Monthly Archives: August 2016

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.

A Child Like Mine

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I try not to write posts out of anger or frustration, but this one has been brewing in my brain for at least a week now. Recently a mom in one of my support groups posted a conversation between herself and a “friend”.  In the conversation her friend said, “I am afraid to get pregnant because I am afraid of having a child like yours.”

Let that sink in.

A child likes yours.

A child like mine.

A child like Lyra…

I have discovered that many people can’t see beyond the medical complications. Don’t get me wrong, I have been caught up in them myself, but they are NOT who my child IS. For some people, all they see if this:

 

To be honest, while no one has actually said anything like this to me directly, I see it in their actions. People fear telling me they are pregnant. Why wouldn’t I be happy for them? If they are happy about it, it’s a great thing to celebrate. Life should always be celebrated. I have seen people visibly flinch or cringe when seeing her feeding tube. It doesn’t look any worse than most piercings. And I have seen strangers look at this happy little girl with sadness in their eyes because she eats differently.

Beyond all of that, by defining my child by her medical conditions they are missing out on this:

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and this

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and this

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and this

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In the end. I hope everyone has a child like mine. A child like Lyra. Because Lyra is joyful and lights up a room like no kid I have ever seen. When she sees someone she loves, you know it because she shows it with her whole body. She is loving and happy and I wouldn’t trade her for the world.

So, while I would never wish the trials Lyra has had upon any other family, I do hope that you have a

                     Child

                                 Like

                                           Mine

Sleep training (aka not sleeping)

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So, some people may say we are late to the game in terms of sleep training, but Lyra does everything at her own speed. Plus, we haven’t been able to let her get too upset or she throws up the precious calories we are trying to keep in her. Right now she is at hour three of putting herself back to sleep. At least tonight it started at 8:30 pm instead of 2 am (when she normally does this). Of course, as I write this she falls asleep.  Anyways, I am up so I should finish!

This is how a typical night of “sleep training” goes in our household.

  1. It NEVER happens on a Friday or Saturday night. This means I am the one who is up with her. It is not that the hubs isn’t willing to get up, it’s that he works all day and we need him to be functioning. I have kicked his butt back to bed more than once…. unless Lyra pukes.  Then I he helps me remake the bed before I send him packing.
  2. Sometime between 12 am and 2 am we hear a little fuss come out of the monitor. We turn on the camera to see if she moving around, hoping that it is just a little blip and she goes back to sleep.
  3. Slowly, she starts moving. Do we leave the wonderfulness that is the bed to pat her back in the hopes she goes back to sleep? Or do we let her fuss a little longer and hope she doesn’t fully wake up? ….. Normally we decide to pat her back. At this stage she is still our adorable, lovable ray of joy.
  4. We reach into the crib making little shushing noises and pat her back – I should mention, Lyra sleeps on her side due in no small part to her history of vomiting in her sleep – Anyways, she fusses a little more, rolls on her back and then does the one thing we know means trouble……
  5. She opens her eyes, looks right at us, and starts blowing bubbles.
  6. She is no longer cute.
  7. I walk out of the room. Normally I am saying a few choice 4 letter words under my breath.
  8. Then comes the extra melatonin (the suspect she doesn’t produce very much), sometimes Tylenol (maybe she has a headache), and the waiting for her to STOP PLAYING!!!
  9. That’s the thing, she isn’t even upset. There is no “letting her fuss it out” because there is no fussing. I think  fussing would piss me off less.
  10. At this point I am on the couch with the video monitor (remember the whole “hubs needs to sleep” thing?). I have to check on her regularly because she is hooked up to her overnight feed and there is a serious concern about her disconnecting it or pulling out her tube. I watch practice the “pike” position – feet behind the head – and listen to her blow bubbles and raspberries….. it’s really cute at 3 pm.  At 3 am… not so cute.
  11. Sometimes she is producing so much spit and having so much fun she gags herself and pukes all over her bed. This is when the hubs comes in! After I change her and he changes the bed, he is sent back to sleep… I don’t think he actually sleeps much though.
  12. By this point it is normally around 3 am and I am not the most patient person in the world.  In fact, patience has gone on vacation to the beach because she was about to lose it. I lay down on the couch thinking about how I will word the ad on ebay in the morning. At some point I drift off to sleep.
  13. Later on I wake with a start and realize there is no more sound coming from Lyra’s room. Sometimes I drag myself off the couch and return to bed, sometimes I don’t. All I know is, I always wake up to the smell of fresh coffee – that would be the hubs doing.

While it seems like the never ending night when it is happening, I eventually see this face and notice that it is cute again:

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I decide not to post anything on ebay (family joke), and we go about our day – although I do desperately try to find a time to nap.

Everyone tells us that we are doing everything correctly, and that it will get better. Until then, coffee is my best friend and I am trying to remember all of those darn breathing exercises from yoga.