seven

We are in countdown mode for our late summer beach trip. We are so blessed that both my parents and Matt's parents include us in their beach trip every year and foot the bill for the condo. We would never be able to afford to go if not. Usually my dad rents for a month and we rent to family/friends for a couple weeks and use the rest of the time ourselves. My parents, the kids, and I usually stay sometime between 15-18 days, but this year since Briley is officially in K5 we are only letting her miss one week of school and I was jokingly whining about only getting 9 days at the beach this year with my family. My SIL said she would be crazy if she spent 9 days at the beach- that by about Day 4 she is ready to just be home. I reminded her that the Thomas' live from vacation to vacation, but I also explained that my people are my home. If they're with me I'm good.

And this guy? 

He is my home.

Today marks seven years that I chose him for life. Best decision I ever made. I know who my Savior is and I know that all the hard things I have gotten through are nothing but the grace of God, but let me tell you: I also know who put this man in my path and chose him to be my protector on this earth. I could not do it without him. Here's the other truth? I wouldn't want to either.

On our honeymoon in St. Thomas (overlooking Magen's Bay)... 

I promise, hubs, one day we will make it back there!

Matt, it won't hurt my feelings if life wants to slow down and we take up residence on Easy Street, but I somehow feel like as long as you're by my side (and we keep Jesus in the middle) we will make it through whatever else the next seven years throws our way. I love you so much. Thank you for being all the things I didn't know I needed. Thank you for being my best friend and the best father to our children. Happy Anniversary, love!

What's wrong with him?

We've been lucky. We've yet to be asked "What's wrong with him?"  I know it's coming. We've had variations of it- from the kid who asked, "What's wrong with his eyes?" to the "Why is he doing that?" to the stares. Like I said, I know it's coming. How to respond is my question. I was talking with a friend of mine this week... she's a few years ahead of us in this road and though their diagnosis is different she's "been there, done that" when it comes to a lot of the situations we're starting to face. Last week she got the, "What's wrong with her?" from a passerby. "Nothing. What's wrong with you?" was her response. I'm kind of leaning toward that one too. ;) I read another account of a dad who was shopping with his daughter. She was in a wheelchair. A stranger asked what was wrong with her... well in earshot of this child totally old enough to get it. "Nothing. Well, she's a little stubborn. What's wrong with yours?" Love that. 

I know some people actually care and want to form a connection. There have been many times I noticed a special needs child and wanted to reach out to the family and connect, but finding the right words without being offensive... that's HARD. I usually just smile and hope the conversation goes from there. It's not that I mind your concern or even curiosity... it's that the thought that because he is different means something is WRONG with him doesn't sit with me. He is perfect. And he is as perfect to me with all his needs as he would be without them.

I can probably thank the first diabetes educator I ever met for this mindset. I was a few days shy of 13 and recently admitted to Children's Hospital being diagnosed with type 1 diabetes. She looked at me, smiled, and handed me a gift with her words. "You are not diabetic," she said." "You have diabetes. It DOES NOT have you." So I didn't form my identity around being diabetic. Having diabetes is just a small part of me. That's what I want for River. I don't want him defined by a disease because he is so much more than a diagnosis. 

I'm going to share now... not what's "wrong" with him, but just a little piece of the puzzle that makes up my beautiful little gift. 

River was diagnosed with Cerebral Palsy when he was 8 months old. He was just a baby. We were at our routine neurology check up and the doctor mumbled some medical term under his breath as he was examining River. "And what does that mean?" I asked him. "CP," he said. 

I guess I was being positive, maybe I was being naive, maybe it was just an ignorant moment, but when he said "CP" so callously I honestly thought he just mean it was a sign that a CP diagnosis could be looming, or it was a symptom of CP, or something we needed to keep an eye on. I was sad to even think we could be heading towards that diagnosis (even though CP is such a broad "disease" and can range from extremely mild to severe). 

I didn't know till months later when I had to request River's medical records that he had actually diagnosed River that day. I found out sitting at my kitchen table sifting through medical records. I called him. I told him I would have appreciated a conversation before saddling my son with such a weighty diagnosis. He said he felt certain he wouldn't have diagnosed him and included it in his notes without telling me. I must have "misunderstood" he said. "Or maybe you weren't clear," I told him. Then he said it wasn't really a big deal, CP can be very mild. I gathered my composure and I told him, "I realize this isn't a big deal for you. I realize you deal with this every day in your job, but I don't. This is my son. This IS a big deal for us."

There's this thing called compassion. The matter wasn't that at 8 months old we didn't know what a diagnosis of CP was going to look like for his future. We didn't know if mild or severe was going to fit him, but did it really matter? It didn't matter to me. I didn't birth this child and imagine a diagnosis of CP coming. Ever. This wasn't just a patient for me, it was my son. My hopes and dreams rolled up into one little person. I needed to have my moment regardless of whether or not some doctor thought it was a "big deal". I needed to have my moment regardless of the severity of the diagnosis. 

We left that doctor by the way.

It's 7 months later now and though we still don't know what River's future looks like it's safe to say mild probably isn't the best way to describe it considering he isn't walking, crawling, or holding his head up at two years old. But it's still just a part of River. It doesn't make him or define him, but it does influence his life and our decisions.

So why CP? How'd that happen? The brain damage caused by River's brain bleed in utero led to his diagnosis of CP. It's likely the motor control centers of his brain were damaged and so that usually manifests by delays and disturbances in the movement of one's body, but it can also cause problems with vision, behavior, cognition, etc. It really all depends on what area of the brain were affected... and with River, it is a lot of areas. There's no cure for CP, it's not contagious, not progressive. The best way to treat is with therapy, therapy, and more therapy. ;) That's why we are enrolling River in a preschool type therapy program on top of the therapy he already gets through Early Intervention (which is PT once a week, OT every other week, and speech once a month.) It can do nothing but benefit him. There are some meds to treat the symptoms of CP and River is on a couple, but by and large we have found the best thing for him is therapy. That's why we use a gait trainer, why we have a wheelchair, why he needs braces for his feet/legs, etc. 

So if you ask me what's wrong with River I might tell you he's a little rotten or he fights sleep like a hot mess. I might tell you he's incredibly stubborn for a two year old. I'll probably also tell you he's been one of the biggest life lessons I've ever had, that he loves music, and is generally (finally) a happy kid. I won't tell you he has CP... because it's not wrong. It's just different from you and me.