How I have changed

How I have changed

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.

My husband’s accomplishment

My husband’s accomplishment

I’ve had horrible writer’s block recently. Although I have had many of ideas of what to write about, I never seem to be able to express myself.  So tonight, I am going to write about my husband. While I don’t often write about him (I try to respect his privacy since this is my project), an event happened almost 2 weeks ago that I feel merits acknowledgement: My husband finally received his black belt in Brazilian Jiu Jitsu.

Why is this a big enough deal that I am writing about it? Well, it has been about 13 years and many schools in the making.  Life has thrown a lot at my husband, and he stuck to a major goal.  He has trained in five states (we have moved a lot), and many schools, all while having other obligations.  Despite having a full schedule, he has stayed with BJJ, unwilling to give up his goals.  He stuck to training while working full time, actively participating in the care his daughter’s medical needs, being a normal dad his daughter, and being my partner.  While I have given you all a run down of my “typical day” in the past, let me give you a run down of his typical Tuesday (he trains Tuesday, Friday, and Saturday):

  • 6 am: WAKE UP!
    • Mark gets Lyra’s feeding bag and pump from her room and brings it down to the kitchen for me.
    • He then goes back upstairs to wake up Lyra, change her, and bring her down for her water feed.
    • He sets her up in her chair, turns on Sesame Street, and administers her medication.
    • THEN he gets ready for work.
  • 7-8 am: Drives to work
  • 8 am – 5 pm: Does work things
  • 6 pm: Gets home, kisses Lyra goodnight, grabs his gear and leaves by 6:15 pm
  • BJJ
  • 8:30 ish…. sometimes 9 pm: Gets home, showers, makes dinner (we fend for ourselves on Tuesdays), and cleans Lyra’s supplies from that day.  He also does other household chores that I may need help with.

He normally doesn’t get to bed until about 11pm, and it starts over again at 6am the next day.

He is also 100% my partner. While I do almost all of the cooking, he always does the dishes.  He takes care of laundry, maintains the kitchen, and helps with whatever chores need to get done.  He attends to his daughter’s medical needs, and also just does the normal daddy stuff.  She loves her daddy.  He is her favorite person to play with. Just as I have, he has slept in hospital chairs, stood by her bedside, spent sleepless nights in emergency rooms, and sleepless nights cleaning up vomit at home.

While managing all of this, and a full time job, he never let go of his goal.

So yes, I am proud enough to write about it.  Yes, I do think it is import enough to be here.  And, yes, I do think there is a lesson to be learned from it.  Good job Mark, we are so proud of you.

Something wrong, or an opportunity?

Something wrong, or an opportunity?

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.”

Good Enough

Good Enough

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

Tonight

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

The little “normal” moments

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

Why I share so much about Lyra

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

Sometimes, it’s just hard

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?

Did I make the right decision?

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 

Today 

To the new parent of a tubie

To the new parent of a tubie

Dear new parent of a tube fed child,

Welcome to the club we never wanted to be part of.  None of us planned for this, and we all got here different ways. But here we are.  Chances are your road has been long and traumatic.  Chances are you have spent a long time in the hospital surrounded by nurses, doctors, and various other support staff.  Now you are home.  And it’s really scary.  Your are terrified that you will do something wrong.  You are terrified you will make a wrong decision.

It’s okay.

You will make mistakes.

More than once.

We all do.

It will be okay.

I have been the parent of a tubie for almost exactly two years now.  The first year was an emotional rollercoaster, and a stressful cycle of moving into and out of the hospital.  The past year has been much calmer.  We have found a bit of a groove and have been able to stay home.  However, that does not mean I have not made mistakes.  Here is a little sample of some of my shining moments:

  • I have forgotten to clamp her tube causing her stomach contents to drain on me, the rug, the dog, my husband, etc.  It happens at least once a week and I normally catch it quickly.
  • I have “fed the bed”.  Overnight things happen, and you do HAVE to sleep at some point.  I have had the extension disconnect from her button, effectively feeding her pajamas instead of her stomach.  I have a had the bag disconnect from her extension somehow (chances are from her moving in her sleep).  I have also forgotten to remove the cap from the bag before connecting it to the extension, causing the whole thing to disconnect and… feed the bed instead of the child. It happens to the best of us.
  • I have forgotten to start the pump. Nothing is worse than waking up to a full bag of food and realizing your child has missed out on (in Lyra’s case) at least half of her daily calories.  Nothing.
  • I have set her pump incorrectly and given her too much/too little food.
  • I have done something (like look at her wrong) that has caused her to vomit. Everywhere. Again.
  • I have pulled out my daughter’s feeding tube by catching the extension/button/bag on her carseat, highchair, my foot, and the covers of my bed.

I could go on, but you get the idea.  The point is, what you are doing is stressful.  You are in charge of performing a medical task multiple times a day, 7 days a week.  Many times you will be doing this on little to no sleep.  Mistakes happen.  It’s okay.  No one expects you to be perfect.  Cut yourself some slack and just try to move forward.  Move on to the next feed, the next hour, the next minute.  Try to think of ways to make the mistake not happen again… or at least for a awhile.  Here are some of the things that help me:

  • I write down everything feed related.  I have a spreadsheet of what she had each day, and I write basic rate and dose information on a whiteboard to help me remember what to set the pump at.  It’s not perfect, but it helps.  I simply can’t keep all of the numbers in my head.
  • I set alarms.  Especially when I have to add a new medication, I set an alarm on my phone with a note to remind me of why it is going off.  I can’t tell you how many times I have looked at my alarming phone and thought, “what the hell am I supposed to do?”
  • I use a video baby monitor at night so I can check if her tube is still connected without having to physically go in her room.  It’s not foolproof, but it helps and I sleep more soundly.
  • I talk to other parents of tube fed children on Facebook.  We share stories and laugh/cry at our mistakes.  We let each other know that we are not alone and we give advice.

After I have said all of this, I have to confess that I am also writing this letter to myself after a hard week full of mistakes big and small.  This week I have done something to cause my daughter to puke almost every day.  I have set rates incorrectly.  I have left her extension unclamped and made a mess.  I have cried tears of frustration at my own stupidity.  But I need to cut myself some slack and give myself a break.  My daughter is happy, stable, and gaining weight.  It was a bad morning, afternoon, hour, day, week.  But it’s okay.  She is okay.

You will be okay.

So, to the mom, dad, grandparent, foster parent, aunt, uncle, cousin etc. who suddenly finds themselves taking care of a tube fed person: it’s okay.  Know that there are people there to help you.  Know there are other people who have made mistakes too.  Even those of us who have been doing this for awhile make mistakes. You can do it.

Love,

A tubie mom who has a had an off week

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