Trying to put into words the emotions and thoughts that run through my mind and body, is like trying to capture the ocean in a bottle. I have so much I want to express, but it seems like I can't get the words to come in the right way, so bear with me....
Fact is: Ryka has SMA- yes we know this, but now I am SEEING this in day to day activities...
I have again learned first hand- that knowing and seeing- are two completely different things.
I knew this day would come. I knew it was going to be hard. But, I was not prepared for the emotions and feelings it has re-created and brought back to life.
Seeing my little girl struggle at 9 months old is gut wrenching. Talking with a friends about their children that are 1-2 months younger than Ryka, is heart wrenching. I have to turn away with tears in my eyes when they tell me that their baby was crawling at 6 months and now their babies are all over the place and getting into things. My baby - at 9 months old- struggles to reach forward, grab a toy and sit back up. It is all still so raw right now. It's like having the diagnosis all over again. When the tears come, it's not that I am un-happy for other babies, quite opposite really- I am thrilled their babies are able to do all the normal things, it's just that I ache to see my baby do the same. And then the ache in my heart is intensified when I realize yet again- her life with SMA will not allow that. It will not allow her to freely move- get into things, and explore her environment. Oh, it is so-so hard.
Before Denalli was diagnosed, the Dr. told me over and over that she was a "lazy baby". I wanted to scream in his face and tell him she was anything BUT a lazy baby. The determination and frustration in her eyes spoke volumes to me. She wanted to go, she wanted to move, to stand, to crawl, to get across the room-but she simply couldn't.... Now-5 years later- I see that same determination and frustration in Ryka's eyes. And let me tell you- it was hard to see the first time, but to see it again.... I have no words, just the ache in my heart.
October 24th was D-day for Denalli. I always wondered what 5 years with SMA would look like. Five years of living and thriving with SMA. Pretty sure, my picture of 5 years down the road of "then", is nothing of what "now" is like. I hoped and prayed for a healthy 6 yr old little girl, and I have that. Casey and I prayed God would bless us with more children free from SMA-we have three beautiful, amazing, healthy kids, with out SMA! Then our hearts were set on adoption. We felt God had a big adventure ahead of us. We started getting the house ready, and setting dates to begin the adoption process... Then we quickly learned that once again- God had different plans for our lives. His big adventure for us, was not adoption at this time, but a blessing by the name of Ryka Kathleen.
Ryka is a HUGE blessing in our lives. When she is with me- she is one of the most happiest babies in the world. Her big, big smile lights up every room we walk into. My mind knows everything will be okay, but my heart just needs to catch up. And it will... I know it will. There will be a day, when I can accept this journey I have ahead of me- without a tear in my eye... but not today.
I will smile because of the beautiful life that has been given to us.
I will cherish the moments- like the one pictured of her just waking up from her nap and coming into the light- showing off her "squinty face".
I will hold onto the memories of seeing this beautiful little smile every time she wakes up from a nap.
The determination and strength in her big blue eyes will keep me focused and fighting for the things that she needs.
And my dearest Denalli will help me fight for her and pave the way to a better life and future for both of them.
We will NEVER GIVE UP.