I want to thank you for your “synopsis of our prognosis.” I appreciate your honesty in telling us how horrible our lives were going to be living with this monster of a child we created. . . this genetic “mistake” that would alter our lives. . . mostly for the worse.
You had a lot of power as you held your imaginary crystal ball. But today I write on behalf of someone with more power than you. . . a Master Geneticist who makes no mistakes in the science of His creation. You see – – – you failed to mention a few things to us in your comprehensive description of our future.
I wish you had told me that this floppy baby was gonna run/walk a one mile color run at age 5. . . that he would jump on a trampoline and climb a tractor . . . or walk around Worlds of Fun for a whole day or pass Level 1 swimming lessons. . .
You told us about the horrible fits and tantrums. Yes, we have seen more than a few of those. But I’m proud to say they have happened while learning to play soccer with his genetically typical peers or because he is told “No” to something that any child would find disappointing.
How I wish you had mentioned that his flare for drama and storytelling would delight us for hours. This falls right in line with the rest of his “genetics” by the way. Yes, there is a tiny part of a chromosome missing but the other forty-five are perfect. They stamp him with a natural kindness and interest in caring for others. . . with intelligence ( I know you said he wouldn’t be smart, but he is). . . with humor and gifts like acting and a love for literature and visual arts. . .
You told me he wouldn’t do well in school but you didn’t tell me he would LOVE school. . . or that his teachers would LOVE him. You told me that our food would be severely restricted, but not how healthy and strong we would feel as we navigate that road. You told me that he would be severely delayed with developmental milestones, but not about the exhilarating joy we would feel when he reached them.
I felt powerless and hopeless and weak. I didn’t know the diagnosis you delivered would bring me my greatest strengths as well. I didn’t feel qualified to be the mother of a special needs child. But I didn’t know that was Step 1 of God turning me into a warrior.
So the next time you deliver a devastating speech to a heartbroken family and paint their future using only black paint – – – Call me and I will bring a few more colors. . . and a video. . . . .
of my son. . . reading a pre-K reader. . . .before he goes to T-ball practice.
You go Girl! PWS isn’t the end of the world Just a vastly different world than what you planed.
Says the proud grandma of 3 PWS miracles! Thank you!
oh carrie.. tears in my eyes, he is all THAT and more..i am going to share this with my son who is facing the geneticists now.. and told prognosis that breaks my heart into slivers of sorrow…. thank you for the hope.. my favorite messenger……..my only regret is that you were not there when Matthew was born to hand that precious baby to him and give him the hope of possibilties that only God can give…..
This part of the road is very dark it is ok to be sad and scared but yes! Hope is vital! God has great plans with wonderful possibilities !
Amazing testimony! My favorite picture! J’s teacher for 3 years! Blessed to be called that!
Oh Kay smith we are so blessed by you!