Something wrong, or an opportunity?

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Recently I spoke to my niece’s classmates at Watershed School 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.”

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Good Enough

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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

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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.

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The little “normal” moments

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For my husband and I, we truly treasure the little “normal” moments we get to have with Lyra.  There are many things we sometimes feel we have missed out on.  We are yet to hear a true first word, see her point at an object, or watch her take her first independent (and controlled) steps.  There are also little bonding moments we feel like we missed out on.  Things like little naps together have never really been part of our lives for a whole host of reasons.  But every now and then, we get a little window into the world of an average parent, and we just treasure those moments.  They stick with us and we think back on them for days/weeks/months.  One of those little moments happened the other night… morning is more accurate.

About 4:30 in the morning Lyra woke up crying.  While it isn’t unusual for her to be up at that hour, the crying was abnormal.  So, I went in to check on her and she was definity having trouble calming down.  So, I disconnected her from her pump (her feed had finished an hour earlier, so it was safe to do so), changed her diaper, disconnected her extension, closed her button, and brought her into bed with us.  And….. she actually fell asleep…. Now, I may have only had a few inches on bed to sleep on, but I was actually given a chance to curl around my baby girl in bed.

For many parents, little bits of co-sleeping like this are common and sometimes annoying.  For us? We can count the number of times Lyra has slept in bed with us in the last 2.5 years, even for a short period of time, on one hand.  There are a myriad of reasons for this:

  • In the hospital it isn’t safe to co-sleep
  • She typically just kicks us and doesn’t sleep
  • She creepily stares at me while I try to sleep
  • She is connected to a machine or a monitor and it’s too easy for us all to get tangled in the chords causing alarms or feeding the bed
  • She vomits…. all the time…. still

But conditions were just right the other night.  She must have had a bad dream (hence the crying) and was still sleepy. She wasn’t connected to a feed, so the chance of her vomiting was much smaller, and we didn’t have to worry about getting tangled in the tubing.  In the end, all three of us fell back asleep for about another hour before we had to get up.

It was sweet, and normal, and wonderful.  It was one of those little moments that I often crave and rarely get. My husband and I greedily hoard those moments in our memories. I know that it is something so normal, but for us the “normal” moments are incredibly rare.

Why I share so much about Lyra

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Recently, I have noticed an increase in the discussion about sharing your children’s lives online. Especially the lives of our very little ones. The ethical debate involving the privacy of the child has come up more than once. I also know many people who are just more private about their personal lives. It got me thinking. Are people judging how much I post about Lyra online? I know that I post a lot, and I am unapologetic about it. It has gotten to the point where she has been recognized in the the grocery store by people who know my family members. Given, my family is fairly large and lives in a relatively small community, but it was a little eye opening. While it did make me think about how much I share about my daughter and our lives, it also made me want to explain why I share so much. 

1. A large portion of my family lives in other states:

When Lyra was born my husband and I lived in the Washington D.C. area. No one lived very close to us, and the initial purpose of the blog was just to let everyone know what was going on. As many of my close friends will tell you, I was basically silent about the struggles we were having for the first month of Lyra’s life. After her birth, we couldn’t post “mama and baby are doing great”, because “baby” wasn’t doing very well at all. I tried to be happy and share some moments on Facebook, but I was terrified. Eventually, I felt like I couldn’t keep things a secret anymore and I decided to let friends and family know the truth. I also didn’t want to send out giant group emails or text messages. So, this blog was created. 

2. It’s a place to share information:

Having a child like Lyra has opened my eyes to a whole world that I never knew existed. It is a scary world to be thrown into with a whole new vocabulary that I have had to learn. It also can be a very beautiful place, and I want to share both of things with people. I want to teach people what I have learned, and how to talk about it. Maybe if I teach them, they won’t be so scared if it happens to them or someone they love. I also want to share how beautiful and freeing it can be. While there are plenty of things I worry about with Lyra, there are also things I have let go of. While I was pregnant I worried about…. everything. Things like, “I hope she picks a good major in college” actually popped in my head. I worried about how she would compare to her peers. After all, we all hope to have a child that is exceptional at something. Having a child like Lyra means that I get to let all of that go. Instead, we focus on what she can do, not what she might do. There is a beauty in that.  

3. Sharing Lyra and her story is a way to connect:

I am just going to be blunt. This life is very isolating. None of my friends or family members have ever experienced what we have gone through. I don’t have anyone to talk to who really knows what it is like to be in my shoes. Don’t get me wrong, I have an incredibly supportive family who has really been there for us, but they haven’t been through it the way my husband and I have. I also have lost a number of friends since having Lyra. I don’t know if it the fact that they don’t know how to react to Lyra being special needs, or it simply puts them off, or they think that I can’t be supportive of them because I have so much on my plate. The friends who have stuck around know that I have shared in their joys and listened to their struggles, even from a hospital room.  

While no one in my immediate circle knows what the rollercoaster has been like, there are people around the world who have shared bits and pieces of what I have been through. By writing thing blog, I have been able to connect with them. And who know, maybe one day there will be another child with the same diagnosis and that parent might find my blog. And they might not feel so alone. 

4. She will always be here:

One thing I don’t like to talk about, or even really think about, is the fact that we don’t know how long we get to keep Lyra. While she is doing incredibly well right now, there is no doubt that she is medically compromised. Also, there is literally NO information about life expectancy for people with her genetic diagnosis because she is the first care. To be honest, while I have written these posts with rose colored glasses, the simple truth is that she was really in trouble a number of times during her first year of life. Since I don’t know how long I get to keep her, I want to share her. I want to share her joys and her accomplishments. I want their to be a very public record of this beautiful little spirit who has enriched my life and helped me grow so much as a person. I want to spread the lessons she has taught me about self worth and personal strength. I want to people to see her laughter that is completely contagious. The more I share her, the longer she will be around. My beautiful baby bug who makes everyone involved in her care feel like their lives are a little richer and brighter. 

So, this is why I post so much about Lyra and why I write this blog. While I 100% understand (and support) why many choose not to, I hope they understand why I do.  
Even teenage boys aren’t “too cool” for Lyra.

Sometimes, it’s just hard

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For the most part, Lyra is super fun right now. She has a huge personality and recently has become mischievous and very curious about the places on the other side of the gate (aka the kitchen and the dog food). She crawls everywhere and climbs on anything she can. She giggles, claps and is generally a happy kiddo. She also seems to be gaining weight like a champ – something that has been a constant battle for us. While I am truly enjoying the leaps that she is making… somethings are just hard. 

The other day I was working out at my local gym and saw a crowd of kids about Lyra’s age eagerly waiting for their “tumbling” class to start. It made me sad that Lyra doesn’t get to do things like that. Having her in a class with a bunch of toddlers climbing on things would be dangerous. She would be underfoot since she doesn’t walk. Plus, there is the added obstacle of her tube. She is connected to a feed most of the day, and she is still too small to wear a backpack with her pump in it. That means I am chasing her with the backpack and there is a line of tubing between us (perfect trip chord for an unsuspecting toddler). Before you say, “just disconnect her for class.” Please understand that it isn’t that easy. She gets her feeds at specific times with a specific duration for a reason. It has taken us about 2 years of trial and error to find a schedule that gives her the best chance at keeping food down. Even if we do find a way, down the road, for her to do some sort of class like that, it won’t be with her peers. It will be with children much much younger than her. 

It just… made me sad. I want that for her. I want the social interaction, the independence, and the excitement I saw in the other kids. I want that for her so badly. It’s hard.

Another reminder of how different Lyra is, and her limitations, came a few weeks ago. I was trying to think of places to go with Lyra when the weather isn’t great for playing outside. I thought of a local butterfly pavilion and how much my niece loved it at her age. Then I realized, Lyra wouldn’t be able to see the butterflies. Now, her vision isn’t terrible, and right now glasses would be more of a hinderance than a help. But she wouldn’t see the butterflies… or a plane in the sky… or an animal at the zoo. To her, the animals are just fuzzy blobs that sometimes move. Nothing more. 

I want to see the excitement on her face when an elephant walks by, or a monkey jumps from tree limb to tree limb. I want to see her reach of a butterfly, hoping to touch the colorful wings. Or have to point to one of the hot air balloons that fly out by house. But she is different. She doesn’t see those things. 

Lastly, it is back to school time. While Lyra is still not old enough to be in school, the thought of her being in school terrifies me. I am not worried about missing her (I will), and do not feel an overwhelming need to spend more time with her (mommy needs a break). I worry that, while at school, she will not be taken care of. Over protective? Maybe. But I hear over and over again from special needs parents about how hard it is to get schools to provide kids with the care they need. Hearing the parents talk makes school sound like a battle where you can’t trust who is on your side. And the “guidelines” I see for incorporating your child’s feeding requirements (particularly for tube fed kids like Lyra) are HORRIFYING. For example “make sure it is in your IEP that it is NOT acceptable to simply turn off your child’s pump and not feed them all day.” 

Not

Feed

Them

ALL

DAY

Are you f%#$ing kidding me!!! Obviously this happens enough that the well respected organization I follow on Facebook needed to point out you have to tell the school this. Can you imagine if an average child was withheld food and water all day at school because it was “too hard” to feed them?!? 

So I am scared, and that makes me sad. I think of playing at recess, going to art class, singing songs, story time, making friends, and all of those other wonderful things I did at school. I also think of all the things I could do BY MYSELF while she is at school: grocery shopping, laundry, cooking, or (heaven forbid) consistently going to the gym. OH or maybe getting a part time job (I actually miss having an office job). But I don’t know if I can trust the people I am supposed to hand her over to. From the stories I have heard, I may have good reason not to trust them. 

So, sometimes it’s just hard. I wish she could experience things with her peers. I wish she could experience more of the world around her. And I wish I could send her to do normal kid things without fearing her basic needs wouldn’t be met. It’s just… hard.

But her smile does make it a little easier. 

Did I make the right decision?

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I think all parents look back at choices they have made regarding their children and ask themselves, “did I make the right decision?” It can be little day to day things, or big life changing things. I believe we question it all, especially when there are unintended consequences. 

For my husband and I, we are frequently making medical decisions. While we do this along with an extensive care team of experts, the final decision is in our hands. Sometimes it’s a no brainer: If we don’t do this, she will die. I am traumatized by the dozens upon dozens of times I have had to hold her down for an IV to be placed while she screamed and cried in fear and pain. Do I regret any of those IV’s? Absolutely not. But it sucked and I did my best not to cry right along with her. 

Sometimes our decisions are more elective. The “this MIGHT help her” decisions. In many ways these are the harder ones to make. When things don’t go well (don’t get me started on probiotics and Lyra) there can be an overwhelming feeling of guilt. We didn’t have to put her through whatever the consequences were. I can’t tell you how many medications and supliments we have tried (again in coordination with her care team) that have either not helped, or have made things worse. 

The most recent decision we made was to have her adenoids removed. Why we decided to remove them is between us and her doctors, but suffice to say it wasn’t a life-or-death situation. Needless to say, things didn’t go as planned. The surgery went smoothly and we were even able to go home the same day (a HUGE deal). She did great for the first 2 days… then the shit hit the fan. It’s now a week and a half post op and she is still struggling. She is having trouble tolerating feeds, not sleeping well, and is generally miserable. For awhile she was also running a low level fever, but that at least is gone. On top of the surgery, she had two new teeth rupture AND it appears she caught a cold like virus. I feel like all she does is whine and cry. My poor baby is miserable and spends hours curled in my lap watching Disney movies. Normally she won’t sit still. I swear the only time she is happy is swimming in Grandpa’s pool. 

The worst part is, she didn’t HAVE to have the surgery. We could have waited longer. We chose to do it in an attempt to relieve some symptoms where we had exhausted all non-surgical options. Were they life threatening? No. Did they greatly impact her quality of life? Yes. So, we wanted to make it better. Having her adenoids removed was our last option. 

Will it help?

I sure as hell hope so, because the level of guilt I am feeling right now is almost overwhelming . As I rock my baby to sleep, hooked up to a pedialyte drip because she threw up so much today, I pray to whatever god may (or may not) be out there that I made the right choice.  I hope that in the long run this will make her life better. Poor kiddo. This was supposed to be the easy surgery. 


Before surgery 

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