this med to make sure her eyes are ok )and the doctor has told us if we see any changes in her to let her know...
however I woke up this morning with a awful toothache.i felt it the weekend but it was dull an di figured it would go away..i know I need to get my wisdom tooth pulled ,but thought I would just wait it out..i guess not no more.
I felt a little panicky this morning..trying to figure out how we would afford me getting my wisdom teeth out after we just found out before Christmas that our health care wouldn't be covering Haydens dr visits or her meds which is of dollars we owe... but then I remembered something....
I sing on the worship team at our church every now and again..definitely a passion of mine..I love it with all my heart and I so enjoy the group I get to sing with.We got together for practice on Thursday night and the worship leader gave me the songs I would be leading on we ran through the one song and I loved singing it...the tune was so beautiful...the words were so powerful
"God I look to you,i wont be overwhelmed,give me vision,to see things like you do.God I look to you ,Your where my help comes from.Give me wisdom,You know just what to do.."
After we sang it my worship leader shared the story of Jen Johnson,the women who wrote this song and how the song came about..
She was driving in her car one morning,after a crazy morning of taking kids here and there,the stresses of work and so on...and she just started singing.."God I look to you,cause im so overwhelmed" she kept singing that when she just felt God lay on her heart.."Stop telling me how your feeling and start proclaiming!!"So she started singing " God I look to you,I WONT BE overwhelmed"
This morning,all morning I felt like I just couldn't get my ducks in a row,do I call the dentist or not,oh yes I need to call Haydens doctor,which should I call first,i don't want the appointments scheduled on the same day...and so on and so on..it don't take much for me ,especially with Haydens health,to get in a bit of a tizzy...but those words kept spewing out of my mouth.."God I look to you,i wont be overwhelmed"and let me just say,i felt the peace of God flooding my mind..And as I kept singing that song...I made the calls..
I have a dentist appointment set up for this evening ,they are going to give me an exam and maybe some xrays and some pain meds to hold me over and then go from there as far as getting the teeth out..As for Hayden,i called the doctor but had to let a message,
im assuming they will want to see her this week Just to make sure its nothing serious.
Oh Jesus,how much you have brought us through over the past year..in March it will be one year since all of this started..February a year ago I had my gullbladder surgery and a month later Hayden got sick...a whole year..thinkin back to when she got sick and we thought it was just virus..that feels like so long ago.and never did we imagine what it actually was.Im so thankful for the doctors who got to the bottom of it all,who helped her get to where she is today and who continue keeping an eye on her and will continue doing so for the next 6 months or so.Im also so thankful for the grace God gives in the midst of our storms...I already look back at Haydens first surgery and wonder how in the world did we get through that..I know I have learned so much...and im so thankful for the way God "equipts" us for when we walk through tough stuff.
I had hoped going in to this new year that this year would be free of all things health related(as far as doctors etc)..other then finishing up Haydens meds..But 12 days into the year im guessing that's not going to be the case.When Matt had his surgery it felt so heavy to me,so much,too much.But I think now,i have i a new pair of glasses on... I wont be overwhelmed.
What do you need today? Proclaim it.
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