Friday, April 1, 2016

2 years since D-day

Today, April 1st, 2016, marks two years since our Lilygirl was diagnosed with Type 1 SMA. The day that changed our lives forever and turned our world around. Today wasn't a sad day for me, as it has been in the past. Maybe it's because I was home with two kids and didn't have a lot of time besides caring for them to sit and think about how terrible the news was that we received 2 years ago on this day. Or maybe its the fact that our Lily is still here with us at 2 1/2 years old, defying the odds, despite the news that we were told. She is healthy and doing so well and she is just like any other toddler her age-trying my patience, sassy, opinionated, but so sweet, pretty, and so funny! That is what I was thinking about today and have been lately. This girl-she is strong (and not just mentally) but we feel that she is strong physically. We are blessed that Lily still has the ability to smile and that she has so many facial expressions she gets to share with us (most sassy scowls and eye rolls, but hey-I'll take em!) She may not be able to sit up or stand or walk, but we treasure the movements that she has---the shoulder wiggles, the subtle waves of her hand, the wiggling of her toes, the wiggling of her legs ---all movement that we do not take for granted now because of sma and what we were told it would take away. Well SMA-- we still have our girl. You may have taken away a lot of her mobility, but you can't take away her personality and her sass and that smile---I hope and pray that never is lost! You can't take away her love for life and her love for her bubs cat and her brother! She just loves watching him move around and make all his funny baby noises---it makes her giggle and that is music to this mommas ears.

So today on this diagnosis day---although I am saddened that we ever had to hear the words "your daughter has SMA", we have so much to be thankful for and we are blessed with two beautiful children that are healthy and thriving. Thanks to you all for your support and encouragement. I know i haven't blogged in awhile and haven't updated since before having our son Ethan, but he also is doing well. He is a healthy 5-week old little boy that loves to eat and sleep and be snuggled. Lily seems to be thoroughly enjoying his company--at least until he starts taking her things and pulling on her gtube, her hair, etc. Its so fun to see them together and listen to her giggle and see her smile while he lays next to her! Praying that as he gets older and gets more mobile, we can continue to keep them both healthy and doing well. One day at a time! That's all this momma can do right now. It has been a bit crazy lately adjusting to life with two kiddoes and one with a lot of medical needs and monitoring, however, I am grateful we have been entrusted with these two children and know we are in for many great adventures in the future.

For those of you prayer warriors, please continue to pray for health for our family. Please pray for rest for mom and dad, as well as both kiddoes, because we know how being sleep-deprived can lead to craziness. Please pray that Lily would continue to grow and thrive and avoid any germs as the flu season comes to an end! We are looking forward to getting out and enjoying nice weather in the upcoming days!!

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