A blog was posted a few days ago that broke my heart in two. It was written by the mom of a child very much like Shelby. She has a severe seizure disorder and has failed every anticonvulsant she has ever tried. She has lots of other related medical and developmental issues as well. I have so much respect for this mom who is traveling a difficult road and writing about it so honestly and eloquently. This week's post was not about her special needs daughter, but about her "typical" daughter. She referred to siblings of "special" kids as "invisible" and "the unseen". The plea in her words was for her daughter to know that momma sees her. That she is noticed and appreciated for all that she is. I understand this fear. Almost 2 years ago, we sent our typical daughter to a counselor. She wasn't exhibiting any behaviors that we were concerned about, but I wanted to make sure that we weren't missing anything. We wanted assurance that she wasn't being burdened beyond what she could bear. We hoped that she didn't feel resentful towards her sister, but that if she did - we could have the help of a professional to deal with those feelings. At the time, the counselor felt like Allie was handling everything well and there was nothing we needed to worry about. But not long ago, Allie went through a stage of repeated and exaggerated illnesses and injuries. We finally got her to admit that she was seeking some of the attention Shelby gets for being "sick". And thankfully, this phase was short-lived.
While I believe it is important to keep one eye peeled on typical siblings for signs of distress, I have found it even more significant to focus on the things Allie has GAINED as a result of having Shelby in her life. And lest you think this is just an excuse to brag about my child, it is. But I also have some observations about siblings of special needs kids that are relatively universal. When you grow up with a medically fragile family member, you have patience forced upon you. You become strong, mature, resilient, and tolerant. And one of the best qualities I've seen? Compassion. As they learn to help care for their siblings, they learn to care for others. The first week that Allie was in kindergarten, a sweet boy named William with Angelman's syndrome came into her class. One of the other students asked their teacher what was wrong with William. Allie - not even knowing what William's condition was - raised her hand and educated the whole class. She proclaimed that there was NOTHING WRONG with William. He had special needs, just like her sister. And that just meant he was a little different. After that she was often buddied with William on the playground and has continued to volunteer to partner with him throughout their elementary school education.
Most recently, my 10 year old Allie went with us to the state capital to lobby for the right to treat Shelby with medical cannabis. We talked to Representatives, Senators and staff members. Allie would jump right in to every discussion, and before the day was over, she wanted to be allowed to give our entire spiel. Senator Pat Fallon asked her if she was 15 years old, and Representative Susan King asked her if she was a professional lobbyist being paid for this gig! Everyone remarked on how well spoken she was and what a good sister as well. I was sooooo proud of her.
So though I understand the fears that our typical kids will feel left out or slighted in some way, I want to commend all the mommas who are juggling special needs and typical kiddos. Some days it feels like the hardest job in the world. But some days I wonder why I got to be the lucky one who gets to parent Shelby and Allie - two of the most amazing kids I know.