What's Not To Love?



Now, when I’m asked to describe myself, the first thing I tell people is that I’m a mom to an amazing three-year old daughter with special needs. However, that has not always been the case. Several years ago, if you would have asked me that question, the first words I would use to describe myself would be an attorney. It is a career I worked hard for and am very proud of. One of my favorite areas of practice has always been estate law. And while I was pregnant with our daughter, I helped a special needs mom gain guardianship over her adult daughter that has Cerebral Palsy. As part of my case prep we discussed what brought about the medical condition… complications during the child’s delivery. It broke my heart to hear that my client had a normal healthy pregnancy, and if her delivery had been different, she would not have been sitting in my office that day seeking a guardianship. It shook me that something so routine could change a healthy child’s life in a matter of moments. I prayed that night for God to protect our child from this type of situation because I didn’t think I had it in me to be the amazing parent and person that my client is. I did not think I was strong enough to raise a child with special needs.

Sometimes it doesn’t matter how much you pray or how much you plan, life has a way of taking over and reminds you that you are just a long for the ride. Three years into parenting a special needs child, and I wouldn’t change it for the world. It still amazes me how time and experience can change us. Sure, most days it is not glamorous, but in reality, no form of parenting is truly glamorous. No one is ever really ready to have child with special needs. Especially, when it comes as a complete shock from an illness after birth. When it comes to children with special needs, you mainly hear and see the bad side of it. But there is so much good too. I typically tell people who as the question, “how do you do it?” that raising a child with special needs is not bad, it’s just different. And everyone has something hard in their life they are dealing with … this is our hard.

These day, I wear my special needs mom badge proudly, and I have truly grown to love it. My daughter is “non-verbal” but you wouldn’t really know it. One of my favorite things to do is have a conversation with her. Sure, most of the time I don’t really know what she’s saying. But you can tell she means it and it is a serious. Then there are those rare times (that are becoming a little less rare) when she calls for me or answers a yes or no question. Those times give you hope that there is much more to come.

I also love her smile, and something that is fairly new, her laugh. I wasn’t sure she would ever smile, but at eight months old it started and it is rare to see her without one on her face. And the sound of her laughter brings my heart pure joy. It was a sound I did not think was possible. But now it’s even becoming a regular thing, and that is the best feeling.

Good things also take some adjusting to at times. Having a child with special needs requires me to be more personal and conversational with people. Years ago, I rarely talked to strangers and I would never be caught striking up a conversation with someone I didn’t know. Not anymore. Our daughter loves personal interaction, and this draws people to her which in turn draws people to me. But I have grown to love that too. I am so proud of her, and I love to share her progress and accomplishments with others. It gives me a chance to educate people on things like therapies, speech devices, and wheelchairs.

I’d have to say though, that what I love most about parenting a child with special needs, is that it has shown me time and time again that I can overcome things I never thought possible. My husband and I both have come a long way from receiving bad news in a PICU room. It hasn’t been an easy journey, and there is still so much more to go. But it has been the best journey of our lives, and I could not image our life without our daughter. She pushes us every day to be stronger and it is inspiring. Who couldn’t use a little more of that in their life?


I think about it sometimes and wish I could go back to that conversation with my client several years ago, knowing then what I know now. I would make a point to tell her what an awesome mother she is, and this time I would not take pity on her because I now know that she doesn’t need it. I would also pray a different prayer that night. I would still ask God to protect my unborn child, but I would also pray that he guide me to my inner strength that I now know I have, to raise a special needs child if that is his will.  The most rewarding part of being a special needs parent is the capacity at which you find yourself able to love and the compassion that it allows you to have for other.  It is truly incredible.  

Published by Firefly Blog on September 20, 2018: https://www.fireflyfriends.com/us/blog/whats-not-to-love/

Comments

  1. Hi, I just read your blog on firefly about trick or treating with your beautiful daughter (and she really is beautiful).
    I have just returned from trick or treating with my 4 year old daughter who has quadriplegic cerebral palsy and she absolutely loved it. Last year I was having the same dilemma's as you where writing about but decided to take her anyway and I am so thankful I did as it is now a wonderfully new tradition that my daughter loves and she even had two separate people stop in cars to give her money (an unexpected bonus of having a cute kid in a wheelchair) so she will also be getting a new toy aswell as all the sweets she got.
    My attitude nowadays is as long as I can find a safe way to include her in everything possible I will find a way and hopefully educate/normalize other people along the way to another amazing special needs child in our community.

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