Our journey/feelings into words

     Over the past few years, this family has faced an incredible amount of adversity; from the very beginning we had medical problems ranging from *Twin-Twin Transfusion Syndrome that required Melissa to have two **surgeries just to try to save the boys lives, to bed rest and prematurity resulting in our family spending 90 consecutive days at Memorial Hospital where we celebrated Thanksgiving, Christmas, New Years, our anniversary, Valentine’s Day and St Patrick’s Day. In that time frame we rode a roller coaster of emotions fueled by terms we didn’t understand like: “laser ablation” and “CPAP” to terms we never wanted to hear like: “intubation”, “chest tube”, “chronic lung disease”, “blood transfusion”… the list goes on and on. We were even told Peyton had “coded” the night he was born!

     And now, in the recent years we have had to try to cope with the fact that our son is handicap. Even as I write this I felt myself have to pause before I typed “handicap”, not because I’m ashamed or embarrassed to admit it…I paused, because it hurts. It hurts his mother and I so much to know that he has been forced to struggle through meaningless tasks that we all take for granted. Imagine if you couldn’t get out of bed, sit in a chair without some sort of support that holds you in so you don’t fall out. Let alone trying to stand up out of that damn chair on your own. Standing, walking, running, dancing, sleeping…relaxing… all virtually impossible.

     Through all this adversity, Melissa and I have heard the same comment over, and over, and over again… “I don’t know how you do it!” We hear comments like, “you’re so strong”, “you’re so dedicated”, or “you’re amazing parents”… Thank you all so much for seeing that, and telling us that, your words are motivating and consoling, but there are things you don’t see… We are tired, jealous, alone, scared… I’m sure everyone try's to understand how we might feel, but unless you have ever been the parent of a child with special needs, no offense, you will never understand. But we truly thank you for trying, and want you to have an idea of what we feel.

     We would like to thank a woman who knows exactly how we feel, Cerianne, the mother of Hari, a little boy who suffers from the same disorder that Peyton does, for she originally posting this article. Fortunately for Hari, he just recently had his SDR in St Louis and will still be there when we get there. But we would also like to thank Maria Lin of the Huffington Post for writing the article “7 Things You Don’t Know About A Special Needs Parent”, she was able to put into words all of the feelings and emotions racing through the hearts and minds of special needs parents.

Below is the link to the article, I ask you to please take a minute and read what she has written. We aren’t asking for special favors or for excuses to be grumpy or on edge all the time, we just want all of you to have the Understanding.

http://www.huffingtonpost.com/mobileweb/maria-lin/special-needs-parenting_b_1314348.html

*For more information on Twin to Twin transfusion please check out: http://www.tttsfoundation.org/

**My surgery was performed by amazing doctors at Cincinnati OH Children's hospital: https://go.cincinnatichildrens.org/fetal/ttts/index.php?gclid=CLSyyoSG7K4CFSMHRQodWhY4Iw 

Thank you all!