Forgot our Anniversary!

I just realized that I forgot our 5 year anniversary.  Not of our marriage, but of our Mecp2 D-Day.  

It was in mid-October 5 years ago that I first heard the words Mecp2 Duplication syndrome.  Our life was changed forever.  

That was such a stressful time in our lives!  We had a darling baby boy.  We had recently celebrated his 1st birthday, although his 1 year milestones were not close to being met.  He was unable to sit up on his own or eat his own cake (he did eat some icing).  He had just undergone 2 surgeries, a number of tests (some requiring sedation) and then suffered a broken leg a few weeks later.  The shocking diagnosis (and the news that I was a carrier) came next.  It was followed by a winter full of hospital stays, deep suctioning, supplemental o2,  and surgery.    Exhausting.  Emotionally and physically!  Not just for Liam, but for all of us.  

Every year since, when the leaves fall of of the trees, I find myself remembering and reliving those hard days.  There are songs that I can't listen to without having feelings of panic and remembering all of those scary and overwhelming feelings.  Every year finds me feeling like I couldn't love Liam more than I do.  Each year though, my little Liam grows and changes and I love him even more than I did the last year. 

I think of all the plans, dreams and expectations that I had for Liam.  The day that my pregnancy test was positive I had so many exciting expectations.  The day I first felt him move in my belly I had dreams.  The day I saw his little face and called him Liam for the first time, I knew that the Lord had great things here on earth for him to do.  14 months later- in the days when I was learning what Mecp2 duplication syndrome meant -every dream, expectation and plan seemed to shatter.  Yet life went on...  Liam showed us that we could hope and dream for his future.  Our hopes and dreams would certainly look different than we had thought, but they would be beautiful still.  God has certainly shown us that he has great plans for our Liam here on earth.  More people have been touched by our sweet boy than we ever thought to dream or imagine.  

I'm absolutely thankful that 5 years later we aren't counting our lives as before  Mecp2 and after Mecp2.  I know well  from seeing what our other Mecp2 friends go through that we had better enjoy the calm while it is here because this syndrome doesn't promise a future of calm.  I'm guessing there will be lots of years in the future in which I will think all the time about our Mecp2 duplication lives.  Don't get me wrong,  this life is not simple or easy, but the things we have been faced with lately are new staff for Liam and new schools for both kiddos.  I spend far more time at the hospital working on the parent advisory committee than visiting doctors.  (We haven't been inpatient guests there in a few years!!!)   We still can never relax when Liam has any illness and it is always a far bigger deal than when the girls do, but his good health and tough immunity these past winters is a true gift!  I am so thankful that this anniversary was so unimportant to me this year that I actually forgot it. 

Praising God for a forgotten anniversary!!!! 

A Wedding

To our girls - a chance to be a flower girl , eat cake, drink Shirley Temples, dance til you are falling down, have tons of grown ups telling you how cute you are, run around with cousins and other flower girls, put flowers in your hair, get some candy, count the gifts, try to mess with all of the DJs buttons and switches until people chase you, stay up late in the dark.

To Liam - warm, humid, noisy, really noisy, confining, too many strange people, too many beloved people who aren't in the places they are usually but instead all together, noisy, really noisy, warm, crowded, too much sun outside, too dark inside, lots of people greeting him, saying how handsome, touching him, unfamiliar smells, noisy, noisy, noisy.

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We had a babysitter for the reception so we could go as a family to the ceremony and the dinner, but spare the 2 littles (and ourselves!  Who are we kidding?) the long night. These are the moments when we realize how difficult this special needs life makes it to do things as a family. Next time we won't torment the sweet boy. We will leave him with one of his wonderful caregivers. And we will miss our boy the whole time and feel sad when we take a photo all spiffed up b/c he will be missing.

And yet these are also the moments when we realize that not only has God directed our journey, but he has placed so many incredible, loving, and caring people into our lives.  He allowed me to see early on that although I stay at home to care for our kids, if I want this family to have normalcy and Liam to be happy and thrive, I need to share Liam's care with these amazing helpers.  May God continue to send us such helpers as needed and may he guard our hearts and minds that we will look at such circumstances remembering that we (and Liam) are beloved children of God and not become discouraged.

Mecp 2 Duplication - Explanation of Syndrome and Most Current Research

This link gives a fantastic and easy to understand explanation of Mecp2 Duplication syndrome and talks about the latest research on it.  It really sheds light on why we are so worried each time that Liam has a simple cold. 

http://sfari.org/news-and-opinion/news/2013/duplication-of-rett-syndrome-gene-triggers-immune-problems?utm_source=Autism+research+news+from+SFARI.org&utm_campaign=e0281b169d-SFARI_Newsletter_20130205&utm_medium=email