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.

_________________________

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.

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.

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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.

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

 

*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.*

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.

• Feeding Tube Awareness Foundation: Navigating Life
• Types of Feeding Tubes
• The Oley Foundation

 

The past year has been one of reflection for me.  I often think about where we were a year ago, two years ago, three years ago, etc. A year ago we were celebrating a holiday season without hospitalizations. Two years ago we had just gotten out of the hospital and we were scheduling a whole batch of procedures (which landed us in the hospital for a few days). Three years ago we had the first inklings that something might be up with the baby I was carrying, and I was getting ready to undergo a whole battery of tests (after which they told me everything was fine).

While reflecting on the journey our family has been on is useful and healing, it’s not the whole picture for me.  I have also been reflecting on how I have changed as a person.  I often think about how parenthood has changed me, and how being a parent to a special needs child has truly altered my perspectives on many things.

I am less judgemental of other parents

Before becoming a parent, my list of “I would never do that” was LONG.  I had strong views on how to feed kids, how to handle sleep, and how to deal with other behavioral issues.  Yes, yes, chuckle now. I find it funny too.  At times, when I have been frustrated beyond reason with Lyra, I have thought, “karma’s a bitch.” I have spent unreasonable amounts of money on food because she seemed to like them one time, only to have her never eat it again.  While I was (still kind of am) a believer in the “cry it out” method for sleep training… I still rock Lyra to sleep.  I am much more willing to recognize that sometimes you have to meet your child where they are.  Sometimes sticking to a certain method will do more harm than good for a certain child.

Luckily we haven’t had too many challenges when it comes to behaviour, but I have met so many parents where that is their primary obstacle.  These are good, well meaning, hard working, loving, tough, parents.  They do everything they can to prevent meltdowns, temper tantrums, screaming fits, and other outbursts in public. They have worked with professionals and they are doing their best.  Sometimes the parents might not be at their best in that exact moment, but no one is perfect every minute of the day.  Before Lyra, I would have judged the parents when a child is acting out.  Now, I see the fear (of judgement), exasperation, frustration, and sadness in their eyes.  I feel compassion for them now.  Sometimes, you have to go to the grocery store, and you have to bring your child. They can’t live in a bubble.  Everyone has to leave the house.  I just want to give them a hug.

I’m tougher

Before having Lyra I was a bit of a pushover and often called a drama queen.  On day 10 of Lyra’s life, I learned how to push back.  Watching your newborn turn blue because no one would listen to you will do that. I learned the difference between being a drama queen and being an advocate.  I also learned that, when my life was truly in crisis, I was able to calmly and rationally make very tough decisions very quickly. Sure, I fell apart from time to time.  All of my close friends and family members have received tearful phone calls at some point.  But, when it mattered, I was calm.  I knew that freaking out and melting down wouldn’t help anyone, especially my daughter.

I am less tolerant

Now, I am not sure this is a positive quality, but it’s an honest assessment.  I often say that, since having Lyra, I need people either step up, or step out.  I’m okay with whatever people have decided, but I don’t have time to deal with their struggles with my child being special needs. While I have always had little patience with incompetence, I now have zero patience for it. If you can’t do your job, or if you can’t help me, I need to move on to someone who can.  I also don’t have time for friendships that take a lot of work.  I happy make time for those who make time for me, even if it is just a simple text.  However, if you don’t have time, that’s fine.  I feel little loss for the people who have drifted away since having my daughter.  For those who have embraced us and our journey, your presence in our lives has made it so much richer and we are so grateful.

I also don’t have time for people who don’t try to understand Lyra and the journey that we are on.  Anyone who reads this blog, or knows me, understands that I try to educate and explain things all of the time.  I am open to questions and I happily answer them.  However, when people don’t take the time to listen to my explanations, or simply refuse to except that Lyra will never be an average kid…. ain’t nobody got time for that.  If you can’t enjoy her for who she is, if you can’t get over the fact that she is mentally and physically disabled, if you can’t except that no leap of science will ever “fix” her… I don’t have time or energy for you.  I just don’t.

I have learned where to look for joy

My whole life I felt a little unsettled.  I was always looking for a time or place where I felt, “this is perfect and I am truly happy.”  I didn’t always know where to look for joy in my life.  This is probably part of the reason why I moved so frequently.  I always thought somewhere else might be better.  However, I have learned that joy is a little spark that flares brightly, like a firefly.  That little moment stands out the most and, if you focus on it, it will be the thing you carry with you the longest.  But, if you aren’t looking for it, you’ll miss it.  It will fly right past you.  Lyra’s first year was really tough, but if you ask me what I remember most about that year, the negative things aren’t what I will state first.  The little moments of joy and laughter are what always stand out to me.  It’s Lyra trying to nurse on Mark’s nose, her snuggled up with her grandma, or the look on her aunt’s face the first time she visited.  It’s laughing with family over a beer they snuck into the hospital room, or watching Lyra run around the halls of the 8th floor in her new walker.  Even though life was harder than it has ever been, I remember so many little moments of joy.  While this life is far from the one I envisioned as a parent, it’s a good life.

I am learning to embrace who I am physically

I have never been all that comfortable in my own skin.  I always wanted to be thinner, taller, prettier…. mostly thinner.  I have spent DECADES basically hating myself when I looked in the mirror, or looking at pictures of myself.  Since having my second shoulder reconstruction at age 23, I have honestly been in a bit of a downward spiral.  That spiral turned into a bit of a free fall when I blew out my ACL, had surgery, got pregnant half way through rehabing it, wasn’t able to work out much during pregnancy, and then basically spent a year eating hopital and fast food.  Between sleep deprivation, doctor’s appointments, therapy appointments, and just managing Lyra’s care; consistency in working out has been a struggle.

Finally, I got to the point about 6 months ago where I just decided that I didn’t have the energy to hate myself anymore.  I am very overweight.  I basically weigh as much now as I did the day before I gave birth.  I don’t like it, but I accept it.  I also don’t think less of myself as a person by the size of pants I put on every morning.  Believe it or not, it’s much easier to motivate yourself to workout when you treat the workout as a reward (free time to myself!) vs. a punishment for eating something “bad”.  It’s also easier to eat healthier when you pick something because it makes your body feel food, but you also don’t give yourself a guilt trip for having the occasional indulgence.

Am I perfect at this?  HELL NO.  Like I said, I am trying to undo DECADES of negative thinking about myself.  There are still very few recent pictures of me that I allow on social media. But this shift in how I view/value myself is import for me, my daughter, and even my nieces.  The last thing that I want is for any of them to look in the mirror, and  make a value judgement about their worth as a person based on their reflection.  I don’t want Lyra to ever be ashamed of her feeding tube button or her surgery scars.  Those things saved her life and made her strong.  They are not “something wrong”, they gave her an opportunity.

I knew becoming a parent would change me.  I had no idea how dramatic that change would be.  Have all of the changes been positive?  Maybe not.  But I feel that the positive changes far outweigh the negative ones.  Parenthood is a long road and an epic journey for all of us, and I don’t think it ever goes to plan. But it’s worth it.

Me, in bed, as soon as I finished writing this point.

Recently I spoke to my niece’s classmates about Lyra, and what it is like raising a medically complex child with special needs.  This group of 14-16 year olds are discussing what it means to be human this semester, and did a small section on genetics and chromosome disorders.  It was a perfect opportunity for me to speak to the students, and I am so grateful the school let me come in with my daughter.  I gave them the rundown on Lyra’s genetic disorders, her long list of medical conditions, and spoke about what life has been the past two and a half years.  I gave them the short version because I wanted to give them enough time to ask me whatever they wanted to.  The second question I was asked rocked me… and still is rocking me.

A student asked: “You said that when you were pregnant, you ‘didn’t know anything was wrong’.  Now that Lyra is here, do you see her as ‘something wrong’ or as an opportunity?”

I know I gave an answer, but I am sure it wasn’t a very good one.  Almost two weeks later I am still processing this question and its’ implications.  I have my knee jerk reaction to it, but is that the whole truth? Is Lyra inherently “something wrong”? Or, is she an opportunity? Here is my second (and more thought out) response to that question:

Is Lyra something that is “wrong”? – No.  Are there things that are wrong with Lyra? – Yes. I do not hold back about the fact that having a medically complex child is really hard.  It is emotionally, mentally, and physically draining. I am her doctor, nurse, physical therapist, occupational therapist, speech therapist, case worker, and mother all at once and all of the time.  Things are wrong with her, there is no denying that.  However, that does NOT mean that she is somehow inherently “wrong”.  As I have stated in other posts, her medical conditions don’t define all of who she is.  Yes, they are part of her, but they are a small part.

Is Lyra and opportunity? – Yes and no.  Let me explain the “no” part first.  Lyra does provide the opportunity for others to learn about genetic disorders, disabilities, and medically complex people.  However, that does not mean that she is simply a “teaching tool” to be placed on display, or a lesson to scare others about what can go wrong.  That being said, Lyra has given us the opportunity to expand our lives and critically evaluate what is truly important.  By “us” I mean everyone who comes in regular contact with her.  Little milestones that would have simply passed us a by without much notice have become major celebrations.  Every day with her is a little more valuable because we are so grateful she is still here.  She seems to touch everyone around her, and helps them look at what is really important.  As my niece said to her mom (my sister) one day, “our lives are better because of Lyra.”  As her parent, my life may not be easier, but it is better.  I believe that I am a more patient, understanding, and empathetic person because of my daughter.  It isn’t just things I have experienced directly with her either.  Because of her I have sought out other special needs families and families with similar medical complications.  Through these other families I have learned so much about kindness, community, family, friendship, grief, loss, strength, and joy.  Lyra has been an opportunity for others to learn about these things as well.

While this is not the life I would have chosen, I wouldn’t change who Lyra is now.

To the young man who asked me the question, I hope this is a better answer.  Also, thank you for asking it.  I often say, “words have power, so choose wisely.”  Your questions reminded me to be careful about how I present my story.  So, let me rephrase:  “When I was pregnant, we didn’t know that the baby (Lyra) had two genetic disorders or other medical complications.”  There, that is much better than me saying, “we didn’t know anything was wrong.”

Before I had Lyra I totally knew there would be days where I would have to say, “it was good enough.”  I knew sometimes I would miss bedtime, my child would eat highly processed food for dinner, or they would simply skip dinner and go straight for the sweet stuff (after all, they would have half my husband’s genes).  I didn’t plan on having many of those days, but I knew they would be inevitable.

Then I had Lyra, and a day that was only “good enough” became terrifying. Straying from the schedule meant missed calories or fluids that her tiny body desperately needed.  Changing her sleep schedule guaranteed a falling apart child and 2-3 hours of rocking her to sleep. Having a day where she kept down most of her food simply wasn’t good enough.  It wasn’t a very big step from tolerating most of her food to landing in the hospital, dangerously dehydrated, with an IV.  There was no such thing as “good enough”.  I felt like there was perfect, or falling apart.  Nothing in the middle.  It felt like one small thing would send us into the next crisis.  I was a ball of nerves and constantly on high alert.  It was exhausting.

In the last year, I have been slowly relearning what it means to have a day that is “good enough.”  Lyra is strong enough, and stable enough, that she can miss out on 2 oz of extra water one day.  She can have a few days where she is short on calories because her GI system needs a break.  She can have a day where she doesn’t poop (2 days is still concerning, but that is beside the point). There is also a little more wiggle room in her feeding schedule.  One of her feeds can be off by 30-40 minutes, and it isn’t going to throw her whole schedule (and GI system) into chaos.  Yes, even being off by 30-40 minutes used to DRASTICALLY change how she tolerated her tube feedings.

Slowly allowing a small amount of fluctuation in our daily lives may not seem like much to outsiders, but it has been liberating for me.  While I still keep a detailed spreadsheet with her daily calorie intake, I no longer agonize over every little missed (or lost) mL for that day.  If her system is starting to show signs of strain (aka projectile vomit more than twice in 24 hours), I feel comfortable switching her to pedialyte and slowly building up her calories over the next 3-4 days.  I am learning to say, “today was good enough,” and move on.  It’s not always easy.  It’s not done without trace of anxiety, but I am able to do it and be comfortable with the decision. Maybe one day I will be a little more like the parent I had pictured myself as.  For know, I it’s good enough.

 

 

Tonight I held Lyra a little longer than she needed when I rocked her to sleep.  Yes, I still rock my 2.5 year old to sleep.  Even if I didn’t normally, tonight would have been a night that I needed to.  Tonight I was reminded of what a blessing it is to still have her with me.  Sure, she hasn’t taken a nap in two days and has fallen apart at family dinners, but that seemed to matter a whole lot less tonight.  See, today I found that one of the moms in my Facebook groups is in the process of saying goodbye to her son.  While I have never met her in person, I know some of her story.  Her son is medically complex (like Lyra) and she spent every last penny to move him from Texas to Colorado about a year ago.  She had hoped that some of the resources here might finally stabilize him.  Unfortunately, that hasn’t been the case.  So, she is saying goodbye to a little boy she didn’t have to bring into her life.  She adopted him, and gave him every bit of joy and love that she had in her.

It made me think.

Today I was frustrated with Lyra.  I wanted her to nap.  I wanted a break.  Just 45 minutes to myself. I don’t think that is all that unusual for a parent.  However, Lyra had different plans.  She ended up watching Winnie the Pooh on my bed. I was frustrated for a few hours after that non-nap.  But, when I went to put her down for bed tonight, I reflected on the other mom.  The mom who is facing my biggest fear:

What do you do when there are no more options?

How do you say, “goodbye”?

I felt guilty for being so frustrated with my daughter. She is medically so stable right now, and we still have other options to try if things take a turn. I felt guilty for not enjoying her little smile and laugh as she sat in her bed during her “nap”.  I felt like I just needed to hold her a little longer.  And once I put her down, I did something I never do.  I prayed.  Not to a god, but to the universe in general.  I thanked the universe for giving me so many days with her.  I promised to treasure those more often than I do.  I wished for a peaceful night, with a happy baby in the morning.  But it’s okay if we have a rough night too. Because, I get to have another morning with her.  And for that, I am so grateful.