Sometimes, I just don’t want to fight for a little while

Sometimes, I just don’t want to fight for a little while

Parents of special needs children experience battle fatigue. It’s something we don’t often talk about, not even to each other, but it’s there. It get mentioned on the walls of support groups in passing, but often we feel like we need to “buck up” and keep moving.  And we do. But there are times when we just want a break from fighting certain battles.  We just want a short respite so that we can enjoy everything else about our child without the dark cloud hanging over our head. We are always fighting behaviour challenges, medical challenges (often the two are linked), insurance companies, state/federal support systems, schools, doctors, hospitals, other professionals.. the list goes on and on.  Sometimes, we just want a break from it all, not to get away from our child, but to enjoy other things about them.

Right now it is 2:24 AM.  I have been up since 12 AM with Lyra and she is currently sitting in her crib clapping for herself and giggling.  Cute, right?  Not so much. We played this game last night and a different version the night before. In chunks here and there I am getting enough sleep, but I am exhausted. While Lyra has never been a great sleeper, the last 4+ months have been hell and it impacts every aspect of our lives.

I fight Lyra every day, more than once a day, to go to and stay asleep. It isn’t just a nighttime problem. It’s a nap problem too. She can have dark circles and glazed eyes, and it doesn’t matter. She won’t sleep. I have read every articles I can find, I have reached out to every single one of her doctors.  I HAVE A FLIPPING SPREADSHEET so that I can do statistical analysis on what works and what doesn’t…. The spreadsheet has proven basically worthless.

Lyra

Doesn’t

Sleep

….and no one seems to be able/willing to help us….

I have brought up the topic over and over again with almost all of Lyra’s doctors.  They smile, shrug, and typically say nothing.  To be honest, I don’t think any of them believe me when I say it is really this bad. If they do say something it’s:

  • “It’s a phase, she’ll grow out of it.”
  • “Every parent goes through this.”
  • “You just need to do more sleep training.”

What I hear is:

  • “It’s not my problem.”

It doesn’t matter that I point out she has always had sleep issues and they are progressively getting worse. It doesn’t matter that I explain there are some limitations to what sleep training method we use (vomit on the walls is NOT a new interior decorating trend). They clearly don’t believe me when I explain how diligent we are with her bedtime routine. We even read the same stinking book! I can see it in their faces that they believe this is somehow our fault and there is nothing they can do to help.

What they fail to appreciate is how this impacts our family as a whole. I am not just talking my immediate household either. It has changed how we do family dinners with the other 3 households we live near. It has impacted how I plan (or don’t plan) outings during the day with family members or friends.

I am so worn out from fighting with this issue.  It takes away so much from our quality of life and it distracts me from all of the wonderful things about my daughter. I just want a break, not from her, but from the fight. I want to forget the sleep issue for 24 hours and just enjoy everything else about her. I have battle fatigue.

But there is no one else who can fight the fight for us.

*** This post was completed at 3:07 AM and she has moved on from clapping to blowing bubbles.  Lyra finally fell asleep at about 3:45 AM. ***

Some articles:

First Morning Away

First Morning Away

The thing I keep having to remind myself while Lyra is in the hospital is that I can’t take care of her if I don’t take care of myself. So, this morning I am going to my 6 week follow-up after giving birth. It means that I will miss rounds for the first time in the 21 days she has been in Children’s Hospital. My husband is there, but it is incredibly tough for me to not be in the room talking to the doctors. However, I know that it is very important to be checked out by the doctor post labor. I may not always be the best at taking care of myself. I can’t bring myself to stay home and go back to Muay Thai. I don’t have time to go to the gym and make rounds in the morning, and it is normally closed when I get home at night. Once I am in the hospital, I have found it impossible to leave her to go for a run/walk in the are. Plus, it is beyond hot and humid right now. So, the least I can do is go see my doctor.

So, my morning has been surreal.  I am watching last nights episode of So You Think You Can Dance, drinking coffee, and eating breakfast. I feel kind of like I did before I had Lyra, but with this anxiety bubbling just under the surface. Honestly, I am trying to just maintain my cool and not say “screw it” and head out to the hospital. I just keep reminding myself that this is what is best for my baby. Hopefully my husband calls soon with additional information from the doctors.

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Blowing my husband a kiss after feeding the baby