Why Birthdays are a Big Deal

Why Birthdays are a Big Deal

Lyra is turning in turning 5 in a week.  Every year her birthday makes me very reflective, and this year feels like a major milestone.  I think sometimes people are confused about why I make such a big deal out of Lyra’s birthday.  I mean, kids have birthdays.  They grow up, they move forward.  That is what happens.  Well, that is what happens for most people.  I think I can explain it best with a story:

It was March 2016.  Lyra was 10 months old.  We had spent 2 weeks in the hospital trying to get her to keep enough fluids down to be at home.  Finally, we got her there and went home thinking we had figured it out. About 24 hours later she had been re-admitted because of uncontrollable vomiting.  On an IV, with anti-nausea medication, and nothing going into her stomach, she was throwing up every 5-15 minutes.  Occasionally we would get an hour or two break.  This went on for 2-3 days and the doctors didn’t know what was wrong.  At one point I stood out in the hallway with the attending physician and one of the residents.  I said to them in a choked up voice,

“the hardest part about Lyra being the only known case to have both of her genetic disorders is the fact that no one can tell us how long we get to keep her.” 

Part of me had hoped that they would say something comforting.  But these were/are good doctors.  They weren’t going to lie to me.  Instead, they looked at their shoes and shuffled their feet a little.  We all stood there in awkward silence for a few moments, and I honestly don’t remember anything about the conversation after.  What I do remember is really realizing and accepting that every day/week/month/year that I get to keep her is important.

Eventually Lyra did get better.  Turned out she had caught a particularly nasty GI virus, and after two more weeks in the hospital we took her home again.  This wasn’t our last hospitalization.  We were back about 6 weeks for another stay.  That one we celebrated her first birthday in cafeteria at Children’s Hospital.  She was healthy enough to go downstairs in her wagon to see everyone.  She was back again 26 months after that for the longest and scariest stay yet.

While we have been lucky so far, we don’t know how long we get to keep her. So, every birthday is a big deal.  We try to make every birthday meaningful.  We celebrate her, and those who have helped make her life richer.  In 7 days Lyra turns 5 years old, and I am going to make a big deal out of it, because I got to keep her for one more year.

We always raise money for an organization for Lyra’s birthday. This year we are raising money for Children’s Hospital of Colorado.  Please click here if you would like to contribute in her name.

 

Someone Sees Me

Someone Sees Me

We have all seen the “I see you” articles written in the acknowledgement of the struggles someone else is going through.  The ones I have seen the most are parent-to-parent.  They mean a lot, but I still sometimes feel like I’m yelling into a void or am invisible to people who should recognize I need help.  I get tons of help and support from family and friends.  However, there are times I need help from professionals.  Finding those professionals has been nearly impossible, but today I felt seen.

Today I was at an appointment for Lyra and I was just chit chatting with the provider working with her. Somehow we got on the topic of support for parents (or lack there of). This woman got worked up and said, “THIS! THIS IS WHAT I AM TRYING TO GET THE SYSTEM TO UNDERSTAND!”  And then she said the one thing that showed me she really sees us:

“We give these parents a diagnosis for their child that alters their whole world and what that world will look like in the future.  Then we (the doctors/therapists/etc) just expect these parents to pick up and charge forward.  We give them no room to grieve the loss of the child that might have been.  We make them feel ashamed of that grief.  We don’t acknowledge the parents can love that child desperately, and absolutely step up to the plate, but also grieve the loss.”

Now, parents in my community talk about this with other parents.  We give each other permission to feel that grief, but it feels like the system doesn’t.  It doesn’t even want to believe that the grief and trauma exists.

I told this provider about my frustrations.  That I can get therapy for Lyra, but I have no way of getting it for me.  And when I have tried, the people in the mental health field I have spoken to seem to be completely unequipped to handle me.  You see, the system knows how to handle and counsel someone who has lost a child.  And the system knows how approach someone with PTSD after they have been removed from a situation and they are away from the trauma.  But for those of us who live in the middle? The system seems clueless.  You see, the events that have traumatized me aren’t necessarily in the past.  The most traumatic ones have a decent chance of happening again.  So my anxiety isn’t unfounded.  And my flashbacks could also be foresight. The system doesn’t know how to deal with that.  I have been told by mental health professionals to:

  • “only focus on the positive things”  – if I could do that I wouldn’t have sought professional help
  • “just be more grateful”
  • “just let others do more of the work” – I have quite a bit of help and support, plus I still want to be her mom and take care of her
  • “I bet your hormones are off”
  • “You just need to take a multivitamin”
  • “Go see this doctor, he will put you on drugs” – I am NOT against medication (I have taken it in the past with very beneficial results), but I also need other tools for coping.

There were other comments, but you get my point.

All this being said, I am okay most days.  Could I be better? Yes.  Do I think I would be better with help from a mental health professional?  Absolutely.  But I am lucky and have lots of support.  I have family and friends I can call.  I have family and friends who help.  And I know that I am not alone, even if it feels like that sometimes. And today, the system saw me.  Or at least, someone in the system did.  And that person is waving a red flag and shouting for us.  Because she knows that healthy parents make happy homes for kids who just need lots of love.  And us parents, love those kids more than we can truly express, even if we grieve for them sometimes.

 

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One of those moms

One of those moms

One of those moms.

Oh how I hate that phrase.  But, you know what I am talking about.  The mom who is always calling to complain about why her child didn’t receive something.  That mom who is always asking for something, but not always willing to volunteer. The one who is always sending emails, requesting meetings, and ……. dare I say it…… asking to speak to your manager/supervisor/etc.  The mom who posts nasty things on social media and tags everyone they can think of.  They yell and make a scene in public places.  You know, those high maintenance demanding moms.

I hate those moms.

I hate that some days I have be one of those moms.

I know a lot of special needs parents get labeled as “one of those moms.” I can understand how, from the outside, we can seem short fused and unreasonable. To be honest, there are some that are short fused and unreasonable (just like in the general population of people).  However, many of us don’t want to play this roll.  We just feel like we haven’t been given another choice.

So why am I short fused and unreasonable?  I’m frustrated most of the time.  I spend more time making phone calls, sending emails, filling out paperwork, going to meetings, and scheduling things than I ever did as a working professional.  Now, I like to think of myself as a smart and capable person.  I have a master’s degree and have worked in a few jobs that require understanding complex material (like laws).  However, becoming a special needs parent and having to navigate a whole new system came with no training, no manual, and no one seems to know the answer to your questions.  It’s maddening.

Need access to a service?  Here fill out these 10 pages of paperwork and get letters from a few of your child’s doctors.  Once that is done, you will be denied on day 85 because you didn’t call this other office first to make sure your paperwork was processed by the right people.  Okay, after 5 days of phone calls the right people have the paperwork now, but there is an 11th page that was never given to you that needs to be signed.  Since it has been over 90 days since this process was started, you need to start from the beginning.

Could a certain type of therapy help your child?  Great!  Bring them to a 2 hour evaluation.  Listen to all of the short comings your child has (yes, I know, that is why they are here).  Then a scheduler will call you to book some appointments…..  You wait two weeks…..  Maybe the office is really busy….. Suddenly it’s been a month and you realize you still haven’t heard back.  Finally you start calling to try to book something, but the schedulers don’t have the right information from the evaluators.  You call back a week later to find out there aren’t any open appointments that fit into the times you have available. Suddenly a few months go by and they finally have a spot for you, but it’s been so long that now you have to do another evaluation.

The first two stories are not mine, but the next one is:

Lyra needs a new walker.  We have had to her old one for over 2 years and she has outgrown both the style and the size.  So, I did what any responsible parent would do and called my durable medical supply company (you can’t buy from the manufacturer or online).  I started this process around the beginning of June.  They couldn’t send out a sales person to meet with us until August.  When they said who they were sending, we will call her Nancy, I was hesitant.  You see, we have worked with Nancy before and last time she showed up without any materials (not even a brochure to show us sample walkers) and then forgot to order some of the parts needed.  However, I was desperate and I didn’t want to be a pain.  Plus, everyone has a bad day.  I was willing to give Nancy another chance.  Well, Nancy came to visit in August, and we really just weren’t sure what would be the best fit for Lyra.  We decided to wait until Lyra started working with her new physical therapist because the PT clinic had a bunch of walkers Lyra could trial.  Her first appointment was soon and Nancy told me she loved Lyra’s new PT and had worked with her for years.  The new PT would just need to send an email detailing what walker we decided on and Nancy would start the process.

So, the first week of September we meet with the new PT and we pick out a walker.  Lyra’s physical therapist sends an email to Nancy to which Nancy replies, “Mom (me) decided not to get a new walker, so I will wait for her to contact me and tell me differently.”  The physical therapist forwards me this email.  While I am upset that I have to take extra steps, I try to be understanding.  Maybe it’s a miscommunication? Maybe it’s a misunderstanding?  Those things happen.

I

will

be

patient

I reply to Nancy and keep the PT in the thread.  I explain that she must have misunderstood.  That we do want a walker, we just needed to pick out the right one.  We have picked it out! Please, Nancy, start the process of ordering this walker.  Nancy’s response……. nothing.  I wait two weeks and reach out again.  Still radio silence.  After another week has done by I start making phone calls.  At this point we are in October. I spend hours getting passed from person to person and leaving messages with no one calling me back.  I am furious.  I am frustrated.  I don’t have any other options to get this walker.  This is the only durable medical company that services my area. Finally I get ahold of the regional manager in charge of my area.  I am officially “Karen who needs to speak to your manager.”  I hate being Karen.

Luckily the regional manager was WONDERFUL.  She set me up with a new sales person and we finally got the ball rolling.  We are now in the first week of December and I am happy to report that I will be picking up Lyra’s new walker in a few days.  But this took six months.  It shouldn’t have taken six months.  It took appointments, emails, phone calls, and plenty of paperwork.  And this wasn’t the only project I have been working on for Lyra.  In fact, I now have a white board to help me track projects.

So, next time you see “one of those moms”, try to hear the whole story.  They might be more reasonable than you initially thought.

A Healthy Baby

A Healthy Baby

There are some topics in the special needs community that are very controversial.  While I tend to keep my opinions to myself on these topics, there are a few that I am okay talking about in a public forum.  One of them came up again today, and has been sitting with me.  Some people in my community get really upset when they hear a pregnant woman comment that they “just hope the baby is healthy.” That comment has never bothered me, and never will.

Why do some get so upset when they hear that comment?  Some assume that the person saying it would reject a child that is not healthy, or somehow love it less.  Sometimes the parent with the special needs child feels judged or pitied for the situation that they are in.  While there are other reasons I have come across, those are the two main ones.

Here is how I feel:  OF COURSE THEY WANT A HEALTHY CHILD!  WE ALL DO!

When someone says “I just hope the baby is healthy”, it is as simple at that.  They hope that it is healthy.  I hoped that my second child was healthy.  In no way did that mean I was rejecting Lyra for not being healthy.  In no way did it imply that I loved her any less, or that I would love the new baby less if he wasn’t healthy.  Heck, if I could wave a magic wand and make Lyra healthy, I would!  I wouldn’t do it because it would make my life easier, or because it would somehow make me love her more.  I would do it because it would make HER life easier.

Of course people want to have a healthy baby.  No one gets pregnant and thinks, “it would be really great if my child had to be in a hospital all of the time.  I just hope that they have complications that require emergency surgeries due to life threatening complications.  It would be amazing if I had to see the fear in their eyes when they are held down when someone places an IV.  They won’t understand that the IV will help make them better, but that’s okay.”  Or, “I would love to have a child who struggles to interact with their peers, and the world around them in general.  It would be really nice to have a child who can’t seem to find a way to tell me the simplest things they need.”  If they did think that, they shouldn’t be a parent.

……..

Really people?  Let’s be honest.  When we all were pregnant, we hoped the baby was healthy.  When they baby wasn’t, when we were thrust into this world, it didn’t change how we felt about that baby.  We didn’t love that baby any less.  We love that baby with everything we have.  We fight for them, celebrate them, cry for them, and care for them. We do this because they are our baby.  Do we STILL wish they were healthy?  Yes.  Life would be easier for them if they were.  In the end, don’t we all want that for our children?

So, if you are pregnant how, or become pregnant in the future, don’t be afraid to tell me that you “hope the baby is healthy.”  Also, don’t feel guilty for thinking it. I hope that your baby is healthy, too.

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Me with both of my babies

 

Expanding our world

Expanding our world

Those who have known me long enough know that I am a relatively private person.  In fact, I think many were surprised when I started to write this blog.  At first it was something very few people knew about, and over time I have slowly expanded my audience.  However, many of you have noted and commented that I have not really written in the last year.  To be honest, a number of big events have happened in the last year (including the birth of my son).  Some of those events have impacted my mental health, and while I have struggled with anxiety since I was a teenager, the last year has put me to the test.  When I do struggle with my anxiety, I tend to close my world to all but a few close friends and family.  While I fully intend to write at some point about my struggles with mental health as a special needs parent, that is not what this post is about.  This post is about how, despite everything I have been struggling with, I have learned the importance of expanding the world around myself and (more importantly) around Lyra.

As we near the one year anniversary of Lyra’s scare last year (please see my previous post), I often reflect at how far she has come.  Yes, I still deal with the trauma of that event, but it honestly isn’t where my mind goes first.  What I think about most is how big her world is has become.

You have to understand, when you have a medically complex/fragile child, your world is quite small the first three years.  All therapists came to us.  We rarely traveled outside of the state.  Oh, and forget things like daycare.  Her little body couldn’t handle exposure to all those people germs. Since Lyra is also very delayed physically, she couldn’t participate in any sort of toddler dance classes or gymnastics or anything.  We had this small little world of family, a few close friends, doctors/nurses, therapists, and a case manager to hold our hand.  When Lyra turned 3, that all changed.  She was no longer in early intervention and many of the services that help guide us were no longer there.  Getting access to many new services meant entering the public school system.  It was honestly terrifying.

Little did I know what was in store for her…. and me.  Because of Lyra’s health issues she started preschool a month late, in October.  I was terrified to leave my baby with people she didn’t know, hooked to her feeding pump, and exposed to 15 other children in her classroom.  She couldn’t communicate to them what she needed, if she was scared, if she was sad.  What happened over the next 7-8 months was nothing short of astounding.  Lyra went from almost never using her walker, to it being her primary mode of transportation.  She went from barely eating anything, to being interested in food and developing new oral skills.  Before she primarily ate yogurt, purees, and things that easily melted her mouth.  Now she eats cut up fruit and pieces of peanut butter and jelly sandwiches (she still eats only very small amounts and gets about 95% of her calories through her tube).  Most dramatic is her cognitive change regarding language/communication.  Before preschool it didn’t seem like Lyra understood the point of language.  She didn’t seem to have any motivation to learn how to communicate with us.  She was happy and easy going and didn’t seem to be interested in what objects were or in asking for things.  Now, she gets it!  She wants to communicate.  We still haven’t figured out how to do it, but we are working on it.

Lyra’s world has become so much bigger.  She has meant so many more people and developed skills at a rate we have not previously experienced. She has developed bonds with adults outside of our little circle, and they have bonded with her.  It makes me smile to see how much she has embraced.

I have also learned to embrace a bigger world.

What I have learned in the last year is that there are more people than you know who are ready to support you.  It can be a stranger holding your hand while you cry in a hall at the hospital in the middle of the night, to a mom in your child’s class who makes you feel like you’re just a normal mom too. Not only have I made new friends in the past year, but I have opened my life to old ones I haven’t spoken to in over a decade.  While I have spoken before about my willingness to let go of those who are unable to go on this journey with me, I have learned this past year that more people may be willing to walk with me than I had imagined. I simply had to open the door to give them the opportunity.

So, as we go along into this next year of Lyra’s life (how is she already 4?) I have to keep in mind what having a bigger world has done for her.  Even if it is scary for me, it’s better for her now.  And she can handle it…… And so can I.

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Lyra and her baby brother
Sometimes, I don’t want to talk about it

Sometimes, I don’t want to talk about it

It’s been months since I have written, and a lot has happened in those few months.  It started with general writers block, than my life just got a little crazy.  And frankly, I didn’t want to talk about it.  Normally I am very much an open book about my life, and life with Lyra.  I have been willing to share my world, even when things have been ugly, and sad, and scary.  The past few months have been different.  I’ve needed some time off.  However, there are a few topics that I would like to share my thoughts on, and I couldn’t really address them without addressing my extended absence.

So, things that have happened since my last post:

 LYRA TURNED 3!

The great thing about this was how uneventful it was.  Between her second and third birthdays, she had a great (and stable) year.  It was really nice.  We also got to have her first birthday celebration in the backyard of our new house.  It was a lovely moment, and there just wasn’t much to share about it.

I’m Pregnant

I found out I am pregnant the day before Mother’s day.  The hubs and I are very excited, but it’s a little scary for us.  Needless to say, things didn’t go to plan last time.  So, we’ve been a little quiet about the pregnancy this time around. Also, I was VERY sick (I had Hyperemesis Gravidarum) for the few months of my pregnancy. Think morning sickness….. on steroids.  While medication and an IV with fluids made a huge difference, I was exhausted and lost weight.  I am doing much better now, and all scans on baby boy have been good so far.

Lyra almost died

This is the part that really threw us for a loop and caused me to really pull away from social media, and general communication.  I rounded up the wagons of those people who I needed most, and had to focus on my daughter.  For those of you who weren’t in the loop, here is what happened:

On July 12th Lyra started throwing up.  Not all that uncommon, but it was enough that I knew that I needed to take her to the ER for some IV fluids and IV medication.  Sometimes those two things are enough to stop the vomiting and let her come home.  This time, it was not enough.  She popped positive for a UTI (not her first) and we started antibiotics.  No big deal.  We figured we would be admitted for about 24 hours, and then we’d go home.

She wasn’t getting better on the 13th.  Still, no need to panic.  Sometimes antibiotics need 48 hours to really make an impact.  We’d be home soon enough.

Then I woke up at 6am to change Lyra’s diaper on the July 14th and something was very wrong.  Lyra’s stomach had ballooned and her coloring looked awful.  She was rushed into scans and it was determined she had a bowel obstruction.  They warned us before she went into surgery that things would likely get worse, and she may lose part of her bowel.  I don’t think I really listened to them.  Surgery went well, and the bowel was still alive.  However, it had ruptured and fecal matter had leaked into her abdominal cavity.  Also, she was so sick by the time surgery started that she had a rough time coming out of it.  Her kidneys had shut down.  She had to be on a ventilator in order to breath.  Her blood pressure kept crashing for the first few hours.

This was only the beginning.

In the weeks that followed, Lyra had one complication after another and we spent a large amount of our time in the PICU.  She had multiple infections, her lungs took awhile to recover, she wasn’t responding normally to certain types of medications, IV access was a challenge, and her bowels wouldn’t wake up.  It was the worst summer of my life.

But we got to take her home.

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So here we are.  It’s now October.  Lyra is stable and has started school, my belly is growing every day, and I am ready to talk about things again.  I’ll be honest, I probably won’t want to talk about this summer still.  It’s not that I pretend it didn’t happen.  I have not pushed my feelings about it into a corner and hidden them away.  I just…. don’t want to talk about it.  I need to move forward.  And, hopefully, I will be able to sit down and write about the other topics I have brewing in my head.

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Lyra and her cousin in the pumpkin patch
A Day in the Hospital

A Day in the Hospital

Even though it has been almost 2 years (knock on wood) since Lyra’s last hospitalization, I wanted to describe what a day at Children’s Hospital Colorado can be like, and what the people who work/volunteer there do to try and make it a tiny bit better.  Why? Because Lyra is turning 3 years old, and we are trying to honor some of the people who have been on this journey with us by giving back to the hospital.  The little things these people do to try and provide comfort make all the difference in the world.

….

It’s a bad day.  In fact, it’s been a bad couple of days, but you weren’t sure where to draw the line to bring your 9 month old in.  This isn’t your first time in this emergency room. You look around for familiar faces among the nursing staff and don’t notice anyone. They were expecting you.  The GI department had called ahead and told them to get a room ready for your baby on the 8th floor, but it’s respiratory season and there aren’t any beds open.  So, you wait in a private room in the emergency department.  You’ve laid your baby on the big bed, propped on her side, as you rub her back.  You would hold her, but your arms are aching from the days of rocking a sick child.  You see her little belly start to convulse and you quickly grab a towel from the stack next to her to catch the green bile she is about to throw up.  It’s the 3rd time she has thrown up in the last 45 minutes, and the 18th time in the last 4 or 5 hours. 

The nurse happens to walk in on this scene.  You smile at her and try to appear calm while your heart is breaking with helplessness. She sees your pale face, dark circles, and watery eyes.  She helps you clean up and grabs a few more towels.  She leaves the room, but comes back a few minutes later with a bottle of water and a couple packets of crackers for you.  You realize how long it’s been since you last had something to eat or drink. She checks your baby, let’s you know they are still waiting on a room, and someone will be in to place an IV soon.  You are dreading holding your baby down while the IV is placed, but looking forward to the piece of mind it will give you.  With an IV they can do so much, especially now that your baby’s GI system seems to have basically shut down. 

Hours later you are finally escorted into a room on the 8th floor. The transporter drops you off, then heads to the nurses station to let them know your baby is there.  It’s just you and your baby in a plastic and wood room with a huge metal crib and computer monitors.  You see a little bag on a chair with your baby’s name on in.  In it is a teddy bear and a big red and green scarf.  Its so soft and comforting.  In that moment, alone with your baby and that teddy bear, you lose your composure for a second.  You allow yourself to cry at the unfairness of it all, and the thoughtfulness of the gift. Everyone knows it’s a really bad day, but people are trying to make it better.

12 hours later they are still trying to figure out what is wrong with your baby.  The IV is giving her plenty of fluids, but she is still throwing up 5 or 6 times an hour.  At this point she hasn’t had anything in her stomach for over 24 hours.  Mama and baby are exhausted.  The room has started to take on a slight stench of bile from all of the soiled towels and blankets.  Then, someone lightly taps on your door.  She is there to clean.  As she quickly moves around the room, you find out that she is from Ghana and is training to be a nurse so she can work in a mother and baby clinic back home.  She gives your baby a sweet smile as she makes sure to scrub a spot of some unknowable yuck off the floor.  She takes the laundry out carefully closes the door.  The room smells clean and fresh.  Somehow it feels a little warmer as to sit and rock your little one.

It’s about 3pm and your baby is finally sleeping comfortably.  Whatever is causing the vomiting seems to be slowing down.  Between the medication and the extra fluid your baby is having dripped into their veins, they obviously feel better.  You want to sleep too, but you are also hungry and a little stir crazy.  You have been holding your baby for what feels like days, and you just need a moment.  You let the nurses know that you are heading downstairs to get some food and head out.  As your walking through the main lobby, not even wanting to know what you look like, a girl walks up to you.  She’s probably 14 or 15, and in her hand is a fresh cup of coffee.  She’s with a group who has set up a coffee cart and they are handing out free coffee to those living in, and visiting, the hospital.  The smile she gives you and little bit of comfort mean the world.  You sit on a bench in a quite corner, take a deep breath, and a slow sip. For a minute you disconnect and slow down. You recharge, and head back up to your baby’s room.

….

These are all moments that I have had during Lyra’s seven hospital stays at Children’s Hospital Colorado. These moments -and many more- have stuck in my memory as touchstones during some of the worst days, weeks, and months of my life. I am so grateful for the humanity the people at Children’s continue to show us, when we could simply be a number, a diagnosis, or a problem. Because of all of this, our family is trying to give back and thank them for the help they have given us on this long, crazy, heartbreaking, and joyful journey.

Click Here to Donate

A Place at the Table

A Place at the Table

Meals are a big deal in my family.  Anyone who has experienced a Thanksgiving, Christmas, Easter, birthdays, or weekend meals with us knows that we aren’t fooling around.  Anyone who has joined us also knows that we always find a place at the table for you.  We have been known to adopt individuals, couples, and entire families into our gatherings.  To be fair, a typical family meal starts out with a head count of 14, so adding a few more people really isn’t a big stretch.  The point is, everyone is welcome to sit with us.  To talk with us. To nourish their bodies and their souls with us. Because, let’s be honest, having a place at the table is about more than eating food.

So what happens when someone doesn’t eat? Do they get a place at the table? Should they have a place at the table? The answer to this is an emphatic, loud, bold,

YES

Having Lyra join us at the table has been key part of her feeding therapy.  After all, we are pretty sure that she doesn’t ever really feel hungry.  But there is more to eating a meal than simply filling your stomach.  There is a social aspect.  Meals are a time when you bond with the people around you.  For my family (and many others), meals play a key role in our social dynamic. Not having a place for her at the table for Lyra would be like saying there isn’t a place for her in the family. That is absolutely NOT true. So, she sits with us and holds court while we all eat.  We have done this with her since she was able to sit safely in a high chair.  And, we think it’s helping her learn about food and eating orally.  Even if Lyra doesn’t feel hunger, she clearly enjoys some foods and will take a few bites with us at dinner. While she is still only willing to eat once a day, and only small amounts, it’s a start. More importantly, she clearly feels like she belongs with the rest of us. She is part of the (mostly) controlled chaos that is our family.

Recently there has been a little hiccup in having her at the table.  Lyra’s chair is getting too small for her.  No big deal, right?  Just put her in a booster.  That’s what you would do with an average child. But, Lyra isn’t an average child. Remember? She can’t safely sit in a booster seat. So, what do we do? Does she lose her place at the table?

This is a problem that many families with special needs children face.  There are adaptive chairs, but they are (unsurprisingly) expensive.  I swear, there is an extra unofficial tax that special needs families pay for everything.  Medical care costs more, therapy, schooling, gas for your car (either extra driving or you need a bigger/special car), car seats, bathing equipment, etc. The list goes on and on.  But a seat at the table?  Should our children really be banned from joining such key time because there is no safe place for them to sit?  Should families be forced to exclude their children from the table because they can’t afford one of these specialized chairs?

NO!

Luckily, I am not the only the one that feels this way.  Our lovely feeding therapist let us know about an organization called Charlotte’s Day.  This organization provides specialized chairs for children with feeding challenges free of charge.  While they describe the advantages of these chairs for children like Lyra, the one thing the organization forgets to mention is what those chairs symbolize.  They are a seat at the table.  These chairs are safe place for these children to engage with those around them during one of most important bonding experiences people engage in.  Sure, the chairs also help with posture and reduce fatigue to allow kids to focus on eating, but they do so much more then that.  These chairs reenforce the idea that these children belong.  They are loved, wanted, and accepted.

So, thank you.  Thank you for giving my child a place at the table.

It’s impossible to get a toddler to look anywhere they don’t want to.

Dear Mr. Bromley

Dear Mr. Bromley

Recently I have been reflecting on people who have had a large impact on my life.  I have been thinking about the people who have taught me life lessons, or have given me information/skills that have prepared me for the life I live now.  I have been trying to reach out to some of these people to let them know.  Below is a letter I sent to my biology teacher from middle and high school (I went to a small school, so I took more than one class from him). I never took another science class after leaving high school, but the information this person taught me stuck, and prepared me for life with Lyra.  So next time your child/student complains, “I’m never going to use this information later in life.”  You can tell them, “You’ll never know what you will need.”

~~~~~~~~~~

Dear Mr. Bromley,

You probably don’t remember me. I graduated all the way back in 2003. Since we received my daughter’s diagnosis, I have written this letter in my head a hundred times, but I have never put it out there for you to read it. You have no idea what a profound, positive impact you made on my life. And you have no idea how your biology classes have comforted me over the past two and a half years. Let me explain:

As a junior in high school, I remember sitting in your 2001-2002 AP Biology class in under the red tail hawk. At the time we were learning about the reproductive system and touching a bit on genetics. You were trying to impress upon us how complicated the whole process of meiosis and mitosis really is. You began discussing the topic of chrome disorders and how many chromosome abnormalities simply aren’t compatible with life. You spoke of a former student who called you after losing a child soon after birth due to one of those disorders.

As a teenager I was profoundly impacted by this lesson and this story, even if I believed it wouldn’t happen to me. It would always be that I knew someone, who knew someone that experienced this.

Fast forward to June 2015, on the 7th floor of Children’s National Hospital in Washington D.C. The room had a beautiful view of the city and weather was alternating between sunshine and thunderstorms. We waited for a team of doctors to come talk to us about our daughter’s genetic test results. At only six weeks old she was on her third hospital stay. We had almost lost her once and she was recovering from emergency surgery on her airway. No one knew why she was struggling so much. In my head, I was reviewing that lesson from 2001. I understood how complicated everything was. I just wanted to keep my baby.

As the team of doctors came in the room, and the geneticist began talking, I knew it wasn’t good. But strangely, I found comfort in your AP biology lesson from so many years before. I knew what chromosomes were and what they looked like. I understood what a trisomy and a deletion were. I also understood how something like this could happen. How complicated meiosis was. How it wasn’t really my fault that my daughter was born with both a trisomy and a deletion. It didn’t make the doctor’s words any easier to hear, but at least I felt like we were speaking the same language. Thanks to you.

So here is another story for class. Below is a picture of Lyra Jane. She is the first documented case to have both a p9 trisomy and a p16 deletion. She will turn 3 in May and continues to surprise her care team (I think we are at 8 doctors and 3 therapists). While she is very developmentally delayed, she is a happy and social kiddo who loves her family very much (even if she can’t say it). We still have no idea how long we get to keep her, but we are enjoying every day with her.

Thank you for you lessons and for giving me tools to better understand what was going on while I was so scared. Thank you for preparing me for a part of life I never saw coming.

Thank you,

Jaime

Lyra climbed into her water table while I was planting

 

*This letter was sent to my teacher before it was posted to my blog.  I wanted to give him a chance to read it and respond before letting the rest of the world read it.*

5 things we wish people knew about feeding tubes

5 things we wish people knew about feeding tubes

Recently the Feeding Tube Awareness Foundation asked people on Facebook, “What do you wish the general population knew about feeding tubes.”  Immediately I had a million things go through my mind, but I held back, waited, and watched what other people had to say.  The number of responses were almost overwhelming, and generally very positive.  I resonated with all of them.  So, I wanted to share, in summary, what “we” wish you all knew about feeding tubes.  I hope that this maybe changes some people’s minds, and that they will in turn, share what they have learned to others:

People with tubes live a good life BECAUSE of the tubes, not in spite of them:

Feeding tubes don’t hold people back.  They give those who need them a much better quality of life.  These miracles of modern medicine give people the ability to live, work, run, jump, swim, laugh, love, etc. These tubes are a sign of life and not reserved for the old, infirm, or dying. Without her tube, Lyra simply wouldn’t be here.  Not that long ago, she simply would not have survived.  Because of her tube she crawls all over the place and gets into everything.  She plays with her cousins, swings at the park, swims with her grandma, and throws balls with her grandpa.  Because of her tube she laughs at her Elmo movies, chases after Daddy, and gives Mama kisses.  Lyra’s tube GIVES her a wonderful life.  It doesn’t hold her back from one.

Feeding tubes help people who need them do something their body just isn’t good at:

If you can’t see well, you wear glasses.  If you can’t hear well, you might have a hearing aid.  If you can’t walk/can’t walk well, you use a cane, crutches, walker, or a wheelchair.  Sometimes you need these assistive devices all of the time, sometimes you need them in certain situations.  While there are hundreds of reasons why a person needs a feeding tube, it serves the same function as those devices listed above.  It helps a person’s GI tract do something that it is not naturally good at.  So please, don’t stare or make rude remarks.  I don’t tell you that you should only feed your child at home, so please don’t ask me to feed my child that way.  Please don’t tell me to feed her in a bathroom or out of the general public eye.  A tube is not gross and it is nothing to be ashamed of.

This is NOT the “easy” way and I am NOT a lazy parent:

While I am so grateful for Lyra’s tube, please understand that this is NOT the easy way out.  It would have been much easier to breast/bottle feed.  I’d be happy to throw some goldfish at her, or to have her eat something I made.  It would be great to not have to have a 20 page manual on how to feed her, or an extensive spreadsheet tracking every calorie I put into her body.  I’d love to not have to manage the delivery, storage, cleaning, and tracking of medical supplies.  It would be AMAZING to get out of the house for a day/weekend/small vacation without feeling like we have to pack up half of the house.

I am also not a lazy parent.  When she was an infant I didn’t simply hook her up to her feed, walk away, and go about my day.  Just like any parent who bottle/breastfeeds, I held her and rocked her.  For awhile, I spent at least 1/3 of my day (probably closer to 1/2) holding her and rocking her. Trust me, there was plenty of bonding time.  Also, if anyone thinks that preparing tube feeds is easier than making your toddler a meal is welcome to join me for my morning chaos that starts at 6am.  Seriously, I am happy to have an extra set of hands! However, coffee will not be served before 7am because you have to wait until I have time to turn on the pot.  Too early?  No problem.  Come join me for the afternoon feeding chaos that starts around 2:30pm.  Again, I am happy to have another set of hands.  Also, do you need a spreadsheet to accurately track how many calories your child is getting? No?  Well, if you do, I have become very good at creating them.

We don’t know when the tube is coming out, and that is okay:

The hardest, and most frequently asked question I get is, “when can you take the tube out?”  The question comes in many forms, by well intentioned and kind people.  It’s still the question I hate answering the most, and I am definitely not alone.  The simple answer is: We don’t know.  We don’t know if Lyra will ever eat or drink enough by mouth.  We don’t know if she will be able to take all of her medication orally either.  We don’t know if her stomach will ever do a better job of emptying.  We just don’t know.  People have tubes because they need them, not for fun or because they are just picky.  There is no easy answer for when a tube will be removed because there is no solution for the reasons why people have tubes.  Force feeding or waiting until they get hungry enough, are not viable options. Most of the time when I get this question I just smile and shrug.  It hurts when I see people look sad at my response.  It’s okay if Lyra always needs this tube.  It really is.  The alternative is unbearable.

We are so grateful for feeding tubes:

This goes back to my first point, and comments I have made along the way.  Everyone I know who has a child with a feeding tube, or who has one themselves, has quite a story about how they got one.  No one has ever said, “oh, during our birthing class when they were talking about bottle and breast feeding, we just decided it would be much easier to put in a tube.”  Most of us have watched our children almost die at least once.  We have all spent countless hours in hospital rooms, doctor’s offices, and testing facilities. These tubes keep people alive, healthy, and here.  Every. Single. Day.  I thank my lucky stars that doctors, researchers, and engineers took the time to create these things.  I am so blessed that Lyra was born at a time when they are available.  I am just so grateful to have her here.

So, there you go.  There are the five general things I (and many others) wish the general public knew about feeding tubes. I hope this helps, and I really hope people pass this along to their own networks.  Below are some additional resources that I have found helpful.