Special Needs

A Letter to My Child’s Therapists

A Letter to My Child’s Therapists

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You walked into his hospital room with your bags (the ones we would know so well), pulled out your big notebook, and started a file with his name at the top. We had been in the hospital for a week at that point, and it was our fourth hospital trip in two months. I was running off of machine coffee and no sleep. The most exciting time of our day was when the helicopter landed on the pad outside of Micah’s room. So when you walked in with your bags and notebook, hope followed you through the door.

Micah Turns Two!

Micah Turns Two!

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I can’t believe it.

All of the hospital stays. All of the therapy. All of the syringes and feeding tubes and connecting tubes and ferrel bags. All of the doctor’s appointments. All of the nights I never thought we’d sleep again. All of the IV sticks and finger pricks and glucometers and beeping pumps. All of the labels.

He has overcome.

He’s a little fighter, this kid. And he keeps surprising us. Surprising his doctors. Surprising his therapists. He’s come so far. And we can’t be more proud of him.

Micah’s Diagnosis. A Year Later.

Micah’s Diagnosis. A Year Later.

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We waited three and a half hours to see the Neuro Surgeon that day.

We sat in those hard chairs with a fussy ten month old and took turns walking him around the waiting room. We watched our favorite Peds Surgery nurse take back patients one by one, all the while, waiting on the Neuro nurse to call Micah’s name. We kept looking at our watches, because we had a benefit to attend that night and perfectly scheduled grandparents to keep Selah for that appointment and then the benefit. The minutes turned into hours and we knew we weren’t making it.

Finally. They called our name.

Micah had been having trouble stabilizing his blood sugar so our pediatrician wanted to take a peek at this pituitary gland on a MRI, just to rule it out. We totally weren’t concerned at all about this MRI. But he called me a few days later and asked me if I was sitting down and if Brandon was home. I remember telling him Brandon was upstairs getting ready to go into work (he works night shift), and I told him I couldn’t sit down I was cooking supper. (Mom’s don’t sit down at 5 pm.)

“Love Him Anyway” Blog Tour

“Love Him Anyway” Blog Tour

I met Abby a few years ago at a writing conference. Her sister and my husband worked together, found out we were going to the same conference, and arranged for us to meet. I didn’t know much of Abby’s story, but when we met, was so intrigued by her strength. After hearing her story, I knew it had be told one day. I left the conference so happy to have made a new friend.

Last year this time, I frantically messaged Abby while I was sitting in Micah’s hospital room. I remember hearing the beeping of Micah’s feeding pump as I was typing, and the exhaustion of my body, but mostly the weariness of my heart. I was asking her if she knew about any financial assistance for families of children with special needs. With our third stay in the hospital that month, I knew I was going to have to quit my job to stay at home with Micah. Although I was asking her for resources, she saw past my questions to my desperation.

Learning to Rest

Learning to Rest

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The majority of my childhood was spent striving.

I tried really hard to be the best at everything. If I made good grades, there was a chance I would get approval. If I led this or was the best at that, there was a chance I would be recognized. If I worked hard to be perfect, that would be the ticket to love. If I was “good” then that would help keep my family together. The more I worked, the less I was seen. But it didn’t stop me from trying.

I thought that was how it worked with God too. If I read my Bible every day, memorized Scripture, stayed pure, went to church every time the doors were open, and told others about Jesus, then I would have all of His love and He wouldn’t be disappointed with me. I could tell you that “my righteousness was like filthy rags,” but I didn’t really believe it. Trust me, I knew I was missing the mark, but the part about God’s love being so big for me, I just didn’t get it.

Fast forward a lot of years.

We Never Give Up

We Never Give Up

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Thanksgiving didn’t quite go as we had planned.

The fridge conveniently stopped working the night before Thanksgiving. We all but laid hands on the stupid thing to get it to work again, considering it held within it’s drawers most every dish we would ravish the next day. I know it sounds silly, but when I had to quit my job to stay home with our children because of Micah’s special needs, a thing like the fridge breaking is a big deal. And if I let it, could have easily send me down a thought path of fear and panic.

I whispered to the Lord about that stupid thing. Reminding Him I don’t really have a paying job right now, and how if the thing stopped working we would loose lots of food that also costs money. (Like He wasn’t aware. Or didn’t notice or something.) I think just the posture of me turning to Him was declaring my desperation of Him, regarding the fridge, even if it was a fridge. Anyways, Thanksgiving Eve started off a little wacky. We ended up going to pick out our Christmas tree which was the absolute best. Our hearts were full when we came home, and we checked on the fridge (that still wasn’t running) and went to bed.