Wednesday, January 4, 2012

My Life as a Special Needs Mommy

2011 was a year of learning, growth, maturing, and evolving for me, personally. My family has been deemed a "special needs" family for less than three months (although I know we were that at the moment Ava was conceived), but in a way I feel like this has been my life forever. Maybe that is just me coping. Maybe it is because I have been being prepared by the Lord for this my whole life. Whatever the reason, I see things so differently now. With so much more perspective, I think. Over the last two and a half months, I have learned things I never wanted to learn, experienced things I never wanted to experience, and have had my feelings unintentionally (and a few times, I think, intentionally) hurt more times than I can count. And it is through these eyes, and with those experiences, that I write this post.
My life has changed dramatically since the day we learned of Ava's diagnosis. Which, in a way, I find funny. Because really, *nothing* has changed! We still love our daughter, have the highest of expectations for her life, and think that she is the best thing that has ever happened to our family. But I now see everything in the shadow of this disorder, and sometimes that shadow is darker than others. But I choose to do my best to see the positive side of things, with the Lord's help. I have always tried to be an optimist. Life is just happier and more fun that way! And it isn't easy. Being happy and positive is work! But, especially in my new role of special needs mommy, it is a survival technique that I have learned and cling to each and every day!

In the instant I learned that Ava had AS, my life was turned upside down. I went from having a relatively simple life to one filled with doctors, specialists, genetics counselors, paperwork, books, listservs, facebook groups, foundations- all geared toward AS support, awareness, and treatment. Thank the Lord for these things, but they were and still are at times overwhelming, and sometimes I just have to walk away from it for a bit. Dealing with Ava is a handful, and anything that adds to that gets placed on the back burner often. I hope to learn to juggle those things better. Included are things like my crafts, my love for home decor (Cole isn't too sad that my focus isn't on that these days), and my love for thinking of and doing for others. Things I miss and I consider part of what makes me who I am, and I look forward to the day I can do those things at full speed again AND be the kind of Angel-mommy Ava needs me to be.

Without spending time with Ava, it is hard to describe our daily life. Life with an Angel is nonstop movement, heart stopping moments, and lots of love and kisses and laughter. Basically, it is life with a typical toddler with 1000x the energy- typical moms reading this will roll their eyes and think "she hasn't met my child"...but everyone from her doctors to the specialists to the strangers in grocery stores can assure you, her energy level is beyond that of typical human ability!!!! Angels are known for their hyperactivity, and Ava is no exception! She is constant movement, and her movements are fast! And she is, a bit atypically for AS, incredibly strong. Not yet two years old, she is able to pull herself up using only her arms and hands (off of her feet, like an adult would do a fingertip pull up). Her abs are insane, and she can dangle in a balled up position (something she does when we are trying to work on walking and she refuses) much longer than I can hold her weight!

Life as a special needs mother means little time to do things I want or need to do. Sometimes just getting time to sit down and pay the bills or make appointments is a challenge, and my sweet friends have learned that they sometimes just have to talk to me with Ava grabbing the phone and yelling in the background! Each week, I think of places I would like to go, and more and more often, I think "oh I can't take Ava in there!" I know the typical moms reading this are thinking "hey! That just sounds like having a toddler!" And that is true. But the fact is, a typical child will grow out of that, and being the mother of a typical child, you will eventually get to a point where your child is self sufficient and able to go places and do things and you are too. I will never reach that point with Ava. She will *always* need to be cared for and looked after. My life is just different.

A dear friend who is also the mother of a special needs child commented to me on Facebook the other day that she hated that I was in that world with her, but at the same time she loved that I was in that world with her. And I totally understand that. While it is a life that you would have never pictured for yourself, the wonderful people and the amazing amounts of hope and love and generosity are astounding. When I first learned about Ava, I read the poem Welcome to Holland and just cried and cried. I was still focused on loosing my trip to Italy. But each day I wake up, I see more and more the glories of being in Holland. I cry less, hope more, love always, and guard carefully those that are in my life.

I have felt the need to write this post for a while, but wasn't sure how best to approach it. Mentally, I have been writing this post for a few weeks. But I figured now is the time to put my thoughts to the virtual page, and just write it out. I would first like to start by just saying that this post is not directed at *anyone* and is not meant in the spirit of ill will or malice. Quite the opposite, actually. The purpose is to help my friends and readers alike know what to say and how to approach not only me, but perhaps others that have special needs children. Some things may sound a little harsh to you, some things may not make sense. And that is fine...these are things from my perspective in my role as a "special needs mommy."

*"So, what is Angelman Syndrome?" Okay, there is absolutely nothing wrong with this question at all. And I am happy to answer anyone who asks it as best as I can. In fact, I would rather answer it and other questions for someone than have them run off to Wikipedia and become "experts" and then try to tell me how to help my child. But I always have to pause to answer. Because I never know what the question means! Technically, AS is a deletion or mutation of the ube3A gene on the 15th maternal chromosome. But I doubt that is the answer people are looking for since, if you happen to have a PhD in genetics, you wouldn't be asking the question. On the other hand, how do I sum up my bright, happy, loving, amazing daughter at the checkout stand or in the middle of Lowes? Do I give them the hard answer- seizures, lack of speech, lack of motor skills, severe developmental and intellectual delays. Or do I give them the sugarcoated answer- "She will always have severe delays but she will also always be happy- which is part of AS too!" Cole says that is what people want to hear. But it is hard for me, because I have such a desire to educate people about AS and want everyone to know- and care- as much as I do.

*"Oh, my sister's roommate's brother's friend's cousin's neighbor's stepbrother's son has something too. So I know it must be so hard for you!" Okay. I know that you might just be trying to empathize with me. But you telling me that you know of someone else with a special needs child (which is a broad and varied world) doesn't, in any way, help me. Unless that mother has had similar experiences and wants to talk to me about how to handle things, you knowing someone else isn't really all that helpful. To oversimplify, it is like you getting a bad haircut and me telling you that some random person I know also got a bad haircut. Doesn't really make fixing your hair any easier! Same principle although infinitely more important.

*"Oh, all toddlers are like that!" All toddlers may very well be messy eaters, or play in the toilet given the chance, or put everything in their mouths, or whatever. But "all toddlers" will eventually grow out of those things, my child will not. So knowing that she is on task with her peers only serves to highlight how quickly they will leave her behind. Something that hurts me and cuts me to the bone, and that I get very upset over. This is one that, as much as I try, I still cannot always stifle my emotions when someone says something to that effect.

*Comparing my child to yours. OH MY WORD. Probably one of the worst things to me. Ava isn't typical, but even if she were, children are individuals and each develop and grow at their own pace. Having Ava compared, in any way really, to typical children is so hurtful to me. Do not use my child to feel better about your own.

*Being advised on having more children. We have talked to our immediate families and a very few trusted friends about this topic, as well as doctors, specialists, and genetic counselors. And it is our decision to make. One misconception is that all genetic disorders are inherited. They are not. Ava's is not. Her's is a completely random event that happened at the moment she was conceived. It was nothing I did, nothing I ate, not the flu that I had, nor the medicine I took. I could not have prevented her from being born with Angelman Syndrome. Our next child will only have a 1-2% greater chance of having AS than the average child born each day, and that increase is a "theoretical increase" based on several variables, which we do not know even exist in my body.

*"My child has mild developmental delays, so I understand how you feel." I know how hard it is to think something is wrong with your child- remember, when we started down this road, we were told that Ava had general global delays and would grow out of it. And when I thought that was what was going on, I remember thinking about my few friends at the time with special needs children who have lifelong disabilities and challenges, and just hurting for them, because I was so upset over just delays! Which seems so silly now. I guess because I am on the other side of that "special needs" line. And the person I was before could not comprehend, or understand how much I couldn't comprehend, what it is like to be the person I am today.

*Telling me what I can do to help my child. I have spent hours reading, talking to therapists, specialists, doctors, and other AS parents, learning about ways I can help Ava achieve more and be the best little Angel she can be. And overall, I appreciate friends letting me know about new and different therapies and treatments that they hear about. But every once in a while, I get a "you really need to be doing this for her." or "if you would just do this, she would be getting better." These mostly come from people that have spent little to no time with my daughter, and just as typical mommies are annoyed by unsolicited advice, special needs mommies are annoyed too. And offended...because hello? Do you think there is a website or book or magazine article about our child's condition that we haven't read?!?! All of the special needs parents that I know, and Cole and I, pretty much live and breathe our child's disorder. And if it is out there, we have tried it, want to try it but can't get a doctor on board, or have ruled it out for good reason.

I certainly don't want people to hesitate to talk to me, afraid that they might hurt my feelings or step on my toes. I don't want to be that mom. Like I said, I almost always am able to look at and take in the spirit of what is being said, regardless of the words. But I hope that this list helps people without special needs children to approach a world that is unknown and unique in it's own right. And I hope that it gives you a bit more insight into my life with a very special, amazing, perfect Angel. She is a light in this world, and shines so brightly to everyone who meets her!

 

4 comments:

Julie said...

Rachel..

This is a beautiful post, and I relate so much! (I found you through Kelly's corner..I'm the one who replied about having to have the wheelchair talk at therapy today). I can so relate to the sadness, frustration, and tears. I would never, ever, in a million years NOT want to be Bella's mom, but I HATE this disease and what it's robbed her of (we are still undiagnosed although our neuro is leaning towards a neurodegenerative disease). Anyways..I could go on and on! Just wanted to let you know you are not alone at all!! This is such a hard, tough road. I really like this link (the author wrote in response to the Holland poem). I can relate to it so well. http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

Sending prayers for your family and your sweet girl! She is adorable! (Bella has that same striped sweater). :)

The Brewers said...

Hey Julie! I am so glad you enjoyed the post. Us special needs moms are a different breed! ;) It is a hard road- please know that I am praying for you and your adorable sweet girl! Thank you for sharing that link, and it is so nice to "meet" you!!!

Laurie said...

I LOVE this post. I hope you don't mind if I share on the world wide internet? It explains so many things I'd like to say, but so much more tactfully than I could ever possibly do. Thanks for sharing about your sweet angel.

motherof5boys1girl said...

i can relate! my sweet francis doesnt have a diagnosis, but he is deaf, has no fine motor skills, is moderately mentally retarded and cannot eat..we dont know why..we do know it is most likely permanent..we knew something was up when he was about 7 months old, when he was lagging behind on certain things. he only recently learned to hold a bottle and wave, but he still forgets from time to time..its so hard! and when people try to compare their high functioning teenager with aspergers to your little one on a feeding tube that cant communicate anything with you whatsoever, it does get a bit old.