Wednesday, May 13, 2015

PWS month - Siblings

No doubt being a sibling to a medically complicated/special needs (PWS or otherwise) child is challenging. It's not something the sibling asked for any more than the kiddo with PWS. I struggle with the ways that Ayden Jane has taken away from her siblings.

Time. Especially for the first several years the world really had to revolve in large part around Ayden Jane. There was much to learn about food, supplements, therapy, doctors... the list was long. It was like relearning to be a parent but in a super crash course. It took my time and attention for hours each night as I used the internet to read and read and read...  I did not have a good medical team until Ayden Jane was 2 so even when I was not actively reading I was always thinking and distracted with how to best help her. Then there were therapy hours logged and therapy homework and doctors appointments. This was time I was not available for the other 3 kids. Sometimes it hurts my heart that I missed so much time with them.

Financially. We were blessed that we were able to make the choice for me to stay home and pour into Ayden Jane those early intervention years. Gary worked so hard to keep an income coming in and family encouraged us and supported us when those ends just would not meet no matter what we did. Our other 3 heard 'no' to purchases and vacations and learned to make due with things like old shoes for longer than I would have liked at times. Shoe string finances are stressful and we tried not to allow the stress to pour through to the kids but I know it did at times.

Scary. Watching a sibling struggle so much is just plain scary. Not scary constantly, but there are times when the reality that life is not always a bed of roses hits hard. The times when Ayden Jane would get into something on their watch... they just knew the stakes were so much higher. Times when her ninja powers would come out and she would wander off in a moments notice and we couldn't find her. Times when Ayden Jane would get sick and it would wreak havoc on her body and behavior. Times when they would worry what her life would be like in the future.

The amazing thing is that despite all of that, Kayla, Noah and Mckenna love Ayden Jane to pieces. They are her greatest assets and biggest cheerleaders. With no complaints (okay with rare complaints) they fill in the gaps by taking care of each other. They know that financial needs will be covered as best as we possibly can and will wait patiently. They see how hard Ayden Jane has worked and couldn't be more proud of her. They have a deep, heart-felt understanding that kids with differences are kids first. The differences part is no big deal.

Kayla, Noah and Mckenna are Ayden Jane's heroes and blessings and I couldn't be more proud of them.

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