Friday, October 22, 2010

"D" Day

Diagnosis day...

Three years ago today the bottom fell out of my world. I was faced with my biggest fear that my little man would not just out grow the delays. That he was always going to struggle. For the first time I heard the words Fragile X. As I reflect on the feeling of that day I can replay it as if I was watching a movie...exactly what happened I can still hear the phone ring. What followed that day were some of the darkest days of my life. The fear of what the diagnosis meant was enough to make me sick. The unbelievable sadness of watching my dreams for my child slip away. The guilt because I did this. It was my gene that caused this. The selfishness that I felt knowing I may not get to celebrate things like normal parents get to. All of my questions for the future that had no answers. Will he go to kindergarten when his friends do, will he play sports, will he go to dances, will he have a girlfriend, will he graduate, will he get married, will he ever know the sheer joy of being a parent, will I ever get to be a grandparent, will he be president. My anger directed at everyone and my faith how could this happen. We waited so long and dreamed so much for this precious little boy. It all felt so cruel. Nobody could say the right things. In those few months that followed we were just surviving there was no living. What a horrible place to be. I can still remember the moment I came out of the dark...I was sitting on the floor crying as I did everyday and Hayden came to me put his hand on my cheek and smiled at me. I could see the light in his eyes and sheer love in his soul. This was my little boy that I thought at one point I might never have. There was a time when I was told I would never be a mommy. What was I doing...I sure as heck wasn't being a very good mommy that I promised him and God I would be if only given the chance. I picked myself up from the ground dusted off and looked at the son. I knew that I had it in me to be what this little angel needed me to be. I was going to prove it. To myself, to that angel boy, to the doctors that seemed to have fewer answer than I did.

Three years later....

I look at how far we have come. How far that little boy has come. How hard he works. How much I push him. I am amazed at how much he loves me. It humbles me to know that in his eyes I am his world. I look at all the joy in my life and how blessed I am. I have one of God's true miracles. I have a little boy that I kiss every morning, pick up from school every day and put to bed and pray with every night. He says he loves me. He knows I'm his mommy. I have a husband who doesn't care that I have a defective gene that might never give him another child. I have that guy who is willing to help create support groups because I said I need one. I have that guy who want to create change to make the world a better place for our little man. I have that guy who holds me when I cry and most of the time has no idea why I am crying. I have that guy who thinks I am the best mommy our little boy could ever have even though in my own mind I fall really short. I have an amazing family who looks at my little man like there is nothing wrong. I have amazing friends some of which completely get it and some that never will. What more could one woman ask for? Ok maybe a cure! I pray for that, I hope for that, I advocate for that.

Do I still have dark moments...oh yea. But they are moments now not days or months like they used to be.

To my husband who shares all of my same fears but is strong enough to put them aside and hold me. You are my home, my safe place, my best friend. I love you with everything that is inside me. To all of my friends and family who have prayed, cried, been angry and confused with me over the last three years with all my heart I love you! To my sister who has on more than one occasion bit someones head off over that last three years for saying the "wrong" things about Hayden when I was to emotional to do it. Everyone should have a sister like you! So as I wipe my eyes and make a pledge to myself and to Hayden that I will not cry again today I can tell you that our future looks bright and sunny. The journey is hard and sometime painful but I know now that it doesn't last. Grey sky's will pass and the sun will come back about 2:45 every day!

From the bottom of my soul I thank all of you for the last three years of support!


dts said...

hi, my two year old son was just diagnosed with fragile x yesterday. i live in texas too, in Austin. is it ok if we talk? this diagnosis is very new and scary for my whole family. please call me anytime at 512-203-9207 or email me at thank you.

Mary Beth said...

Tina, you are awesome. I love this honest post. It shows how far you've come and it shows others (like your first commenter) that they TOO will have this journey get easier than the first day of a diagnosis. None of us wish Fragile X on our child, but we have such an amazing Fragile X family with which we've bonded! Cool how I was your first Fragile X mom friend in Michigan and now you'll be others' first Fragile X mom friends in Texas.

fragilemom said...

Found your blog from another's webring or blog roll or whatever it's called. Then found out from first comment that you live in too (Arlington). We have 3 children with FX (6 years, 5 years, 3 years). Would love for you to visit my blog (fragilemom). I have all the memories of each of our diagnosis days as well. Makes me feel much less alone to read that other FX moms have felt the exact same things. Please visit soon.