I asked Dr. Driscol straight up what his thoughts were as to why Ayden Jane seems more mildly affected by PWS than others that I know. On one hand I feel like I shouldn't dwell on that and I should just be thankful. On the other, my heart wants the same for the other little ones I have met. I don't want that to sound like I think the others are less in any way. They all have an incredible spirit that I wish was evident in a lot of 'typical' kids I know. They are endearing little ones that I could just scoop up and squeeze! I love reading about the accomplishments and it is like living that amazing feeling of triumph we had each time AJ conquered a new skill.
His answer? Well, I will skip the genetics lesson to keep you from falling asleep at the computer. (Of course, I find I am a bit of a junkie for this stuff and could have continued my lesson indefinitely) He feels that most likely AJ's good fortune lies in the rest of her genetics. (barring some unexpected result in the micro array) She just has the luck of the draw for great genes to overcome the missing genetic material. That's the positive way to look at it. There is a hard part I try not to think about. Likely the fact that she is average IQ means that she would have likely been gifted. The fact that she is doing so well with motor skills means she likely would have been a gifted athlete. It brings fresh the feelings of loss. Loss of the child that AJ could have been but I will never meet. It truly feels like a piece or our family is missing somehow. I have not experienced a miscarriage, but in my mind it would be a similar feeling, losing someone you never had the opportunity to meet. I can honestly say though, that I am now to the point that as much as my heart aches from the loss, I would not trade our Ayden Jane for a less PWS model. Her struggles have made her who she is and have made our family, a family of better people.
Got a little teary-eyed reading this. I think regardless of the degree of challenges, there still is some loss. I would imagine that if my child were more mildly affected, I would feel the same way and maybe even be more annoyed at the things that hold him back because he would SO close. But I'm not going to tell you how you feel. :) Hugs.
ReplyDeleteI have experienced infertility, miscarriage, foster care, and multiple diagnosis. Obviously my son with pws is not mildly affected. Well he is very verbally "intelligent" yet behaviorally on the extreme. Most likely he did not have the best "genes" from his bio parents. His bio parents had lots of issues themselves. I think about it though and he would not be the boy that I love without HIS challenges. Sure I hope he outgrows a few of the behavioral ones but I love him so much just the way he is. I would not be who I am without what I have experienced being his mother.
ReplyDeleteI remember reading early on some other mom's say that they loved their pws child 'just the way they are'. I feared I would never get there. Okay, I feared... everything PWS. I think now, at 3 1/2 I get it. No words to describe it, just an unconditional love for the person inside the PWS body. I would be thankful for anything to improve the physical challenges, but I want that amazing little person inside to stay just the same.
ReplyDeleteHi Janet,
ReplyDeleteGreat post. Sophie is seven now and, as with your AJ, I'm kind of feeling like in some ways Sophie is not as severely affected. She definitely does have various levels of all the PWS "stuff" - but I guess it's just not as traumatic as I thought all this was going to be. That's not to say things couldn't look very different in six months; I know of too many families where things changed as the child got older. But for now, I am thankful for the relatively stable phase we are in. And, like all of you, Sophie is just...magical, somehow. I just keep thinking of those days in the NICU, and then I see her now...it's just incredible. All our kids are just incredible.
Hugs,
J.