This week's thoughts

I lay Carsen down to sleep tonight, and he just isn't himself.  Another molar.  God help me!  Each tooth that pops through usually gives him a whole month straight of crying.  It sounds strange, and it is unfortunate when it happens because it puts him even further behind.   I have accepted in my heart that we will never catch up to what he is "supposed" to be.  When will I feel like we are making progress?  Will we ever catch a break?   One teeny tiny break?  In the past few days I have noticed that I am having a harder time carrying him for long periods.  All I want to do is kiss and hold him as close to me as possible, but I get fatigued.  These "tough" phases are rough.  They don't come very often but when they do, I just wish things would go smoother.  Matt comes to my rescue and cuddles with Carsen in bed.  I take my break and return to the most beautiful sight.  A sight that I have a hard time writing.  It was so beautiful I had large tears streaming down my cheeks and a warm smile on my sun burned face.  Matt was calming Carsen by playing with his curly hair.  Carsen would shut his heavy eyes, suck his middle fingers, then open them again just to make sure daddy was still there. 

Their bond was so precious and loving.  I found myself snuggling in next to them.  The three of us cuddle as a family in a twin boat bed.  Our stuggles have not pushed us away from eachother, they have brought us closer.  The three of us are so close to eachother.  We are so in love.  Carsen has his mommy and daddy snuggled on each side of him as he drifts to sleep.  I listen to his breathing and I know he is dreaming.  I wonder what he dreams about?  Tears fill my eyes as I write this.  I would just for 2 minutes love to hear him talk to me and tell me what he thinks, what he wants, what he needs.  What would he say to me?

When I struggle, I try hard to find the good in the situation.  It makes me think of one of my favorite verses.

Faith is being sure of what you hope for and

certain of what you do not see.  Hebrews 11:1

I know I am sure of what I hope for.   In Carsen's everyday life, I hope for a million things.  Its the "what you do not see" part that hits my gut.  Do I completely understand what God's plan is for Carsen even though I can't see it?  Am I certain that I am faithful to God's plan?  I doubt myself sometimes.   How can I feel full of faith if I know what I hope for but am not certain I trust the things that are for us to see in the future?  Confusing you yet? 

I opened my journal from last Summer.  I needed to read the progress we have made.  Deep down, I know we have made progress and I needed that assurance.  I wrote:

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May 6, 2010

How do I know we are making the right choices?  God please help us I prayed!  We will know in 6 weeks what some more genetic tests show.  Carsen was eating supper tonight and puckering up his lips to his nose like I do.  He was imitating me!  We would smile back and forth at eachother.  It was so sweet and such a bonding experience between us.  Even if I am unable to have my own children, I feel so blessed to know Carsen is so much like Matt and I.  He has our looks, our traits, he knows our jokes and silly games.  All I want for him is the best, and that means having siblings that love and care for him almost as much as we do.  We are looking into a gait trainer this week in Alex.  I pray that God leads us into a direction that he has planned for us.  We don't want to mess with any plans when dealing with genetics.  So confusing.  Carsen is so cute :)

June 9, 1010

What a week! Carsen has learned to walk with his gait trainer.  It has taken a good week to get him positioned right.  What an amazing feeling to see him walk, run into walls and make a mess with toys.  I have waited for this forever!  What a miracle, I feel so blessed!

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It has been fun to read back through my journal.  To see ways he has changed.  Who knows that he will be doing a year from now.  His progress continues to be very slow but steady.  He does not fall further behind.  His physical abilities remain about the same and he prefers to walk without his gait trainer.  I was hoping he would be doing better by this time a year ago but that goes with the territory, I guess.  Cognitively I feel like he is much more social.  We are starting to think about preschool for him so I know a lot of my stresses are coming from that. It will be such a change to allow someone else to teach him.

As I continue to read my journal, I see Carsen is scooting and moving independetly without someone doing the work for him.  Sure glad I have documented some of the hardest times of my life.  For all my blog readers, please know I am very happy with my life.  We just have a few struggles that I feel are worth sharing.  I have a few families who read my blog that have a child with special needs.  I hope someday that our struggles will help someone else know that they are not alone.  That this is what part of raising a child with special needs entails.  I am a mother who is willing to share our story so that others can understand our deepest struggles and our happy days!

I realize I need this blog to look back on someday and say, " We have come so far since then!"

I hug him every chance I get.   Our first time in the Kayak together!