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:

Dealing with the Trauma

Dealing with the Trauma

Trauma is not a word that I like to use, but in this situation I can’t think of a more appropriate one to use. Also, I am not always sure how well I “deal” with it, but I do live with it. The fact of the matter is that my husband and I are traumatized by everything that has gone on. I don’t think a day goes by where I don’t think, at least once, “Am I going to have to take her back to the hospital?” Sometimes this thought occurs because the future is so unknown. Sometimes I have it because we are having a bad day. But, the thought is always there.

There are defiantly some triggers for both my husband and I. The two that come to mind are a poor PO (from a bottle) feeding, and throwing up. When Lyra is only willing to take a small amount from the bottle it flashes me back to desperately trying to get her to take just a little more, and knowing that it wouldn’t be enough to sustain her. Now, I know that she has the NG tube now and she WILL get the nutrition/calories that she needs. That doesn’t stop me from remembering being in tears and begging my baby to “just take a little more” because I knew her tiny body was in desperate need of calories and hydration. It doesn’t stop me from remembering how helpless I felt when I would bring the much needed bottle to her mount, only to have her scream and refuse to suck from it. Most of all, it doesn’t stop me from remembering how defeated I felt when she threw up what little we had managed to get in her.

Throwing up is the other major trigger.

Now, she does still throw up. I get that all babies throw up from time to time, but when you have a failure to thrive baby with a history of feeding issues, it can induce an anxiety attack every time it happens. When she throws up now, all that I can think is:

“What did I do wrong?”          “Did I move her too much/too quickly?”          “Did I push her to take too much from the bottle?”          “Did I start the NG feed too quickly after the PO feeding?”          “Is the NG feed too fast?”          “Did she get enough?”         “Will she keep her next feeding down?”

“Will I have to take her back to the hospital”

On and on and on…….

Now, I know that not all of these thoughts are productive. Sometimes, I did nothing wrong at all. But that doesn’t stop me from thinking some (if not all) of theses when it does happen.

The other thing I struggle with is hearing her cry, especially in fear and/or pain. I know her cries for fear and pain very well at this point, and sometimes I hear them when they aren’t actually happening. Knowing that she isn’t actually crying is a big reason why I don’t like to be in a different room than she is, especially when it comes time to sleep. Even if I am taking a nap and my husband is home, holding her, I swear I will hear her cry and it will send me vaulting out of bed. Tonight was a great example of what I struggle with.

Lyra was fussy most of yesterday (plus she threw/spit up three times). For the midnight feed she did not want to calm down and was very upset through much of the NG feeding. Sometimes, if she is too upset during the NG feed, she throws up. So, my husband and I spent the 25 minutes trading off trying to calm her down without picking her up or accidentally having her gag on her pacifier. Finally, we got her to fall sound asleep at the very end. Rather than risk waking her up in the transfer to her bed in our room, we decided to leave here in the nursery with the video monitor on. Laying in bed, I could swear I heard her crying. I could hear it building into real distress. Opening my eyes, I looked at the monitor only to see her still her peacefully sleeping always. However, even with my eyes open and watching her, I swore I could still hear it. Moments like this make me feel crazy and are hard to acknowledge and talk about, but they happen. I know why the fear is there and the moments that caused me to develop such anxiety about those two types of crying, but knowing and controlling are two very differently things.

For now, we are dealing with our trauma the best that we can. For me, I have to keep reviewing the signs that tell me that she is okay. I also try to find tools, like the monitor, to help show me that she is okay. When I start to panic, or fall apart, about some of this, my husband tells me what I can’t tell myself. I do the same for him when he starts to lose it a little. Right now, we are still a team.  We try to recognize when one of us needs a break to regroup, or words about what is different (and so much better) about having her home this time. At this point, we have had her home for the longest period of time yet. As the days go by, I hope the anxiety will decrease. But for now, the best I can do is admit it is there and deal with it by using the few (but powerful) tools that I have.

IMG_0311

Lyra’s first 4th of July.

Pink, white and blue was the closest I could get with the cloths that fit her.