Today, I had to go shopping for necessities, so I bundled up Luke since I'm his only food source, and my mom for an extra set of hands, and Noah and daddy stayed home to cuddle and take a nap together. We bumped into an old friend that we hadn't seen in years, she didn't know much about Noah other than I had an older child. Probably through the grapevine as people talk. I'm sure I'm quite the topic... the girl up the street that went to school with so and so that had a "damaged child"... did you hear? We explained Noah and having quadriplegia cerebral palsy. She was completely un-interested, in Noah. She went on and on about her "normal developing" grandchildren how they run and run and she can't stop them, how they tug at her hair and are busy and into everything that are Noah's age. As my mom quietly says, Noah may never walk. Yet she kept going and going, and said it was great Luke was fine. Some people talk around it. I tried to read in her eyes was it because the topic made her uncomfortable? No. Was it because she didn't know what to say to me? No. It was because her perfect life trumped my non-perfect life. After all how does one go about bragging about a child that cannot sit, crawl, talk, walk or even self-feed? Saying my child is able to roll about on the floor doesn't entitle me to boasting rights like other parents. I used to think I represented a parent's' worst fear, that I'm a prime example of what could happen. So they could not go there in their minds to discuss it let alone comprehend what life for me must be like. But the more time goes on, I just think some people are plain flat out ignorant and insensitive. There are no good excuses for some.
The question everyone seems to be asking: of course Luke is fine. What happened to Noah is not my fault. It is not Chris' fault. It is automatically assumed that just because Noah has cerebral palsy that Luke does too. Cerebral Palsy is not genetic. And it hurts to hear people say well at least you have Luke. No, at least I have both of my children. Both boys. Just because you have a typical normal developing child it does not erase or ease the pains of a having a special needs child. Suddenly you have a normal child and no one wants to acknowledge Noah's existence they only want to ask how the one that doesn't have problems is. It doesn't just make everything all better. I will still grieve the loss of my first born's motor skills, I still will ache for him and all he should be able to do until the very day I take my last breath. Watching Luke do things Noah should be doing is difficult. I want those same things for Noah, how can I not? Luke will grow up attending therapies, and watching his parents work with their older brother, it will never be like most households.
I've continued to struggle to find a way to pay for upcoming hippo therapy for Noah. It's frustrating when I hear other special needs parents spending hundreds to have their nails and hair done, off to the spa, off to the Caribbean for a vacation while respite care tends to their child, still while receiving fundraising funds... all these wasted thousands of dollars that I only wish I had for therapy purposes. I've never had a massage, can't have my nails or hair done, there is no pampering, no vacations in our future. But that is okay. It doesn't bother me, I am not jealous. I don't want those things. But what I do want is the opportunity to help my Noah. And I can't. I would love to be like the rest and have all this extra money floating around plus whatever else fundraising provided. It feels like some of these families are double dipping. If you have the money to go on a Caribbean Cruise then why are you fundraising? Cancel your fancy vacation and use it to help your child. I can't think of the last time I bought a pair of shoes, or make-up, or anything for myself. And I hear the excuses "you need to take time for yourself." What time? There is no time for me. There never will be. My days are consumed with therapies, and tending to a child that is in no way self-sufficient. I don't have the luxury of trying to potty train my two year old, or reason with him over why he can't have a toy, or communicate with him about being sick. I don't have anything that resembles a normal life. Just because a new baby came along doesn't mean life got all lolly... it is still the same hardships it was before, the only difference is there is another beautiful soul to love and a sweet little brother for Noah, a built in friend who won't look at him any differently. Luke, unlike the rest of the world, will see his brother for what he is, not what he isn't because he won't know anything else.
I've learned I can't change the way people respond to me having a special needs child. You can't force someone to feel things they don't, you can't educate them, you can't replace a cold heart for one that beats with love and understanding. Sure it hurts... but there are lots of things in life that hurt. You just keep picking up those broken pieces of your heart and you carry on.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.