Category 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:

It’s about more than my child

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Unfortunately I am writing another post in anger, but my heart hurts for this family and this child. A mom in one of my support groups told us how she went to pick her child up from school and was told, quite proudly, that the child’s teachers/aids had been able to get the child to eat. To do so they PINNED THE CHILD DOWN, held their chin and forced food in their mouth. The teacher/aid admitted the child cried, but was just happy they swallowed the food…

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The mom informed us that when she went to speak to the teachers/aids they seemed disinterested in the fact that what they had done was ABUSE. In their minds, so long as the child ate, nothing else mattered. They don’t see anything wrong with what they did. These people have to learn they were wrong for one important reason: While they will never do it to this child again, they WILL do it to another child. 

While I am sure this story is far from over it brings me back to a big reason why I write this blog: education.
This blog started as a way for me to update people on Lyra and to vent my own emotions. However, it has become more than that. It has become a way for me to educate people about special needs families. Growing up I was exposed to many children with special needs, but I was still totally clueless until I had Lyra. I had no idea how hurtful people could be. I had no idea how parents truly felt about their special needs children (they are pretty fantastic kiddos). Now that I know, I try to share that with the world. My hope is that it will change how people approach and view special needs families. 

So far 95% of my interactions with people have been positive, and the rude or hurtful things that have been said to me about Lyra haven’t been that bad. The things that have been said were said out of ignorance. My hope is, by writing about Lyra and our lives, that it will change what someone says/does when interacting with our community. While I can’t fix stupid, I can try to educate the ignorant. I do this because it’s not just about Lyra, it’s about the tubie family you run into at the grocery store or in the park.

It’s about more than my child.

When there is no “getting better”

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When there is no “getting better”, your definition of “better” changes.

Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.

Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”

However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:

“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”

Now, does this mean that you shouldn’t ask me if Lyra is “better”?  Absolutely not!  Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.

And really, there is no cure for cute.

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The Things People Say

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This week is Feeding Tube Awareness Week. In honor of that, I have been trying to educate those around me.  I asked a number a group of caregivers (parents/grandparents/foster parents) to share some of their stories with me. Today’s topic is about the things people say to us and to our children. Even when people mean well, their words can be incredibly hurtful. These things have been said to us by strangers, family members, friends, and medical professionals:

  • “Have you tried letting them get hungry?” or “If you just stopped using the tube I am sure they would get hungry enough to eat.”
    • Many parents posted versions of these two comments. Some of us (myself included on this one) watched our children almost die because medical professionals didn’t believe us that our child wouldn’t eat. They don’t necessarily get hungry,or when they do, our children don’t eat enough to survive. If it was that simple, they wouldn’t have a tube.
  • “Did you try breastfeeding?”, “So you don’t breastfeed?”, or “If you just breastfed your child wouldn’t have ended up needing a tube.”
    • Breastfeeding is a VERY sensitive topic for this crowd. I think I can safely say that almost all of the moms who were able to tried to breastfeed. If we couldn’t do that, we at least tried to pump to give our children breast milk. Some of the moms spend months pumping. Some, like me, had no choice but to switch to formula. We all feel like the whole “breast is best” thing has been shoved down our throats, and we feel incredibly sad and guilty that we did not to experience that with our children.
  • “Have you tried giving them _____?”, “I had a picky eater. I gave them _____ and they started eating.”, “I bet I can get your child to eat.”, “If you just gave them kid food, they would eat.”
    • Don’t you think if it were as easy as giving them a different type of food we wouldn’t have ended up with a tube?
  • “So when are you taking out the tube?” or “Can you please remove the tube for family pictures?”
    • For most of us, we have no idea.  The answer may be never. That is okay. Our child is here. Isn’t that enough?
  • “This is disgusting. You shouldn’t be doing that in public.”, “Can you please feed your child at home, before you come over?”
    • I was amazed at how many parents said they had heard this when feeding their child in public. Breastfeeding moms, you are not alone.
  • “What is wrong with your child?”
    • This is one where I know people mean well and are curious, but there is a better way to say this. One mom explained perfectly why this is so hurtful.  Her daughter is a little older and when people say this her daughter hears, “something about me is bad/wrong.” These kids already know they are different and many struggle with confidence. Instead, you can ask the parent or child what the tube is. You can ask why they have a tube (many people are more than happy to educate about their child). Bonus points if you throw in a comment to the child -if they are older- like, “I bet that tube helps make you big and strong!” Make it a positive thing, not a negative one.
  • “The tube is just such an inconvenience.”
    • This “inconvenience” saved our children.
  • “I wish my kid had a tube. It would make dinner time/giving medications/etc. so much easier.”
    • There is nothing easy about having a tube and none of us have a happy story about ending up with one. Also, there are many other things that come with tubes: reflux, vomiting, chronic constipation or diarrhea, etc. While tubes have saved our children, we do not wish this upon anyone. Although, a little piece of me does recognize that it is nice that my 9 month old does not spit her many medications back at me.
  • “I will pray that he/she gets better.”
    • This is one I personally do not have any experience with, but a number of parents posted it, so I am sharing. From what I understand, their problem with this comment is that, in the parent’s eyes, the child is just fine how they are. They are happy and loving kids who are just different. Some of them won’t “get better” because they have a genetic disorder. There is no cure for genetics.
  • “Your child looks so healthy. Are you sure they need a tube?”
    • The tube is why they look healthy.
  • “I think the tube is just a crutch.”, “If you just took the time to feed your child, they wouldn’t need a tube.”
    • Yes, we are such lazy parents. That is why we never sleep more than a few hours at a time(feeding also happens all night for many of us), we are always running to doctor and therapy appointments, we spend days in hospitals/ERs with our children, and hours researching/asking other parents for solutions to challenges we are having. Yep, that’s it. We are too lazy to take care of our kid…
  • “If she eats by mouth, why do they need a tube?”
    • Some kids, like Lyra, simply don’t eat enough. They are working on it, but until then, they need a tube. Also, some kids have medical conditions where they need medications that only work correctly when delivered directly into stomach or intestines.
  • Saying nothing at all and just staring.
    • Our child is not a sideshow. Either ask us a question or stop staring.

Okay.  Enough with the negative stuff.  This isn’t everything, but you get the idea. Here are some positive things to say, especially if you are curious:

  • “Can I help you? Do you need an extra set of hands?”
    • Especially when something is going wrong during a public feeding, this is SUCH a blessing. You have no idea how much it would help to have an extra set of hands when setting up a feed in public. Most of time I end up feeling slightly frazzled when doing it, so I would love it if someone offered to keep something from falling/spilling.
  • “What is your child’s story?”
    • The vast majority of us are happy to educate you about feeding tubes and how our children ended up with them. Our kids are little fighters and we are proud of them.
  • “Is it safe for your child to eat by mouth?” – “Do they eat anything by mouth?”
    • This is always a great question before offering a child food (like at a family dinner). It’s just respectful and keeps everyone safe/happy.
  • You are allowed to be curious. Just ask us about our children. Like I have said before, we are happy to educate.

 

 

Standing on her own two feet

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It’s official, Lyra can stand on her own (with some support from an object). While this is a major milestone for any child, this is truly amazing for Lyra. Lyra has missed so many other milestones. She still doesn’t use her hands and arms well, and she still does not roll from her back to her stomach (she is close). But, if she holds our hands, she can pull herself up and stand!

This is what I am choosing to focus on today. I feel that many parents of special needs children do this. We fully celebrate the milestones our children reach. Lyra goes home from the hospital tomorrow. While we have been able to get her hydrated and greatly reduced her throwing up, we have not found a solution that stops the puking. We also do not know 100% why she is throwing up so much. The doctors have theories, but there really isn’t a test that can provide us with definitive answers. I am excited to go home, and I am worried that we will just end up right back here. It is a constant rollercoaster.

But today she stood on her own two feet. My little girl is defying the expectations the original geneticist gave us. She is a loving, engaged, active, strong little girl. Her tummy just doesn’t work quite right.

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P.S. Her onsie says “Loved”, you just can’t see it.

Lyra is __________

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I have recently noticed that I often describe Lyra by her diagnosis. When I introduce Lyra I frequently only mention her age and the negative things: she doesn’t eat, she is very small, she had a feeding tube, she has two rare genetic disorders, etc. I think this is in part because I spend so much time introducing her to doctors. They want to know all of things about her.

But Lyra is more than her diagnosis. She is more than her complications.

Sometimes as a mother I get so focused on what is wrong with Lyra, I forget to focus on what is right. She is a happy, loving, joyful child. When she smiles, she does it with her whole body. She scrunches her face, arms, and legs all at once. She loves her daddy and is mommy’s little girl. She is curious and carefully watches the world around her. She soaks it all in and loves to be around people. While she comes with a long list of difficulties (many of them not unique to her), Lyra also brings joy to our lives.

So one of my many goals is to do a better job introducing Lyra and not her diagnosis. She needs that example. As she grows, she needs to know that she is more than what is wrong.