Making Sense

Because of the most recent move Layla has been assigned a new physiotherapist. Today was our first encounter. I was not excited about starting with someone new, yet again, but she is so great. With many years of experience, she seems very knowledgeable and came with a hands on approach. She was able to pinpoint so many things with Layla. Even moments after meeting her. One thing that stood out in our conversations was on vision. I mentioned to her how not long ago I was looking at old videos of Layla from 0-6 months and the first thing I noticed was how wide eyed she looked. Her eyes were big, open and looking around in wonder. I honestly had forgotten that she ever did this. My memory had been focused on other things, I suppose. All I can remember is how everyone always thought she was sleeping (and still does) because she looks down so often, only out of a small slit. I know for sure I didn't notice the nystagmus (eye shaking) until we were almost ready to go home from the long hospital stay. So I feel like something may have actually caused this to develop.  
The therapist was not surprised by my discoveries. She explained that Layla has closed off and gone inside herself to just survive because she had to. Apparently it's quite normal for children that have gone through the sort of trauma Layla has to react in similar ways. Having so many doctors and nurses coming at her, poking and prodding constantly forced Layla to learn to shut down because she lost control of herself. Not getting proper nutrition for a pretty decent period prior didn't help either. Then it became her new normal. Once it became normal, and with her low tone it became hard to even just open her heavy lids.
No one has ever presented that thought to me. But it totally makes sense. Now the hope is with working alongside the physiotherapist and the vision consultant we will be able to get her more excited about keeping them open. Make her new normal keeping them open again. I'm sure it'll be a long road and no easy feat but the fact that it's a possibility makes me very happy.

Being Proud

Last week I read a post by a mother who her lost her son at only a couple weeks old from a genetic disease. She wrote of his first few days when she mourned the loss of what she thought parenthood would be. The thoughts of Why is this happening to me? How sad I would be to have a son with disabilities. How sad I was that my son would die early. She realized how selfish many of her thoughts really were.
It got me thinking. Have I been selfish in my thoughts? Was I a bit embarrassed of Layla? I realized how almost all pictures posted publicly of Layla have just been of her close up beautiful smile. (She does have a beautiful smile.) But I'm not posting real life pictures. I never posted of her month long hospital stay last year. The days in the critical care unit where she was covered in all sorts of tubes. The surgery, the recovery and the countless tests. We have been back to the hospital many times since for emergencies and diagnosis testing. I haven't posted of her hospice stays, therapy appointments or pictures of her g-tube and medications, even though these are a big portion of her day. Don't get me wrong, I think there is a line with how much is shared for the whole world to see. And I do believe having a positive mind helps us get through tough situations. But it's sad that we often only see perfect pictures of people and their families which leads to a false comparison. We wonder why we aren't happy with our lives when we are constantly comparing with the couple who travels the world and seems so in love, or the mom who's hair and makeup is always done while raising 4 beautiful children, or the single friend who has an amazing job and seems to be living the life.. We don't see reality with these people. We don't see the sadness, brokenness or hurt that they carry. I, myself am often guilty of only putting up the best. I've tried to portray Layla as a typical child but the truth is she is not a typical child. Part of me does it so people won't feel sorry or pity our family. I want to seem strong and like we have it all together. But the truth is, we are far from it. 
As these thoughts swirled around my mind I put myself in Layla's shoes. Layla knows no differently than the life she has. She was born this way. She doesn't understand that it's not normal to eat solely by a tube. She doesn't understand what she should be doing at 18 months old. What about how her condition is effecting her life? She has a life, meaning and a purpose, just like we all do. I'm reminded of this quote I saw somewhere in the cyber world:

 Layla has more purpose than just fulfilling your motherhood.

Deep eh? I've been repeating when I start to feel sorry for myself. Because we tried for quite a while, and Aaron had to have surgery to just get pregnant, my mind switched to where I so badly just wanted to be a mom. I had so much time to envision what it was going to be like. My expectations were high. And then they were very disappointed. Life never goes exactly as planned and in our lives it's been far from it. Layla might not be who I expected her to be but she is my daughter. My flesh and blood. My job is not to just be her caretaker. It's to be her biggest advocate, her cheerleader and her mother. I want to encourage and help her reach her highest potential. That's why we continue the testing and fighting for funding and equipment. To make every day count. There are many children who have similar conditions to my daughter who are unsure how long they will be on this earth, and I've seen their families honor them every month. At first I thought it was a bit excessive but you know, why not? How many moms of typical kids write posts every month of the new accomplishments their child has made? It's kind of the same thing. Just a different sort of milestone. 
So I went on facebook and posted a picture of sweet Layla in her standing frame. I actually had it edited and commented on a few times, over a few days before I had the guts to actually post it. Why was I so nervous? I was so scared of what people would think. But I clicked that mouse. I didn't write a sob story but instead a brief post of how big she's getting. You know what the responses were? Way to go Layla! Look at her, getting so big! We're cheering you on! I didn't realize that so many other people would want to encourage her with us. Maybe it's not so bad to be a little more transparent with our reality? Maybe it will even help? Aaron commented about the photo right when he got home from work that day. He has followed my lead by not posting anything that makes her look different. So we talked for hours about her and the thoughts I'd been having. It convicted him aswell. 

Here is a picture of sweet Layla in the pediatric critical care unit, the day after we went to emerge last May. We went in so scared that we might come out without her.

It's hard to even think back on. I remember checking in at the emerge and the woman asked us to sit her on the scale. When I explained how she she couldn't sit the nurse asked Why? 

We don't know why. She never has. We were told she has SMA. 

We laid her on the scale and it came up 12 pounds 8 ounces. I asked her to try again because she was at the doctors two weeks earlier and had weighed 13 lbs 14 oz. (She had been that weight for 3 months.) The nurse tried again and it was still 12 lbs 8 oz. My heart sank. That couldn't be right. There is no way this little body had lost that much weight, that fast. Then the guilt set in. I should've brought her in sooner. 

That's enough of sad reminiscing for today. She's here. She's alive. She's laying across my lap and watching me type away. 

There's that smile. 

A Whole New World

Look at my baby girl.. STANDING! I've always tried to not even imagine her standing because it's depressing to be reminded of the fact that we have been told she will not. Having this frame gives her that capability and it sure is emotional. What I wouldn't give to have her able on her own.. She doesn't even look like the Layla I know. Doesn't she look so tall!? I wonder what she is thinking when in these new positions? What does the world look like to her now? The first few times we put her in the frame she only gave us tears but she is slowly getting used to it. If you look closely you can see that she is just a tiny bit too short for it so we've used chilli pepper coasters to give her that bit of height... whatever works right? Physio is going to try and get some ankle braces to help with support as the weight on her ankles and feet could be part of why she doesn't love it quite yet. 

 We are so fortunate to have the government fund a few assistive devices to help everyday tasks become a little bit easier and possibly help build Layla's muscle tone. For now we have the standing frame and stroller. In the next few weeks we will be getting a high/low seat for around the house as well as some sort of play mat. With these devices I should be able to do a lot more physical and visual exercises with Layla. Though she keeps falling asleep in the stroller so not sure how much learning she'll do in there.. but I can't really complain about that. When the therapists come over most of the exercises require two people. Now with freeing up my hands I will be able to do most of them on my own. Part of the goal as well is to have her be more stimulated in the day so that she might sleep more at night. I'm supposed to wheel her into the kitchen while I cook, bring her into the bathroom while I get ready in the morning etc and hopefully with the upright angle she can see a bit more than her usual laying down position. We're hoping to get her excited about having her eyes open, since it's so much work to open them wide. 

The special equipment is going to take a bit of getting used to. Aaron and I were discussing how having her in a special stroller might mean we will have people state less "Ooh she's sleeping!" I'm unsure of what the new comments might be. I assume that the stroller might speak for itself in a sense and less people will make their funny comments.
Last week one of her doctors said to Aaron and myself "What is new with Layla? What is she doing that she didn't before?" to which I replied "mm... nothing that I can think of." It's awful that I couldn't come up with anything. I expect some comments like that from random people but I was hurt that he of all people would ask that. If it was said in different wording it might not be as bad. In Layla's defence she has been sick for a majority of this winter season, which I'm sure isn't helping with any development. I am extremely thankful that Layla has been able to fight through the sicknesses so far. As her parents, it hasn't been easy taking care of her. Especially functioning on such little amount of sleep. Amazingly, her strength shows when she coughs. Her tone is is so low all the time but when she coughs or sneezes all her limbs flail and she gets out those secretions. Everyone is very happy about that! We spent one night in the hospital last week but that is it this winter. The goal is to avoid hospitals if possible to ward off catching any illnesses. Obviously that is the most common place for them. The last two nights I've gotten a little longer chunks of sleep out of this girl so fingers crossed we are on the up and up! Spring please come soon!