This summer has been a hard summer. Not going to lie. The hardest summer I think I've ever had. For the people that are close to me and know me I don't seem like a shy person and not a private person :-) but going through the journey of SMA with Lily and experiencing the emotions I have felt lately-pain, sadness, despair, has contributed a little bit more to me being a private person. Sometimes it's just hard to talk about what we're going through and feeling. For those of you that have a child or have had a child that has faced a terminal illness or disease, you know what I'm talking about. There is a lot of grieving---every day. Some days are really good and I feel like I am happy and enjoy Lily for the happy, sweetest little girl she is. Other days I am just so sad about what she has to go through. But we literally just have to take things one day at a time. And one hour at a time even. And just pray for strength and hope. And most of all, for a miracle for our sweet little pea. So for those of you that have sent cards, words of hope and encouragement, brought food, left food at the church---sent texts and called---thank you, thank you, thank you!! They mean so much and I'm sorry I'm not better at getting thank yous out. Someday I will :)
It's hard to believe it's already the middle of July because I feel like our family hasn't even experienced "summer life". Whatever that is haha. But having a daughter with SMA means thinking a lot more about going places and what kind of germs those places, people at those places have. It's definitely a life changer. But as we get more comfortable with all the changes we have had lately (g-tube, feeding pump, bipap, etc) it will get easier to get out. Lily now uses the bipap (nasal breathing mask) at night now, which allows her (and mom and dad) to get better sleep. She was having problems dropping her oxygen saturations before she had the bipap and now she keeps her sats up and just seems to rest better overall. We are so thankful for how well she has tolerated the bipap mask. We put it on her tonight and it was the first night she didn't cry. She just hung out and then started making noises and smiling. Sometimes I am just amazed at how happy she is. Even after all she has gone through--she is just content. She is teaching me a lot about what it means to be truly happy and content...no matter what the circumstances.
We thank the Lord every day for another day to be with Lily and to enjoy her. Each day is a gift and we are so happy that she is such a happy girl. She is happy she gets to see her mom and dad and grandparents and read books and watch cartoons and play. What a sweet little girl.
We have felt an outpouring of support from family, friends, church, etc. Thank you all for however you have helped again. We thank you and we love you.
This is the face she gives all the nurses and Dr.'s when we go to Iowa City.
Snuggles with Gma Stewart
Our girl is getting so big-hard to believe she will be one year old soon!