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.