Not an average child 

Standard

As Lyra approaches 2 it’s becoming more obvious that she is not an average child. Most days I forget that Lyra isn’t like all other children her age. Honestly, there are lots of times I don’t think about what other kids her age are doing because it simply isn’t relevant to our lives. However, those days are becoming fewer and I am more frequently hearing, “what’s wrong with her?”

Of course, my knee jerk reaction is to say, “nothing.” While that is true in the sense that she isn’t currently sick, what they are really asking is, “why is she different?”  To be fair, the people who have asked know that they are dancing on the line of a sensitive topic and do so with the best of intentions. They are asking to better understand Lyra, and there is nothing inappropriate with HOW the question was stated. I would rather have people ask than stare or avoid my daughter… But a little part of me still hurts when I hear those words.

The past month or so I have had a number of these moments. Recently I went to the zoo with two long time friends who have little boys about Lyra’s age. These two women are wonderful and never make me feel uncomfortable about Lyra. The moment that was hard was when we found a play area where the kids could run around and get the wiggles out after being in their strollers. I put Lyra on the ground in the play area with her ever present backpack. I had hoped she would get to engage with other kids and maybe crawl around a little. As we watched 10-15 other kids run, laugh, and make momentary friendships, Lyra sat at my feet and just watched. I saw other parents notice the tubing sneaking out the bottom of her pants to her backpack. I saw children look at her, then turn away, not interested in making that fleeting bond kids seem to make when running around a playground. 

She was separate.

She was different.

It was hard.

The backpack, her constant companion, is a visual indication to everyone that she is different. Sure, people are starting to notice she doesn’t walk or talk, but she is small so they frequently assume she is younger and shy. The backpack is a sign that says “something is different here.” 

Soon she will be getting another new accessory. Leg braces. Of course I am not self centered enough to put off getting her something she needs. I even picked out cute ones with lady bugs. But it’s still hard. It’s another thing that will prompt people to ask “what’s wrong with her?” It’s another barrier to her blending with her peers. 

Now, there is a flip side to all of this. There are also times when I am frustrated that people disregard the fact that she is not an average child. I know that it seems contradictory to want her to both blend in with her peers, and have her special needs be acknowledged. However, one is wishing things were different; and the other is living with her reality. The reality is that I don’t have an average child. I have a child who still doesn’t say “mama” or “daddy” (or really communicates). I have a child who doesn’t eat the meals I cook. I have a child who doesn’t walk and will likely need assistance if she does. 

But much of the time I try not to think about that. 

I also have a child that learned how to climb stairs. A child who still thinks peek-a-boo is the best game on earth. And a child who throws herself with reckless abandon at the world (and off the couch) because she knows mama and daddy are always there to catch her. 

Raising a Child with a Rare Condition

Standard

Right now I am in Lyra’s room, rocking her back to sleep, feeling a bit defeated. This is not a night where Lyra won’t settle. She is one tired little kiddo (thank you swimming). No, Lyra was sound asleep and puked all over her bed. This has been part of her life basically all her life and at times it is devastating as her mama. She just looks so sad when she vomits and she frequently has trouble catching her breath afterwards. Despite working with an amazing team of doctors, nurses and other professionals, no one has any answers or solutions. This is part of raising a child with a rare condition.

Tomorrow is Rare Disease Day. While I tend to try to focus more on the positive than the negative with Lyra, I want people to understand what it feels like to raise a child with a rare condition. Don’t get me wrong. My days are filled with love and joy. Lyra and I laugh a lot together, but there is a side I don’t like to talk about.

Raising a child with a rare condition is isolating, frustrating, and terrifying.

Isolation:

I am one of the lucky ones in that I have a lot of family support. It makes a huge difference. However, I often feel isolated. My experience of becoming and being a parent is so vastly different than anyone else I know. When Lyra was born I didn’t have that special moment of her being placed on my chest and sharing a little bonding moment. The nurses did place her on my chest, but it was with the hope that the skin on skin contact would trigger her instinct to breath. I sat there, dazed, as everyone kept saying in tensely calm voices, “breath baby, breath.” Then she was whisked away.  From that point on, hospital life gradually became more normal to me. While a hospital stay has been an understandably stressful and scary experience for other parents I know, for me it has become a norm.  Inconvenient, yes, but as much a part of life as a trip to the pediatrician.

One of the most isolating things, for me, is that none of the information out there applies to her, or our situation. Keep in mind, Lyra is the first documented case to have both 9p trisomy and 16p deletion.  Also, doctors have never seen her neurological abnormalities present the way her have. This means that there is little to no relevant information what to expect, or how to handle any potential complications. It also means that there is no community for us.  There is no support group for parents like me.  There isn’t another child I can introduce Lyra to and definitively say, “you are not alone.” As of right now, we are an island in the rare condition community.

Frustration:

This leads nicely into frustration. We have no answers.  We have no solutions. The best example I have of this is feeding Lyra.  We have come to the realization that Lyra doesn’t feel hungry (likely due to her brain abnormalities). This means that we will be using the tube for a very long time.  Perhaps for her whole life. To be honest, I am okay with that. What I find frustrating is that we can’t find a way to get her to keep food down. She throws up at least once a day for no apparent reason.  We have literally. tried. everything.  Trust me, we have a great team working with us on this. It is so frustrating to me that in 21 months of trying to find a solution, I feel like I am no closer to figuring out what works for her.  It makes me so sad to see her puke.  Her stomach heaves, her eyes bulge, and she sounds so congested afterwards. The worst it when it happens when she is sleeping, like tonight. She gets so sad and upset.  She just wants to sleep.  I get so frustrated that I can’t help her.

I also get frustrated with how long it can take to see progress with her. This is why I celebrate milestones that she does reach with so much enthusiasm. Although we work with occupational therapy, physical therapy, and speech therapy weekly (yes, that is 3 appointments every week), every skill Lyra learns is hard won.  It took until she was almost a year to get her to roll from her back to her stomach. She was at least 18 months old before she crawled. She still just babbles and only signs when she wants to be picked up. And eating…. well…. if she is motivated she will eat a bit.  However, if she isn’t in the mood there is a better chance of it snowing in Hawaii than there is of getting her to eat.

Fear:

This is the piece that I rarely, if ever, talk about.  Death is a more pronounced presence in my community, and I live with the fear of losing Lyra. Most days that feeling is so small that I don’t even notice it, but it is always there.  The simple fact of the matter is that Lyra is compromised. Many of her internal systems did not form quite correctly. What an average person would likely recover from, she may not.  Also, since she is the first documented case of someone with both her genetic disorders, there could be complications down the road that we can’t anticipate.  My biggest fear is that I don’t know how long I get to keep her. I want to keep my loving and joyful little girl forever, but that may simply not be in the cards.  When I have asked doctors about it, they get very quiet.  They simply don’t know what to anticipate and they cannot tell me that everything will be okay.  So the fear is always there, normally hiding in a little corner.

_________________________________________

Now, is this a complete picture of what it’s like to raise a child with a rare condition? Obviously not.  Anyone who knows me, or is linked to me on social media, knows that this is not the whole picture of our lives. But it is an important part, and a part that many aren’t comfortable sharing.

 

We Do (almost) Everything You Do

Standard

A comment I frequently see from parents facing the possibility of a feeding tube, or moving to a continuous feed, is “My life is over.”  I promise, it’s not over.  It will just be different. With a little bit of creativity, life keeps moving.  Lyra does everything another child does, some things she just does a little differently.  There are four things to you need to make this work:

  1. A backpack – We have 2 designed for her pump, one we got at Costco and modified (aka cut a hole in it) and a cute one I still have to modify.
  2. A Mommy Hook… all moms need a Mommy Hook.  They are amazing.
  3. Creative thinking
  4. Sense of humor

Now that we have our supplies, it’s time to go out and live life.

WARNING: Not all of these pictures are recent because it’s really hard to keep up with her from behind a camera lense.

Even hooked up to her feed, Lyra crawls around and plays in the living room:

img_1152

She climbs up the stairs:

img_1167

She goes with me to store and rides in the cart

img_1284

She plays with her cousins

She even swings at home and in the park

She rides in the car and in her wagon

img_1280

She even goes swimming! …. Yes, that is her pump floating behind her in its own raft.

So life is far from over, it just looks a little different.  You just have to get creative about when you go and what you need while you are there.  Sometimes things work.  Sometimes they don’t (there is a reason she has a towel with her in many of the pictures)! But, once you leave the house you discover that there are lots of other people who have been, or are, in the same boat.

 

 

Daily Life with my Tubie

Standard

It’s been awhile since I have written a post like this, but people seem to enjoy the window into our daily life.  I am going to be honest, it’s a little crazy.  A typical week for week for us has at least 3 appointments (OT, PT and Speech Therapy) and a music class.  Add in visits to one of her many doctors, running errands, laundry and cooking… life can be a little nuts.  But the hubby and I make a good team.  So, here is a typical day.  To be honest, no day actually looks exactly like this, but it will give you an idea:

6 am: My alarm goes off.  I made a commitment to myself the night before that I WOULD NOT hit the snooze button, but we all know I am lying to myself.

6:09 am: My alarm goes off again and we get out of bed. Each of us has a set of unspoken tasks. I go straight into the kitchen to make Lyra’s first feed of the day (a small bolus):

1 oz of prune and apple juice+2 oz pedialyte+1 tsp of milk of magnesia= Poop Juice

This lovely mixture is poured into a gravity bag (a feeding bag with a control knob that uses gravity to drip the feed into her tummy) and hang it near her jumper. Meanwhile, Mark works on getting Lyra up and changed. We set her up in the jumper and some Sesame Street and let her feed run for about 20 min.

6:30 ish: Lyra is set up and her feed is running.  Mark goes downstairs to turn on his computer for work and brings up any needed supplies. He then cleans her pump bag from the night before, and I begin to put together her food for the rest of the day.  Mind you, little if anything has been said between the two of us.  We each know what needs to be done and I am very grumpy pre-coffee. We are a well oiled machine at this point. Anyways.  The mixture for the rest of the day is:

5 oz of pedialyte + 1 packet of Real Food Blends (we hate salmon day, but know it’s important)

7:00 am: Lyra (still in the jumper) is hooked up to her pump for the next 7 hours for her regular feed.  She can’t tolerate anything with a reasonable amount calories very quickly. At this point I wash her gravity bag and any other supplies in the sink from the night before.  Mark is busy downstairs working.  I also check her bedding for any spit-up or leaks (sometimes stomach juices leak out from around her button overnight) and change whatever needs to be changed. This is also the time I may (more likely not) start a load of laundry.

7:30 am: Lyra comes out of the jumper for diaper and clothing change.  At this point she normally has her second diaper that is about half her body weight, so she needs a change. Then it is PLAY TIME.  Recently I like to take her to the bottom of the stairs to “visit Daddy” and then I make her crawl all of the way up.  If I am really organized (cough cough), I grab some of her laundry and take it up with us.

8:00-9:30ish: If I haven’t managed to get coffee and a few bites of breakfast in, now is when I do that.  At some point she goes into her play pen while I get myself together a little bit.  For those of you who see me every day, you know that I don’t take long doing this.  I also use some of this play time to answer emails, pay bills, or start something in the crockpot for dinner.

9:30 am: If we are not already out doing something by this time, we better be heading out soon! Lyra needs activities and stimulation.  Sometimes this means we are at her music class or heading over to Grandpa’s to do physical therapy. Other days we are on our way to Costco/Target/King Soopers etc. Sometimes we stay home, but I try to keep things active.

Sometime between 11 and 12: Lyra crashes.  The world has become an unfair place.  Mommy must hold her all the time. Books and toys are evil…. it must be…. NAP TIME!!! I love nap time.  I look forward to it every day.  On good days, I take a little nap too.  Today, I am writing this blog instead.  However, many is the day that I grab a quick bite of finger food and then climb into my own bed.  I can’t do dishes because it wakes her up.  I can’t do laundry because it wakes her up, so I mine as well take a nap!

2 pm: Lyra’s feed finishes and she normally wakes up.  Suddenly the world is a happy place again and my little one is all smiles and spice.  Once she is up WE GO SWIMMING!!!  I have introduced this new activity because it is too cold to play outside and she needs to, once again, get out of the house.  She only lasts about 10 minutes in the water, but it is still worth it.

3 pm: We are (usually) back home and Mark is (usually) done with work. We have family play time (aka, mommy hands off the baby and gets other stuff done…. alone….).

4 pm: We attempt to get Lyra to eat.  This normally involves getting out at least two types of puree (some pre made, some homemade), something crunchy, 2-3 different types of utensils, a cup of water/juice, bib, paper towel, and a dish towel.  Lyra will last for about 10-15 minutes, take about 2-3 bites of everything, then do her best to send food flying all over herself and the floor. Some days she is better, but recently her oral aversion has been really bad and she shows no interest in anything.

5 pm: Mark and I eat dinner.  Yes, I know it is early, but we need the fuel to get us through the rest of the night.

5:20 pm: I start to make her night time bolus.  This is the one she is most likely to throw up as we are using it to try to stretch out her stomach.  The hope is that it will do three things:

  1. Make her stomach big enough so that when it is empty her brain gets the signal that she is hungry.  Right now she doesn’t seem to get that signal.  Even when she hasn’t been fed for 14 hours, she doesn’t show signs of hunger.
  2. Stretches her stomach so that she will hopefully be able to do all bolus feeds and we won’t have to have her hooked up to her pump all day.
  3. Stretch her stomach so the brain gets the trigger to tell her intestines to work harder.  She has trouble with constipation and we think that it is because her system isn’t getting all of the signals a normal GI system would get.

This bolus is made up of:

3 oz homemade bone broth + 1 oz veggie puree + 1/2 oz fruit puree

Making the bone broth takes about 30 hours from start to finish and I can’t buy it commercially.  The commercial stuff has little to no fat and a TON of sodium.  I make it about every other week at this point and freeze it into 1 oz cubes.

5:30 pm: The bolus begins.  Once again, Lyra is placed in her jumper.  This time we put on The Wiggles! I hate the Wiggles, but it keeps her distracted. This time I use a 60 mL syringe and I slowly give her the mixture over 20 mins.  We can’t use the from the morning because the fat and purees would just clog it. I normally listen to Forensic Files on headphones. Meanwhile Mark does dishes from dinner, doses the night time meds, and makes her bag for her overnight feed.

6:15 pm: Lyra’s feed is done, her tummy has rested for 25 minutes and now it is BATH TIME!!!  Most people would assume that I do bath time.  After all, I am the water person.  Nope, Daddy does bath time.  It is one of my favorite things to listen to.  What am I doing? I am getting her room prepared! I get a sleeper from downstairs (laundry has trouble making it back up to our rooms), hang her feeding bag, set the pump with the new volume and rate for her 10 hour overnight feed, turn on her lullabies, turn on her heater (keeps her room at 70 all night), and switch the lighting to the table lamp.

6:30 pm: Lyra comes out of the bath and we put on her diaper (with an extra pad because she pees so much), lotion, and her sleeper. Daddy brushes her hair.  She acts like he is torturing her. We use her tube to give Lyra her nightly medications. Then we “read” her the Going to Bed Book by Sandra Boynton and hook her up to her feeding pump.

7:00 pm: The lights are off and her 10 hour feed has started.  I still rock her to sleep.  Yes, we have been doing sleep training.  We have even been working with the sleep clinic at our local children’s hospital.  This is what works for us right now.

Sometime between 7:30 and 9:30 I get her down in bed and leave the room.  Going swimming helps it be closer to 7:30.  Mark and I spend a little time together on the couch and then crash.  It’s a miracle if I last until 10 pm.  He doesn’t seem to require as much sleep.  At some point in the night we get up at least once to pat Lyra back to sleep. On bad nights she is up anywhere from 3-6 hours, but it just isn’t predictable.

It’s funny, when I look at my day I don’t think I do that much. However, when I write it down it seems overwhelming. For me, it’s just life and a lot more normally happens during the day. However, it is almost 1:30pm and I going to try to catch a quick nap before she wakes up at 2.


Yes… swimming in February in Colorado outdoors. 

Holidays

Standard

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.

8632c6be-da16-4a03-88a3-de5558a65254

Lyra, her uncle ,and her daddy

Fitting In

Standard

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

Standard

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: