Monthly Archives: November 2016

Fitting In

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For those of you who know me well, it will come as little surprise to you that I have always struggled a little bit to fit. I have few close friends and am totally okay with being on my own.  However, becoming a mom has changed things a bit, and becoming a special needs mom has really changed things. I figured that, once I became a mom, I would meet all these other moms and we would do mom things. I would find my tribe and we would do lunch, coffee and playdates.  I would find my group of moms that I fit in with and we would all have the common ground of being a mom.

Well, as we all know, things didn’t go quite to plan.  I didn’t make it to the new mommy meetings organized by the woman who did my birthing class. I didn’t go to a mommy and me swimming class. In fact, I didn’t go out much at all with her for the first nine months to a year.  I also pulled away from some of the friendships I had pre birth.  It was painful to talk about what was going on, I was ashamed* the I couldn’t keep her out of the hospital (please read my footnote before reacting to that statement), and it was stressful trying to learn how to care for a medically complex child.  To make this more complicated, we up and moved across the country when she was only three months old.

Slowly I did reach out to groups of people via facebook.  Initially it was groups of people with feeding tubes.  At the beginning those groups were both helpful and frustrating.  People have tubes for an exhausting list of reasons. I wanted to talk to moms that had been through exactly what I was going through. Even though no other person has Lyra’s exact diagnosis, I at least wanted to talk to parents of children with one or the other. I wanted to find a place where I felt like we fit in. I did reach out to a few groups and was turned away because Lyra had two genetic conditions, not just the one the group focused on.

In the end I ended up turning back to my feeding tube groups and told them what happened. The response I got started a slow process of changing how I viewed this whole fitting in thing.  I had moms invite me into groups focused on other genetic conditions because it was “about support and inclusion, not exclusion and feeling more isolated than we already do.”  I also started to notice how other parents reacted to Lyra.  Of course, I got the people who were totally freaked out by her and acted as if her condition was contagious. But I also noticed how many people who just met us where we were that month/week/day.

While it has literally taken months for me to get it, I have realized that it isn’t about fitting into this group or that group.  The people who matter will make space for you.  They don’t judge you (or your child) for not being at the same place their kid is. They don’t care that your child has “attachments”. They make space for you in their lives without expectations, judgements, or pity (I hate pity).  They celebrate every milestone with you, no matter when it happens. And in the end, you realize you actually have more common ground than you thought (teething is the great equalizer).

So once again, I am okay with not fitting in.  I never really have fit into one group or another.  I shouldn’t expect to now. But I have learned to keep an open mind and watch for the people willing to make space, and to ignore those who want me to fit into one predefined.

Trying to get a picture of my “monsters” at Halloween

  • On being ashamed: Let me be clear, I have never been ashamed of my daughter. For a time, I felt like a failure as a mom that I couldn’t keep her out of the hospital.  I felt like I wasn’t qualified for the job.  What I quickly learned was that knowing when Lyra needed more serious medical intervention was one of my strengths, not a weakness.
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Sometimes, I just don’t want to fight for a little while

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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:

To my friend

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Pediatric Nurses week was a month ago…. I think…. maybe more.  I have had this post on the back burner for awhile, but life happened. While more than one friend of mine is a nurse who works with little ones, I want to talk about one in particular. I have known her for about four years and I knew she was a nurse.  I knew she worked with kids.  But I really had NO idea what she did.  In my head I pictured the nurse at the pediatrician’s office.  No no. That is not what Jen does.

Jen and her sister were two of the first people to figure out that I was pregnant.  They noticed how green I was at her sister’s baby shower and how far I sat from the food. While I didn’t know it at the time, Jen was always checking on me during my pregnancy.  Just checking in.  She was one of the first people I talked to when we started to get hints that something that might not be normal with Lyra.

She just listened, and provided words of support.  But she didn’t talk about what she did or where she worked.

After Lyra was born, I planned on Jen being one of the first people to visit. But things didn’t go well and we were very quiet about our little girl.  She was struggling and I was scared.

Finally, after almost losing Lyra when she was 10 days old, I sent an email to a select group of friends to let them know Lyra was in the NICU at Children’s National and we didn’t know what was wrong. All we knew is that she wouldn’t eat. It was 3 AM. Almost immediately after sending that message I got a text from Jen.

“I get off work at 7am. I will meet you outside of the NICU. I work on the same floor.”

Jen was a nurse, at Children’s National.  She was one of the few people who really got how scared I was and how sick Lyra was. She also knew that Lyra was in the best possible place she could be.  During our next hospitalization at Children’s National (when this blog started), Jen would check in on Lyra on the pediatric floor. She works nights and knew that I didn’t always stay there. When she had the time, she would pop in and just see how my baby was.

Jen works with GI kiddos and over the past 16 months has been an amazing sounding board and source of information.  She is also able to tell me things that I might not take as well from doctors, simply because she is my friend. She doesn’t sugar coat the reality of raising a child with complex GI/medical issues, but she also points out all the positive things that I haven’t always understood were tremendous milestones for children like Lyra.

“Kids like this fight for every oz they gain.” – Every time Lyra gains weight I think “Jen would be so proud.”

“Sometimes we discharge kids and they are back 24 hours later.  It’s just not always clear what the answer is and why something stops working.” – I thought she was crazy.  Totally nuts.  How could a kid be good enough to go home and be readmitted 24 hours later? …. Then March happened and we did just that.  At least Jen prepared me!

There are many others, but you get the idea.

In the end, Jen is my friend. She is my friend who quietly does amazing things and never brags. I know what Jen does because many Jens have taken care of Lyra (and me).  Remember, she works on the GI floor, so she deals with a lot of “ew” every day. She has been a source of comfort, honesty, support, and humor.  Even if she will never say anything herself, she deserves some bragging.  So, I will do it for her.