Momma. revisited

I made an entry during September of 2012 about Kimberley and her experience dealing with a newborn who has CP. I was going to post a new entry about yesterdays big doctor visit but after re-reading the post titled "My Wife-His Mother" I've decided to provide an update with regards to it. I hope you enjoy.

You can revisit the old blog entry here, I encourage you to give it another look.
http://prayersforcash.blogspot.com/2012/09/my-wifehis-mother.html


The damned measuring stick keeps getting adjusted. It may be one of the most difficult parts to understand your child's growth. I mean even for a parent of a "normally developing" child, isn't this a pain in the butt? One year at school your kid excels in every way-seemingly without a drop of sweat they breeze through the year with straight A's, a couple 3 pointers and lots of spiritual growth; then the next year you look at them at some point and ask, "Who are you?" "What the hell happened to last years kid?" No? Well, heck I guess it's just me then. There are times when Savy is on a roll, kickin' butt, then all of a sudden BOOM, she just can't get her crap together. We all have our ups and downs I suppose, but typically we kinda know what our children are capable of from one day to the next with rare surprises.

Por ejemplo, Savy tells me she's going to do the high jump in track for school. Now I aint sayin' she can't, but the girl is knee high to a grasshopper on a good day in heels. The typical jumper is long and leggy, tall even and above all else-a real athlete. Savy likes to wear cheerleader uniforms with a bow in her hair. She looks darn good to. She loves football, which doesn't hurt seeing as she will spend 75% of her cheer career watching the game, but she doesn't have to run or hurl herself over a bar taller than her head. Feel me?

Ok,, back to what I was saying, the measuring stick can stick it. One day we see Cash running in his gate trainer across the room, smiling and opening doors and the next day he won't pull his knees up under him to learn to crawl. Meanwhile we have to get him to do his best and hopefully get him mobile. There's a job to do but you never know when your days work is over.

Kimberley, has a long measuring stick, as discussed in the previously mentioned blog entry,
She is methodical, engineer'ish in approach, practical and reliable. She is a rock. Nope, she is a cave. She is made of rock, but has little secret passage ways, caverns and a small opening out front to keep all those twisting tunnels safe. She keeps us all safe. Steady, firm and reliable.

Every couple in a lasting and healthy relationship experiences the handing off of the reins at certain times, taking turns righting the ship and maneuvering the choppy waters of life. Today, I pass the torch.

We will use your measuring stick Kimberley. I will travel your narrows and discover what you will reveal to me, because I know you will keep us safe. You are our children's enveloping arms and I know you know what is best. You are steadfast, deliberate and thoughtful, and I thank you.

I'm going to catch my breath. Still a long ride ahead, and if I've learned anything in this life it's that just as you hit dry land, there's always a rough landing.

I love you.

    

He Is Perfectly And Wonderfully Made

It has been a while. Lots to cover, so lets get to it.

One of my many NY resolutions was to write more, and I've been waiting for a prompt; today, I got it in spades. 

7:12am - I'm holding Cash, waiting for the girls to gather their things before heading off to school, when he points to Kimberleys elliptical machine and says "Me want! Cash go!" I replied, "Sorry bubba but that is for adults." Again he demands to use it and I say, "Cash you have to stand and walk on it, maybe another time." 

Then he says what I have dreaded ever hearing him say. 

"Me legs sick. Doc doc fix."

A punch to my gut is an understatement, I literally wanted to take him to my bed, wrap my arms around him all day and cry. I know it, everyone else knows it, the kids at school certainly don't forget to mention it-but now, he knows it. 

This revelation probably came well before this exchange, but nevertheless, it was verbalized for the first time from son to father and it hurt. Cue sad music. Seriously though, it affected me more than I even thought it would, and it didn't help that the tone he uttered those few words sounded concerned. He knows. 

I have no misconceptions about the physical shortcomings my son has-but there is just something about the notion that his little head has thoughts about them. When most children will be concerned about how long recess is, he is struggling with comprehending why he doesn't get to walk. For a parent, it defines the reality that your baby is growing up, and that he has emotion and concern about something most of us take for granted. 

In the past Cash has said "Me walk", but his request was for you to carry him. Recently he says "Dadda carry Cash." I should've realized this understanding was becoming clear in his mind. At some point it was going to happen but I guess you can never really prepare for the shoe to drop-even though it is falling to the ground right in front of you.

Immediately after this exchange with Cash, Savy and Kim come walking up with all the necessary bags and coats for the day and whisk Cash away to the warming car, but Savy sees my face and as she is just about to step out the door looks back and asks, "Daddy are you crying?" "No I'm fine baby, have a great day!" I say as I hold back a welling tear. I didn't think anyone noticed. I took a couple deep breathes and went about my day, recounting this event every hour or so, wondering about the future. 

Then the questions start 

"Will he ever...?" 

"Are we doing enough?" 

"How much should we push him?" 

"What do I say to him?"

"I should talk to Kim."

"Are these therapists at school trying?"

"I need to ask Savy how she is doing."

"Why are there still Thanksgiving decorations up at the guest house?"

"Should I play this insane Powerball?"

"Will he always have to use a walking device?"

"This dog sheds wayyyy too much."

"It can always be worse."

"This sucks."

"What am I cooking for dinner?"

"Who is picking the kids up from school?"

The last question was answered via text from Kimberley- I am on deck. She thanked me in advance. 

"I should go grocery shopping."

"Will they ever get my bike fixed, and should I call them?"

"If I could burn that fucking wheelchair I would."

"If Cash went to TX State, how the hell would he get around that hilly campus? A&M is flat..STOP!"

Seriously this is how my brain works, and every one of these thoughts popped into my head today. I'm not sure if it is all that unique, but I swear I am never not answering a question I asked myself, so how many questions does Cash have?

1:45pm- I do the grocery thing, I have dinner and the college question answered in my head, and Duke is white. I chose the espresso wood floors, not him. 

2:58pm- I call in Cash' medicines. Nothing crazy, just the typical allergy stuff, but it gets me rethinking this morning. I feel myself getting all "negative nelly" and refuse to allow it, so I think happy thoughts, like Cash running through the quad in San Marcos to get a girls number. I'm golden. 

3:11-I hit the jackpot, going in through the outdoor, I land the one and only handicap space at Cash' school. Thats right, I am about to skip the entire line of cars and by doing so save me upwards of 15 minutes waiting to pick up Cash Money. Clouds part, the birds sing. Winning!

3:20- I see the first little rug rats exit the building, so I hop out and go wait at the front for my lil munchkin. 

3:23- I'm looking for Cash, his wheelchair, his teacher-anything familiar through the crowds and then-I see him! He is in a new gait trainer, one I have never seen before and his sweet teacher is guiding him as he walks through the front doors right to my feet. I just won the Powerball of my life and all the "Will he's?" I could ever ask have been answered. No, not a definitive yes he will walk, but hope. More importantly, that big smile and Caribbean blue eyes were beaming as he said "Me walk! Dadda! Cash walk outside!" His teacher (Mrs. Flink-who is friggin' awesome and deserves all the praise any teacher could ask for-and prayers) says that he has been in his gait trainer for 15 minutes and walked from his classroom to pickup really well. He moved his legs, pushed and got where he knew he had to be. 

It was a miracle. Not the walking, as he has been in a gait trainer many many times-though this may be the longest and seems to be the most productive time in it, but the timing of it. I needed this. He needed this. It was fitting that this little exchange and question we had this morning (and that I had allowed to negatively consume my day) was answered. I would not have normally picked Cash up, but God knew I needed to. He had Kim ask if I could get the kids so that I could witness this little boy be proud of himself and his accomplishment. I got to do it. God gave this moment to me, specifically. There is no other explanation.

3:27pm- I call Kimberley and tell her the good news-

Me:"Hey babe you are not going to believe who walked out of school to meet me in his gait trainer..." 

Cash:"ME!!!"

Kimberley:"HaHaHa! Awe thats so awesome Cash!"

^^^That is literally word for word how it went down. He was so excited to tell his mommy. Who could blame him. He was beaming, and so was I. 

I pick up Savy, tell her Cash' accomplishment and in her usual sweet voice she congratulates him with an added kiss on the cheek. 

9:15pm- Everyone is snoring but me. Typical. I turn on E;60, a series focused on the world of sports and the feel good stories about folks in that business. I DVR it. 

Tonight was a compilation, 3 stories of triumph. The first was about Ernie Johnson, the second about a dog that retrieves bats and the third about a little boy named Liam.

I'm going to review 2 of these stories. I fast forwarded through the golden-retriever vignette. Ernie was first, but I'll get back to him, let's meet Liam. Liam is a hockey fan, has downs-syndrome and beat Leukemia. Total tear jerker and the kid is amazing in so many ways. Certainly a tough little man, cute as a button and a smile that you can't help but want to see more of. He is basically a Bruins mascot and you may have seen him in a viral video about the "Fist-bump Kid". If not, here it is. Fist Bump Kid A beautiful story.

As great as Liam is however, the story that really got me was about Ernie Johnson. The son of a legendary sports announcer, he makes a name for himself-arguably even bigger than his pops. Meanwhile adopts 2 children, has 2 others, beats cancer, loses his dad and then finds out that his first adopted son who had multiple health issues as a small child has been diagnosed with a form of Muscular Dystrophy. The film follows Ernie through his daily routine with his son Michael, how he almost died, is now on a breathing machine and basically illustrates the hardship this family is dealing with while loving this 27 yr old son. Their strength, Michael's love for his dad and the happy nature with which they carry on their daily lives is inspiring. 

But what really got me way down in the feels was one line; one simple line that comes from a man who has experienced every type of loss and pain one could experience.

"He was perfectly and wonderfully made." 

Thank you Ernie, you just made this dads life more clear. 

You can find Ernie's story here.

God bless, everyone. 

Matthew