I typically use our blog (http://Thankful4Tanner.blogspot.com) for medical updates and Tanner’s new accomplishments. Occasionally I will write something that I find myself reading over and over again…….usually shedding some tears. This is one of those posts so I thought I would share.
Tanner was born on February 25th of 2009. He was diagnosed when he was six days old. I often say that the day Tanner was diagnosed with Wolf-Hirschhorn Syndrome was the worst day of my life. I stand by that but for different reasons today than when the words first rolled off my tongue.
When we received his diagnosis my world was shattered that our baby boy was not “perfect”. For months I cried and cried about what may lie ahead in our future. I analyzed every word that had come out of the geneticists mouth. I took it to heart and assumed everything she said was true. I didn’t think Tanner would ever walk or talk. I stalked Tanner’s every movement waiting for that first seizure that I knew would come someday. I figured I would have to do everything for him for the rest of his life and although I tried to forget it……the 34% death rate before the age of two haunted me everyday.
Yes, the day Tanner was diagnosed with Wolf-Hirschhorn Syndrome was the WORST day of my life. I think it always will be for this reason: every single day since then has been better. Some days I forget Tanner has Wolf-Hirschhorn Syndrome. He’s always smiling at me and engaging me with those “wide set, bulging eyes” that are so darn beautiful. His “little to no personality” is quite entertaining as well. His “small stature” has allowed me to cuddle, hold and nurture him far longer than most mothers are able to without the typical two year old squirming out of your arms to explore. Every milestone is celebrated like the fourth of July because his “developmental delays” by definition said he may NEVER accomplish these things.
“Perfect”……my son, Tanner, is perfect. Maybe not in the genetics teams eyes and all of their books……but to me, our family and the people that love Tanner he is very much perfect.
So, judge me if you will for saying that March 3, 2009 was the worst day of my life. I personally am thankful that EVERY DAY HAS BEEN BETTER:)
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It is funny that many things others write on here are the same things that I or we all feel. I to felt and feel like the day McKenzie was diagonised was the worst day of my life. But like you said only because everyday after has been better. Everyday I look into those baby blue eyes I am thankful she is who she is a beautiful little girl that puts a smile on my face everyday!! Thank you for sharing
I am glad that everyday has been better! All of my friends always ask how I am doing or holding up. Like you, my usual response is after his diagnosis, it can’t get much worse and it is uphill from there..
This was so good to read. I also was devastated by my son’s diagnosis. But I was just telling someone recently that there are whole days that go by now that I don’t even think about Wolf-Hirschhorn Syndrome. It will always be there of course, and I’ll keep reading about it and stay informed, but it’s no longer what I think of when I look at him. He’s just my beautiful son Frankie.
Beautiful! Absolutely Beautiful!
I have tears in my eyes after reading this because March 3, 2009 was the same day that Dylan was diagnosed. Too bad we were all the way across the country from one another. I have never felt so scared and alone in my life. I want to say that that was also the worst day of my life. Thank you for sharing this and know that I was right there with you. I love the picture of Tanner. We both have beautiful and perfect baby boys! xoxo
Jessica- I’m glad you are open about your feelings. I know that you speak for a lot of us as we didn’t plan on being in the situation that we are in. There is no question that we’ve been given the bigggest challenge of our life regardless of whether we chose this or not. We can honestly say that Kendall has brought happiness to our lives that we didn’t expect or could have gotten otherwise. Yes, I agree that every day has been better since the diagnosis… Thanks for sharing.
I agree with you 100%! I got the diagnosis for Nathaniel a few days prior to Easter weekend OVER THE PHONE and didn’t realize what it was until after I hung up with geneticist. I spent the whole “vacation” worried about the prognosis of my baby. Would he ever be able to walk, talk, or be able to function without me at our humungous family affair or at all? And , if I were to go before him, who would care for him like I can? With each accomplishment and milestone that he surpasses, the smile on my just gets bigger and bigger! He can and will do things on his own…at his own pace of course 🙂 I love my baby boy and don’t know what I would EVER do without him.