Tag Archives: family

On Hope

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“… abandoning hope is an affirmation, the beginning of the beginning.” – Pema Chodron, When Things Fall Apart

The first time I heard the parent of a special needs child talk about “giving up hope”, I was horrified. Luckily, I kept listening, so stick with me. The more I listened, the more I realized I was in the process of giving up hope as well.  I have given up hope slowly since we received Lyra’s genetic diagnosis, and more rapidly since we received her neurological diagnosis.  Giving up hope had been incredibly liberating.

When you’re pregnant you are full of hope.  You hope your child will be healthy, do well in school, enjoy books/sports/traveling etc. You hope your child will be successful and independent as an adult. You hope that they find friends, and at least get to experience what an average child experiences. The list of hopes and dreams goes on and on and is different for each person.

The weight of that hope is crushing and can be debilitating for some of us with special needs children. “Hope” can be a dirty word.

The longer I held onto the hope that Lyra would be an average kid, that she would “catch up”, the harder it was for me to enjoy who she was. The more I hoped she would do things physically appropriate for her age (like use her arms, roll over, sit up, or stand), the harder it was for me to see the accomplishments she did make.  The more I hope she says “mama”, the harder it is for me to notice the ways she does try to communicate.

I have had a harder time letting go of the “mama” thing.

I have given up hope that Lyra will cognitively ever by on par with her peers.  I have given up hope that Lyra will reach physical milestones along side others her age.  Giving up that hope has been incredible and liberating. Every time I give up hope that Lyra will be an average child, my eyes are opened to what she is. She is this bubbly little spit fire with her own opinion. She is fast to giggle and loves “peek-a-boo” in all of its various forms. She loves her Sandra Boynton books, like Are You a Cow, but only when she is in the mood to read. And she loves all things music, especially The Wiggles.

Giving up hope doesn’t mean that I give up on my child.  I will always fight for Lyra and do my best to get her what she needs.  I will always try to give her the tools she needs to achieve whatever she will achieve in life. However, giving up hope has allowed me to enjoy where we are today.  Have I fully given up on hope?  Nope.  I still yearn for her to look at me and say “mama”, and mean me. Maybe one day it will happen, and maybe one day that hope will also slip away. Both are okay.

Giving up hope allows you to stop playing the “what if” game, and start playing “what is”.  It doesn’t mean that you don’t strive for more, but you start from where you are instead of where you might have been.  It allows you to move on from the past and leave an alternative reality that only you live in.

I am giving up hope.  Instead I have what is. And that is more than enough.

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:

The Blessing of Family

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I am one of those people blessed with a supportive family. That is not to say that we don’t have our own conflicts, lord knows we do, but at the end of the day we support each other. For me, yesterday was one of those days that I needed a little extra support. Most days I deal just fine with Lyra’s diagnosis. I put my head down, take care of what she needs me to take care of, and I try to keep a sense of humor about things. Other days I find the uncertainty overwhelming and sad.

All parents have dreams for our children. We look forward to taking that picture on their very first day of school. You know, the one where the backpack is so big compared to their little bodies that we are worried our little one is going to tip over. We look forward to their first words, tottering steps, and their first birthday cake all over their cute face. I looked forward to her first swim meet and sharing a sport that I love so much with her.

Then I am reminded that she may never do any of those things.

She may go to “school” at some point, but it will be nothing like what the average child experiences. While she will likely speak (she is very vocal right now), she will likely struggle to make herself understood. Forming words and/or sentences is listed as a challenge with both of her genetic conditions. She will likely struggle to walk, let alone run. And birthday cake….. yesterday we met with the surgeon to talk about putting in a G-tube (information below). Unless sometime really changes with her eating, that cake will not be on her face. Everyone around her will eat it, but she probably will show little, to no, interest. Lastly, while she already shares my love of the water, swim meets and a swim team may not be in her future.

So, some days I get really sad. And this is where my family steps in. I can always talk to my husband and my family was always available over the phone, but there is something about being able to sit with my mom on the back patio while she plays with Lyra. There is something about sharing a drink a with my brother-in-law. And it is so different to be able to sit on the couch with my sister with Lyra sleeping on my shoulder. The physical presence of family makes all the difference for myself, my husband, and most importantly, Lyra.

Some time in the next two weeks Lyra will be having surgery to have the G-tube placed (we do not know the date yet), and this will be a very different hospital experience than the last three. This time there will be no emergency room, no ambulance ride, and no frantic phone calls to get our lives reorganized. This time it will be planned, and she likely will not be in the hospital for more than a day. This time we won’t have to worry about who is going take the dog. This time I will actually have a bag packed for myself. And this time we will all be surrounded by family.

We are truly blessed to be here.

G-Tube information: http://www.chop.edu/treatments/gastrostomy-tubes#.VeePadNViko