Love for Lily Grace: Happy Birthday to my sweet 2-year-old Lilygirl!!

Feeling lots of emotions today as I think about my big girl turning 2 tomorrow. We weren’t even sure this day would come—we were told most likely it wouldn’t. According to statistics, 90% of children with SMA don't live to see their second birthday, however, with medical advances and increasing research, clinical trials and life saving equipment are more accessible than ever to help us win the fight. And thankfully, we can say that Lily is winning that fight. It is a day to day fight, but we are blessed and thankful to say that we get to celebrate her second birthday. Feeling grateful for that, yet also feeling sad and hurt for the families that don’t get to see their child reach their second birthday, or even their first. Yet another child with SMA passed away this week. Please continue to pray that the drugs available to children in trials now become accessible to all children soon. With SMA there are no guarantees ; that is why we continue to just take one day at a time.

Tomorrow we will celebrate Lily’s birthday at home and then we are having a big birthday party for her at Gpa and Gma Kramer's house on Saturday. It will be a lot of fun and Lily will get to see lots of family and play with her cousins, which she always enjoys. Last year for her first birthday, I was in a much different place (physically and mentally). I was worn out, tired, and just stressed/anxious. We had a crazy summer with Lily being sick, in and out of the hospital, in addition to her gtube/nissen surgery, bipap trialing, etc. Levi and I were running on low. This year should be a different story. Not that I’m not tired and at times stressed :-) (who isn't!!) but we are in a new normal for us. We are in a good routine with Lily and we are “used” to SMA. We have embraced it, because really-what other choice do we have? We have chosen to do everything we can to keep Lily healthy and strong.

So looking back over the past two years and what we have been through, compared to where we are at now----wow, surprisingly we made it. Some days I truly wondered if we would. And we have a happy, healthy, sassy and increasingly independent two year old girl that brings us SO MUCH JOY!

Here’s to two year old Lily and some of my favorite things about my little girl:

1) Her smile-thankfully Lily still has the ability to smile and whether its her toothy grin or just her smirky smile, it just makes me happy every time I see it. I hope she never loses the ability to smile at me but for now, every day I will cherish it.

2) Her giggle-her giggle may be easy to miss if you’re not around her much, but it is adorable---its not a hysterical cackly kind of giggle because she doesn’t have the strength, but it’s a subtle throaty giggle. I love that she has a humorous side to her and she can enjoy laughing at things that she likes (like kitties, cartoons, when mom runs into things, etc)

3) her snuggles-due to her secretions and inability to swallow, Lily needs to be laying down the majority of the time with her head turned to the side, but she will tolerate short periods of being held (not completely upright of course) but snuggled in my arms. Nothing is better than being able to be close to her and smell her hair and kiss her sweet cheeks. Since I can’t pick her up carry her/snuggle her chest to chest, this is the absolute next best thing

4) her growing independence- and I hesitate to write this because she has been testing my patience lately with her growing independence. But yet it also reminds me that she is just a toddler. She wants to do things on her own and she wants to do them at her pace. I was making a bday cake for Lily earlier today and had her help me pour the ingredients in the bowl and stir. When I took the bowl from her and the spoon to stir it and pour the batter in the pan—major fit! I need to remind myself that she is just a toddler and she doesn’t want mom to help or do things for her-----just so hard to meet that balance because she does require my assistance with pretty much everything!

5) last of all, her strength. I was talking to my sister about this last night. Lily is such a strong girl and I know many parents say this about their kids that have SMA-they are strong. They are stronger than many adults you meet -they have generally been through a lot in their short lives already and yet, they persevere. They do not give up and they do not lose hope. Things do not come easy for Lily and she has to have help with everything. I can’t imagine how frustrating that would be. Of course, her toddler 'tude is becoming more apparent, but nonetheless, she is patient and she is so strong. What that girl lacks in muscle, she certainly makes up for in determination and mental strength-I can learn so much from her!

Can’t wait to celebrate my two year old girl tomorrow. So grateful for this milestone and the wonderful little person she is becoming.