There was a cute little boy toddling around Relief Society at church today. He had blonde hair and blue eyes and he even snuck over and played the piano. Parker used to do that. I cried today. 15-16 month olds will always have a special place in my heart. 

We are getting ready for a trip to my sister's Labor Day weekend. Parker fell on a trip Labor Day weekend.

I just got a sweet note in Messenger last night that someone sent me when we were in the PICU and I didn't get until just now.

My other sister has a dear friend that just lost a family member to a fall and a TBI.  They buried him this week.

My baby fell two feet just shy of 2 years ago.

We are doing well... mostly.

Tonight I had a really sweet conversation with my six year old son. He was waiting for me to read him stories. As I was giving Parker his meds, Devin said "I wish Parker didn't fall."

I asked him if it was because he misses his playmate or if it's because bedtime take so long, or both. He said both. He said he wishes he could hear Parker speak and hear his voice, like his cousin that is the same age. He wants to hear his voice.

We talked for quite a while, and we cried together. I told him about the little girl that fell the same week that Parker did that did not survive, and how grateful I am that we got to keep Parker. And that I would rather have Parker with us any day, even if that means lots of therapies and longer bedtimes because of meds. Parker is sweet and happy and he loves his brother and sisters. Even if he can't ride his trike at the park.

I also talked to him about when he (Devin) was 2 years old and got really sick and I took him to 2 doctors and ultimately the ER. They gave him heavy duty antibiotics that did not work, and ultimately they did surgery. I was speaking to the surgeon after the surgery and asked what would have happened I hadn't brought him in. He said " he would have gotten sick enough you would have brought him in." He was sleeping 22 of 24 hours. How much sicker could he have gotten???

I am so grateful for the spirit that prompted me to go wake up my little Devin that day instead of letting him sleep. He was burning up and he pointed to his neck and said "neck hurt." There was a large bump on his neck and red lines and my mother's instinct said "hospital NOW."

The surgeon said if we had waited too long the infection (he had a retro phalangeal abscess) could have burst and spread to his heart and lungs and we could have lost him.

I was telling Devin just how sad and devastated I would have been if I had lost him 4 years ago and how much I love him, and how grateful we did not lose Parker. We were both crying.

I love my kids so much. And my husband. And I am so grateful for hospitals and modern medicine and that they have saved my 2 of my children's (and my husband's) lives.

I am so grateful.

Someone wrote this in response to a young mother's question on a CHASA (Children's hemiplegic and stroke association) Facebook support group that I absolutely love.

I love what this person wrote and wanted to keep it.

Paul Fulton

A few quick thoughts. Our little guy (RH) is now 8. The myriad of emotions that we have felt in the last 8 years are indescribable. We have gone from total despair to unlimited hope. We have blamed ourselves and we have recognized that we can't, only to return to blame ourselves again. We have never felt more weight as parents and we have never felt more joy as parents. Here's my point: Having a child with a disability is to be exposed to pure love in its raw and unmitigated form. To love someone so much that their struggles literally hurt you. To care for someone so much that all of your desires take a back seat to theirs. To desire happiness for someone so much that their success is continually on your mind. That's a gift (albeit, sometimes a miserable gift). We're all learning how to love purely and how to give entirely. Isn't that at least one of life's purposes? I think that I can also safely say that your little baby is going to surprise you and exceed your expectations over and over again. These kids have a fire within them that is like nothing you will have ever seen. It's inspiring to witness. It's so hard and so rewarding all at the same time. "That which we obtain too cheap, we esteem too lightly." You are a young mom 
who has learned at a young age to love entirely. Your baby is lucky to have you.