Special Needs Spotlight: Leah

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Maren: To be completely honest, it took some time. And it still catches me off guard every once in awhile. My husband and I definitely went through a grieving process and have mourned what we once envisioned our daughter’s future to be. Our day-to-day life is much more intense (for lack of a better word) than what it otherwise might be, but because she is only physically handicapped, we still have a vibrant, vivacious, happy, hilarious, gorgeous, giggly, smart and silly little girl in our lives each day. 

Maren: Leah’s life can almost be compartmentalized into three boxes. Her first year was a dream. Serious bliss going on. She slept through the night at just a couple months, was happy and healthy and so easy going. She loved books and could just sit in a pile of them for hours each day. She went wherever I went without a fuss and just smiled and giggled at everyone that crossed her path. She was gaining a great vocabulary of animal sounds (even unique ones like a hippo, hyena, lizard and crow) as well as regular words. In fact, her speech was a bit above her peers for such a young age. Her second year we were mainly dealing with gross motor delays. We’re not sure this had anything to do with Rett syndrome other than the fact that she had low muscle tone. But, after some therapy and lots of work and creativity on our part, she learned to crawl at 19 months and walk at 26. Her first “step” was actually 26 steps straight into my arms. And we may have used a jacket and shoes – her favorites – to bribe her there. It wasn’t until after she started walking that we really noticed a few other things going on. She was already in an early intervention program due to her walking delays and it was her teacher there that suggested we get her tested for Rett syndrome. She was losing words daily and she wasn’t sleeping at all. She would scream each night and we could do nothing to calm her. Living in an apartment, this was really stressful, so we spent our nights driving her around town and trying (usually unsuccessfully) to transfer her from her car seat to her crib. She was only presenting maybe half of the symptoms, so we were really getting her tested it to rule it out. But as the weeks wore on and we waited for the results, I knew deep down this was the monster we were dealing with. She spoke her last words about a week before I got that devastating phone call that dropped me to my knees all alone on my kitchen floor. The Rett diagnosis wasn’t necessarily a surprise, but in a way, it meant that our hopes that this was just a little developmental delay that could be overcome were dashed. Two years have passed since that day. I still find myself getting a little sad on some days – times when I wish I could hear her tell me what’s making her laugh or what she learned in school. But her new life has become our new normal, so I don’t think about it as often anymore. Each day we learn how to better communicate with one another and I’m positive it can only go up from here.

Maren:  I think her needs affect my day-to-day life more than they affect my overall life, if that even makes sense. Overall, I have a sweet little girl who I wouldn’t give up for the world. But daily, I feed her each meal, change every diaper, bathe her, clothe her, help her up and down stairs (and basically anywhere she needs to be, really) and lay with her at night until her body calms down enough to sleep. I speak for her and try my best to guess her thoughts and needs and wants and desires.

Maren:  My biggest worries often stem from the fact that she is mentally able, but physically disabled. She is basically trapped in her body with no way to communicate her own unique thoughts or protect herself from harm. I worry she will be made fun of – and that she’ll understand. I worry she’ll be overcome with what she can’t do – and she’ll understand. I worry she will be taken advantage of. I worry she’ll want to date and marry and have a family someday – and she will mentally comprehend that she can’t because of her physical limitations. I worry that people will treat her like a baby forever. I do worry a lot. But I try not to let those worries take over.

Maren: It isn’t all doom and gloom around here. Leah is seriously hilarious. She has such a great sense of humor and, ironically, she is often the one who snaps me out of my poor-me ruts. One of my very favorite moments with her can be found here. 

Also, my husband and I consider Leah our big secret keeper. If there is every any information I have that I just have to tell someone, I tell Leah. And I always make her promise to not tell a soul. She always smiles when I do that.

Recently, we were watching The Little Mermaid together. I suddenly became very aware of the fact that the sea witch took Ariel’s voice – just like Leah’s voice was taken from her. We started to have a “discussion” (it’s pretty one-sided, but she does participate) about this. I remembered that one of the first words she lost was opatus (her version of octapus) so I joked that I finally figured out what had happened. Leah made a deal with the sea witch (an opatus) and the sea witch took her voice! So now, we were on a quest to find her so we could eventually get Leah’s voice back. It was a simple conversation, but you should have seen the look on Leah’s face. She thought it was hilarious.

We’ve decided as a family that if we don’t laugh, we cry. And if you just take a second to look, you’ll find there are still plenty of things to laugh about.

Maren: I think the thing that bothers me most is when people simply ignore Leah. They think that because she can’t talk, she can’t understand or participate in a conversation or experience. Leah is so aware of what is going on around her, so if someone does this, I often turn to Leah and bring her into the conversation or situation myself. If they ask a question and I know it’s one she can answer with eye gaze, I usually bend down and ask Leah myself.

Also, so many people treat Leah like a baby. They talk to her like they would a one year old, not a four year old. She’s still a child, yes, but she’s not a baby.  I don’t think criticizing or calling others out is necessary. Because really, there’s no way they should know this kind of information. It’s all about me teaching them and showing them how amazing Leah really is. When I lead the way in a positive manner, I’ve found others naturally follow suit. 

Maren: Oh man, just one!? I’ve learned so many things and have been humbled in so many ways. I’ve learned that life really is not in my control. It never will be. I have no idea what the future holds in regards to Leah. Realistically, there could be a cure for Rett syndrome in her lifetime (they’ve actually reversed it in a lab!!!). But there might not be. So I need to be okay with my life as it stands. Different is our normal now and that’s okay.

I’ve also become very aware of others. I might not be perfect in the way I act in every situation, but I do try to observe and be aware of others and their needs. I’ve learned that everyone is struggling with something and I should never judge them based solely on the information I have because there is always more to the story. Every person deserve kindness and respect.

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