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.

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"

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

to this(taken today)

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!