Friday, June 7, 2013

Ripping off the band-aid

This morning I gave Hayden his last dose of arbaclofen.  I packaged it all up and set it on Mike's bag to put in the mail.  Three months worth of medication sent in Fed-ex bag.  It's done, what we had so much hope in, is done.  We could have dragged it out.  We could have prolonged it.  I thought about it.  But in the end that's just not what we do.  Mike and I have always had the philosophy of you rip the band-aid off really fast.  You make it quick so you know what you are dealing with.  I can't imagine the emotional toll it would have taken to drag it out painfully.  That way has never been our way.  However, we are seeing some regression already.   Mostly with his agitation.  He is more quickly agitate and has less patience.   He is also fixating (perseverating) on one thing and it seems harder to bring him out of it.  He has gone back to  "moaning and screeching".  I kind of forgot he used to do that.  It all came back to us really quick.  He is however sweeter than ever.  He's doing things to make us laugh more than he used to. That might have a little bit to do with the fact that is now summer vacation. He has been looking forward to being out of school for a few weeks now.  He seems really happy.   I mean really happy. 

I am concerned for what tomorrow and the next few weeks will bring.  With no medication in him will the agitation get worse?  Will we have new issues to deal with?

I think in some weird way we are lucky to be finding out what is going to happen during the summer.  We have the whole summer to figure out where we go from here.  That was one of the deciding factors in starting the titration as quickly as we did and not putting up a fight. This way I can take him to the pool every day.  I can give him the space and time he needs.  We will have time to decide if we need new medications.  We  have time to figure out what those new meds may or may not do.  We will see where the next few weeks and months go.  Again we play the waiting game. 

I am so blessed to part of such a supportive and wonderful community.  Our Fragile X family has been amazing.  How we hope, pray and dream for everyone.  Every struggle is our struggle and every triumph is our triumph.  Tears are shed for children and families I have never met.  Virtual high-fives are given to children and families I have never seen face to face.  Hugs are shared with moms I have never actually touched before.  I have been on my knee's with my hand folded in prayer for families and children I have never shaken hands with.  All of this has come back to our family.  Tears, high-fives, hugs, and prayers have been given for my family.  For the Makris family (San Antonio, TX)  that some have never met, seen, touched or even shaken hands with.   Yet so many hope and dream with us.  This is the Fragile X community I belong to.  This the community I am so grateful we are a part of.  This is the community that will over come this set back and we will all come out stronger and better than before.  Because that's who we are.  God gave us this life and connected us in way.  He will pull us out, It may not be tomorrow, It may not be next week, or next month or even next year.  Clarity, peace and contentment will come again.  Until then I will continue to pray, cry, high-five and share hugs with you all.

"I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11




Rachelle said...

You are strong and it makes me stronger. I love you and pray for and with you!

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