Fatigue

The Senate is currently considering yet another ACA-repeal healthcare bill, a bill that would significantly harm millions of Americans. Every major medical association opposes this bill, including the American Medical Association because it violates their oath to “First Do No Harm”. The Medicaid directors from all 50 states have spoken against it. And yet, despite overwhelming opposition, the bill’s passage or failure in the Senate teeters on the edge, and will likely come down to the yes or no vote of a single Republican senator.  

Yes or No. 

I’m so tired of knowing my child’s future and well-being depends on one of these two words, uttered by men and women who for the most part are simply playing a political game.

I’m weary of oscillating between terror and relief, with only a few weeks respite between the two.

I’m exhausted with constantly seeing the words Breaking News and knowing there’s a fairly good chance what follows those words will significantly impact my child.

I’m wasted from the sense of dread I feel when I go through a stack of mail and see my son’s name on an official looking envelop, or receive a call from an unfamiliar number.

I’m worn down from having to describe my son as a series of symptoms, disabilities and diagnosises to strangers whose clicks and keystrokes put him in either an “Approved” or “Denied” category.

I’m drained from not only worrying about my own child’s future, but also the futures of the children of close friends, and so many others who bravely share their stories online.

I’m fatigued from begging my friends and acquaintances to call their representatives, knowing the majority of them won’t, but having faith that those who do will make even a small difference.

I’m numb from realizing over and over again that so many people who proudly proclaim themselves pro-life (both politicians and regular citizens) also don’t consider basic healthcare a fundamental human right.

My spirit is tired, and my body and brain are exhausted. And yet, the stakes are too high for too many human lives to quit now.

Nevertheless, she persisted.

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Letters to Grayson: 7 Years

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Dear Grayson,

Happy Birthday! I hope you realized today was your special day and felt extra loved today. Your siblings sang to you and hugged you this morning, and we sent. you to school with cookies for your teachers and classmates to celebrate. Food and treats are so central to birthdays, and it makes me so sad that you aren’t able to eat them. You were in a great mood when you got home from school, and everyone was delighted to see that your teacher had decorated your wheelchair with balloons and streamers, and you were wearing a Happy Birthday ribbon on your shirt.

IMG_3468Each of your birthdays is a reminder of how very lucky we are to have you here. Your life is so precious and fragile, but you are also so tough. The world is most definitely a better, gentler place because you are in it.

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You’ve had a busy year, sweet boy. Since your last birthday, you:

  • Completed kindergarten, which you totally rocked. You started first grade a few weeks ago at another new school and so far, it’s been a really easy/great transition.
  • Lost 4 teeth and have 3 permanent teeth and an adorable hole in your mouth
  • Had fundoplication surgery and switched back to a G-tube from years on a GJ tube. You still retch a lot, but no more vomiting! Yay!
  • Became an advocate for protecting the rights of people with disabilities to have healthcare in this country. Literally millions of people have heard your story.
  • Started consistent therapy at home 4x/week. You amaze me at your stamina- you go to school all day and immediately do therapy when you get home. You work so hard and are making great progress!

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Grayson Robert, being your mom is the greatest joy of my life. You have changed me in both subtle and dramatic ways, and I thank you for that. Happy Birthday sweet G- 7 is going to be the best year yet!

Love,

Mommy

Yes, this is really, really hard sometimes

Here’s a little story from my afternoon…

We were at our neighborhood playground with our neighbor friends. Since Grayson’s speech therapy was cancelled for today, I had driven home for a few minutes to get him off the school bus, then brought him back to the playground to let the kids play longer. I had only been back with G about 10 minutes when it started to rain a little. Most everyone who was at the playground then decided to leave, and our kids decided they wanted to go too. Charlotte was riding home with my neighbor, and I was trying to get the boys to our van, while pushing the wheelchair and lugging the ride-on toy that Nolan had brought.

Nolan (who is a runner) broke free from my hand and ran towards my neighbor’s van. I knew she was right there, so I kept pushing G the other direction on the sidewalk, towards our van, thinking I’d just grab him when I got G parked at our van. Then all of a sudden, I saw Nolan running away from her van, towards the middle of the parking lot where another person was pulling out in their SUV. I don’t think the woman driving saw him, and I panicked. I started screaming and ran for him. I think she saw or heard me screaming because she stopped, just feet from Nolan. I scooped Nolan up and then turned and started to panic even more.

When I had run towards Nolan, I let go of G’s wheelchair and didn’t put on the brake. Now, I see G’s wheelchair rolling towards the curb and a parked landscaping van, and I was too far away to catch it. I sprinted as fast as I could, but I couldn’t stop him in time. G’s wheelchair hit the side of the van, rolled off the curb, then fell over on it’s side, and all I saw was G’s head hit the pavement.

As fast as I could, I ran over to him, and all I remember was screaming “No, No!” the whole time as I picked up his chair. G was doing that silent cry/scream that kids do when they are really upset or hurt, and I was so scared. His eyes were closed for a really long time. I didn’t know what to do; he was so securely strapped in his chair and I didn’t know if he was seriously hurt or not. Finally, he started audibly crying and opened his eyes. He wasn’t bleeding and I didn’t see any knots on his head. His face was pretty red, though.

I really didn’t know what to do, but I had to do something. I decided it was best that I take him home to check him out- I’m so glad we were just blocks from the house. The men who were in the van that his chair hit were so kind. They helped me strap his chair in our van and were genuinely concerned about G. The woman driving the SUV that Nolan ran in front of got out and was helping too. I hope I thanked them enough.

For such a dramatic few seconds, thankfully the aftermath was less dramatic. We got home, and G seems fine. He has some scratches on his face, but I think the chair took the brunt of the impact of the fall. I will say, I’m really impressed with his chair- it really protected him! He doesn’t have any other injuries, but I’ve been so worried about him. I’m really thankful his night nurse will be able to watch him all night tonight.

The whole incident was so scary and I am still so shaken up. It could have easily been so much more tragic: Nolan could have gotten hit by that car and G could have been seriously injured by his fall.

I so often brush off the fact that just managing these three little people is so, so hard. Just keeping them safe is difficult. So many times I tell myself to just suck it up, that lots of people have this many, or more, kids and yeah, it’s hard, but I just need to do it. But tonight, I’m going to acknowledge, and sit with the fact that having a kid with profound special needs, a 4 year old and a 2 year old, is really, really f’ing hard sometimes. Sometimes, there’s absolutely chaos. And I am going to, and do, mess up sometimes. And sometimes things just happen.

There are minutes, and usually hours, of every single day that I feel like I’m drowning. I try to laugh it off, as so many of us do, calling myself a hot mess and trying to just roll my eyes at my imperfections. But the truth is, parenting in this stage can be really lonely, defeating, and scary. When an innocent trip to the playground almost turns into tragedy in an instant, it’s soul-crushing.

I’m not going to give in to mom-guilt, because I followed my instincts. There was nothing I could have done differently. If I had taken the time to put the brake on the wheelchair, Nolan may have gotten hit by the car. And I don’t want to be a hovering mom either; I was a really scared kid, and I don’t want to raise scared kids or be a scared mom. I really believe that what happened today was just a freak series of events, and praise God the outcome was good.

But yeah, parenting little people is hard, and messy. Now please, pour me some wine.

5 Years

Five years ago today was possibly the worst day of my life. I was blindsided with the news that my not-quite two year old finally had a diagnosis, and it was terminal. For weeks (months? years?) after that day, all I could I focus on was Grayson is going to die. To me, the label of Leigh Syndrome meant death. Period.

I wish I could go back and time and shake myself, and show myself pictures of that “terminal” little boy today.

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The little boy who would not only outlive the time that Google told me he had, but who would exceed so many expectations, including mine.

That terminal little boy rides the bus every day to and from First Grade.

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The little boy who works hard in his 4x/week therapy sessions.

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He giggles, whines, and has preferences, just like any almost 7 year old. And yes, he still loves Veggie Tales (sorry about that one, former self).

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Grayson brings more LIFE to our world than almost anyone I know, and nothing about his life resembles death, or dying.

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I took this picture just hours after his diagnosis. Look at his face. Grayson knew before any of us that his disease wasn’t going to define or limit his life.

5 years. I’m so lucky.

Letters to Nolan: 2 Years Old

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Dear Nolan,

Happy Birthday to our baby, the caboose of our family. You are two. TWO! Honestly, I have no wistfulness about your babyhood slipping away or you being the last one; I’m excited for big kid stuff!

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You are a busy guy these days, with lots of budding interests. You love anything with wheels, and call 75% of vehicles “firetrucks”. For your birthday, you got all sorts of cars, trucks and construction equipment. You are in little boy Heaven.

You are talking like crazy now, and are starting to put sentences together. “I don’t like it” and “What happened?” are two of the most frequent we hear. You are still so, so loud, and get louder and louder until you get a response. The two year old tantrums have started too, and they are intense, but thankfully usually can be diffused quickly.

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Nolan, at 2 years old you:

  • Weigh 28 pounds 5 ounces
  • Wear size 24 month and 2T clothing, size 5 diapers and size 6 shoes
  • Have 10 teeth
  • Still go to sleep with a bottle. Shame on Mommy.
  • Start school this week! You’ll be going three days a week from 8:45-2:30. I know you are going to love school and do great
  • Survived your first hurricane less than two weeks ago. What a crazy week it was.
  • Are so funny about your clothes. You know that some of your clothes were your cousin Theo’s and you refuse to wear anything that wasn’t his. You ask me every time I get you dressed: Theo’s? Yes, baby, this was Theo’s.
  • Love to watch Fireman Sam, Little Baby Bum, and Daniel Tiger
  • Always want to be with your siblings. You ask about them when they aren’t around. IMG_3243

Nolan, I’m so excited to watch you grow this year. You are so cute, fun and funny, and I love you so, so much. Happy Birthday Noly Poly!

Love,

Mommy

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