I knew this moment would be hard. I knew my fears would come racing back. I am afraid this is the beginning of more tests, more doctor appointments, more worries. Ever since we were originally discharged from the hospital with Will, life has been amazingly normal. The fear of the unknown is always quietly lingering in the back of my mind. Each time I pick Will up, I feel my fingers grasp around his chest and a lump comes into my throat because I feel how small his chest is. Sometimes when I change his diaper, I measure his chest and the lump comes back again because his chest doesn't seem to be growing much. I focus so, so, so very hard on being thankful. I pray out loud several times each day for Will's health and I thank God for his love and the amazing gift he has given to our family with Will.
|A picture of Will and his big sister from this morning|
BUT, this is hard. I realize that our journey with Will has been easy compared to others. When my feelings of fear arise, I try to remember that there are many people out in the world who have been unable to have children or who have lost children or who are fighting to keep their children alive. I have Will here and he's doing blessedly well. In fact, sometimes I feel downright greedy for the feelings of desperation I get about wanting to keep Will healthy and growing the way he should. I find myself begging God to continue helping Will. The truth of the matter is that I'm just not sure what I'm supposed to do and I question whether I'm even doing all the right things now.
I guess the real lesson in this journey so far is actually a pretty simple one. Put your faith in God, love your child with all your heart and allow yourself to live freely in each moment. Treasure them. Hold them tightly. Look in their eyes and profess your unending love and devotion. It's the simple things.
So, yes, I am worried about Monday, but I know these results won't really change anything. Will is an amazing little miracle boy and I put him in God's hands many, many months ago. I have to remember that we aren't in control. As Will's parents, our job is to keep him safe, love him limitlessly and teach him how to live his life with abundant grace and love.
I found this verse last night on this mom's blog. Her family lives near where I grew up and she has a seven year old son with Down Syndrome that has been fighting a battle with stage four kidney cancer. They are a true inspiration to me.
So, I'm singing today. Not very well, but I'm singing. I've cried happy tears. Tears that Will is here and he's doing so amazingly well. I pray that the coming days allow us even more opportunities to live freely in each moment without the worries about tomorrow because not a single moment should be squandered away with worries we can't control.
I also wanted to be sure any readers also had an opportunity learn more about Madden. He's a little boy in Florida that was born just twenty-three days after Will and he has also been diagnosed with Jeunes Syndrome. Take a moment and go read more about him and his miracle story by following this link.