Holidays

Holidays

The holiday season can be a little tricky for families and kids like mine. Schedules are thrown off (something much more challenging than for an average child), the typical sensory overload (also frequently more challenging for special needs children), and exclusion.  Yes, I said exclusion.  At a time of year that is about togetherness, understanding, celebrating humanity, and love I have read heartbreaking story after story in my support group of children and families being excluded because they are different. To be honest, I have had my own struggles this season with feeling a bit blue when I reflected on the friends that have drifted away since having my daughter.

Then tonight happened.

Keep in mind, tonight is Christmas Eve AND the first night of Hanukkah.  In my household we celebrate both holidays because my husband is Jewish.

Tonight dinner was at my aunt and uncle’s place.  Let me paint the picture: There is my little unit (hubby, Lyra and I).  My divorced parents who have rediscovered friendship in the past 5+ years. My sister and brother-in-law, each with two children from previous marriages (ages 16, 13, 8, and 5).  My brother, my cousin, and my nephew’s friend.  Add into it that I was raised in a secular, non-religious, household; my husband is Jewish; and my brother-in-law is Episcopalian.  Some people in the group are very liberal while others are quite conservative. Sounds like a recipe for disaster, right?

Not so much.

After the the Christmas toast we listened to my husband recite the prayers and watched him light the candles. Before eating, my brother-in-law said grace. In our household,it doesn’t matter what you believe, there is nothing wrong with being grateful for what you have. The 16 year old and his friend sat with the 5 and 8 year old like it was totally normal.  And there was a place for my non-eater at the table, and she even ate a little bit.

My point is, my daughter couldn’t have been born into a better family. While I hear again and again about children with tubes being purposely excluded by extended family members, I know that will never happen with my child.  I also know that the inclusion extends well beyond my family who lives near us. I could take my daughter to my great aunt and uncle’s house and she would be just another one of the babes crawling around. Not a single one of my cousins would fear her or her medical needs.  And they would never prevent their children from playing with her.

My family is a group of people that believes it is okay to be different.  It’s okay to have different thoughts, beliefs, interests, etc. It’s okay to take a different path in life or to stumble along the way.  It’s okay to need help and it’s okay to have to do things in another way (like eat). We believe in being kind and inclusive. Basically, the only not allowed in my family is being an asshole.

Are we perfect?

Far from it.

We have our own little conflicts.  But in the end, we are all family.  My daughter is so blessed. She will never know anything but love and inclusion from those closest to her. And I am so lucky to have these people around me.

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Lyra, her uncle ,and her daddy

Fitting In

Fitting In

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.
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:

To my friend

To my friend

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.

To the doctor who told us to expect very little from Lyra Jane

To the doctor who told us to expect very little from Lyra Jane

To the doctor who told us to expect very little from Lyra Jane…. I don’t have anything nice or appropriate to say.

Right after Lyra’s first surgery, when she was about 7 or 8 weeks old, we received the devistating genetic diagnosis. The geneticist sat us down, and without ever looking at Lyra Jane, told us she would have pronounced mental and physical handicaps. He implied that she wouldn’t be social or engaged. He acted as though she would never walk and possibly never talk.

He. Never. Even. Looked. At. Her.

The truth of the matter is that doctors don’t know what Lyra will be like because she is the first documented case of someone having both chromosome abnormailities. What he should have said was: “she will have challenges, but we just don’t know where she will land.” That would have been much more accurate and it would have been honest. However, I seemed like his ego got in the way and he had to have all the answers.

He never examined her, even though she was only 3 feet away. She was just results on a sheet of paper to him.

So to that doctor, Lyra Jane has learned:

  • To use her hands
  • Clap
  • Eat (though not enough to ditch the tube)
  • Roll over
  • Sit up on her own
  • Use a walker
  • Babble
  • And many more things

She is social, engaged, and encredibly loving. While she hasn’t quite figured out how to express herself with words, she is working on it! She also had a sense of humor and cracks herself up all of the time.

And she is one determined little girl.

So doctor who told us to not expect much, here is where we stand just over a year later. We expect nothing, and celebrate everything!

Our Anniversary 

Our Anniversary 

On this day three years ago I married my husband for the second and the third time. At that point I thought I had a true partner and team mate in life.

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I knew nothing.

I knew nothing of the quality of man I had truly married. At our first anniversary I was sick as a dog with morning sickness. He would go to the grocery store almost every day in the hopes of finding something I might keep down.

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We spent our first anniversary in Mexico

Once our daughter was born, the shit hit the fan and he and I were repeatedly faced with making stressful medical decision after stressful medical decision.   We always made them together, even if we didn’t always agree at first. Every option sucked, to be frank, but it was a discussion. In the end we both stood behind each and every decision we made as a team.

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Lyra in the NICU at Children’s National

By our second anniversary we had moved states. Our daughter had just had a major surgery and very stressful hospitalization (yes, some are more stressful than others), and he was now the sole breadwinner. Things were still rough with our baby girls, but he stood next me the whole time. And again, we problem solved together.

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So here we are, at our third anniversary. Things are much better. Lyra is more stable and learning new skills almost daily. Her little personality has exploded into a huge personality. And there is my husband, enjoying every second of it. He is still the sole breadwinner and works East Coast hours while living a Mountain Standard life. After long days he takes one on one time with Lyra to give me a break. And at night, when she is up, I always tell him to go back to sleep, but I know he doesn’t. He listens to see if I need help. He loves doing bath time and gets her dressed for bed most nights. He insists on being the one to brush her hair and would rock her to sleep if she would let him.

He is my partner in every way. Our family would be missing a key piece without him.

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What to do at 2 am

What to do at 2 am

As my high school biology teacher used to put it: Adapt, Migrate, or Die…. I am am choosing to adapt.

For those of you who follow me on Facebook, you know that the whole sleeping thing has not been going well for awhile now. I posted about this not long ago, and since then things have not improved.  I think it has been about 2 months of broken sleep. Now, not every night has been a bad night.  I think I normally have about 5-6 “bad” nights a week. The thing is, they have become so frequent that they really have become my new normal and I have learned to adapt. Before I go into the crazy stuff that I do at 2 am, let me talk about what I have learned:

  • Going in and patting her back, or trying to rock her back to sleep will only make me really frustrated. She is awake and playing. Normally with her feet. No amount of patting or rocking is going to make her go to sleep faster.  It’s better if I just watch her on the monitor.
  • SLEEP IN!!!! After one of these nights she typically sleeps in.  Therefore, so do I. I just prep everything to start her daytime feed and Mark starts it when he gets up to work.
  • Stay busy. I have monitor her on our video monitor due to her tube when she is up. While I would love to lay down, it just ends up being crazy broken and light sleep that leaves me feeling more exhausted.
  • When emailing your child’s doctors at 2 am, take a deep breath and re-read things before hitting send. Luckily I haven’t embarrassed myself yet, but I have been quite desperate in a few emails.

So, what do I do when I am up for 2.5-4 hours in the middle of the night? Here is a list!

  • Exercise! – One of the first things to go from my daytime activities when all of this started was exercise. Given, I can’t get a good cardio workout it, but I can do some basic strength training. I have found this works better than coffee to wake me up.
  • Laundry – I fold laundry….. lots of laundry.  I can’t put it away in the middle of the night, but at least the first step it done.
  • Write in my blog – This is another activity I don’t normally have time for during daylight hours. If I did work on this during the day while she sat in her crib for hours, it would be child neglect. At night, it’s sleep training!
  • Work of projects – I work on my needlepoint, the family calendar and any other silent creative project.
  • Watch trashy tv shows (very quietly) – This is something I can’t do during the day and something my husband does NOT enjoy watching with me. So, I can do it in the middle of the night in peace.

Normally by the time I get through a couple of the activities on this list, Lyra has drifted back to sleep. There really isn’t anything else I can do to make her go back to sleep.  Trust me, I have been working on it with her doctors and therapists. So, I just have to adapt and hope she grows out of this phase soon. Until then, I have already exercised and written in my blog tonight.  I guess now it is time to fold laundry!

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We took this picture to send to a friend back in DC as a way to say “hi”. It’s one of my favorites.

It’s about more than my child

It’s about more than my child

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…

Breath

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

A Child Like Mine

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)

Sleep training (aka not sleeping)

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.