December 4, 2017

Dear Mom of the Kid Who Has Complex Medical Needs

mom of medically complex child kid complex medical needs

I took this picture after a long doctor appointment for my four-month-old son last week. The office was running behind, I had my four-year-old with me, I had to call my two-year-old’s teacher to tell her I’d be late and the appointment ended with a missed blood stick for my sweet baby. I felt so drained. Any color I had in my face to start the day, was gone. Every ounce of my body, my mind, my heart was spent.

Dear mom of the kid who has complex medical needs, I see you. The first three months of our son’s life were run by multiple appointments a week—many of them frightening, all of them stressful. I don’t know how we got through. 

To be honest, I think this chapter could be closing for us. I think we may get down to one appointment a month or less with our three specialists. I’m so sorry if this statement pains you in some way. I don’t know why our child got this break and yours didn’t. I wish I could take it away from you, away from them.

I know the first three months of our son’s life may be your normal. I know this one appointment I had last week, may be your light day. With the short glimpse I’ve had into this world, I just want you to know that someone out there sees you.

I see you pacing the halls of the children’s hospital with worry in your step, but determination in your heart. I see you on the phone with the insurance company fighting a battle that you’re so tired of, but you keep pressing on. I see you with your child’s heavy equipment, your back is tired, but your strength is next to none. I see you with bags under your eyes, but with fierceness inside of them.

I don’t pity you, I see you. You may break down, but then you get back up, ready to take on the next hurtle. Your strength is fueled by immense love. You are a warrior. I see you.

 

Medical update:

If you are new here, our son Preston was born with a lower urinary tract obstruction and clubbed feet. Preston had appointments with urology and nephrology last week. Both appointments went well. His urologist wants to take him off his daily antibiotic to prevent UTI’s, he doesn’t see the need for it any more. His bad kidney isn’t negatively impacting him. His good kidney is a little enlarged, but that is to be expected. His potassium levels are still on the high side, but within normal range. I think we may be down to seeing the nephrology once a month and urology once every couple of months. We are so thankful. We haven’t met with orthopedic surgery yet this month, but we are hoping he only needs to wear his boots and bar at night starting this month.

complex medical needs

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