I feel like there is a misconception that children with disabilities just stay at home and aren’t able to participate in many normal activities. Given, there are times when we have to be selective about where Lyra goes and what she does. While she has been doing well recently, she is still considered medically fragile and complex. Also, there are some “normal” one year old activities Lyra simply cannot participate in because developmentally she physically just isn’t there yet. However, that does not mean we are restricted to staying at home. You would be amazed at how creative parents and children are. The truth is, like many other kids with disabilities, Lyra is just a kid… we just do things differently.
The biggest hurdle for Lyra participating in activities is her tube (not her developmental delays). It’s not the fact that it is there, it’s the fact that she is connected to her pump 20+ hours per day. So, I have become very creative. My two most valuable tools: her backpack and a Mommy Hook. Oh how I love the Mommy Hook. I hang her backpack everywhere: in the car, on a swing, in a tree, on a fence, on the back of a chair, on her walker….. the list goes on and on. Lyra goes everywhere with me, and she does it with her pump.
The proudest moment I had, as far as creativity goes, was figuring out how to let her swim while connected to her pump. On our recent trip to Hawaii we simply put her backpack into two plastic bags and then floated it behind us in an infant floaty! It worked great. We were able to swim with her like we did with all of the other infants in our family. And she had a blast! She was able to do it…. just in a different way.
Now, I am not saying that Lyra is able to do everything an average one year old does. Developmentally she just isn’t there yet and it would be unreasonable for me to expect her to do those things. She doesn’t walk or even crawl (although she is SO CLOSE), so some activities just aren’t going to happen right now. She also has trouble with the heat and seems to struggle a little regulating her body temperature, so we just have to make sure we have a way to cool her off with these hot summer months. But she loves to swing and even goes down slides with her daddy. She plays with her cousins and sits at the dinner table with the rest of the family. She just comes with a few attachments and we just have to do things a little differently.
Swimming in Hawaii
Swinging at the park
Swinging at home
Playing with Monkey
In the garden with Mama
When there is no “getting better”, your definition of “better” changes.
Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.
Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”
However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:
“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”
Now, does this mean that you shouldn’t ask me if Lyra is “better”? Absolutely not! Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.
And really, there is no cure for cute.
This week is Feeding Tube Awareness Week. In honor of that, I have been trying to educate those around me. I asked a number a group of caregivers (parents/grandparents/foster parents) to share some of their stories with me. Today’s topic is about the things people say to us and to our children. Even when people mean well, their words can be incredibly hurtful. These things have been said to us by strangers, family members, friends, and medical professionals:
- “Have you tried letting them get hungry?” or “If you just stopped using the tube I am sure they would get hungry enough to eat.”
- Many parents posted versions of these two comments. Some of us (myself included on this one) watched our children almost die because medical professionals didn’t believe us that our child wouldn’t eat. They don’t necessarily get hungry,or when they do, our children don’t eat enough to survive. If it was that simple, they wouldn’t have a tube.
- “Did you try breastfeeding?”, “So you don’t breastfeed?”, or “If you just breastfed your child wouldn’t have ended up needing a tube.”
- Breastfeeding is a VERY sensitive topic for this crowd. I think I can safely say that almost all of the moms who were able to tried to breastfeed. If we couldn’t do that, we at least tried to pump to give our children breast milk. Some of the moms spend months pumping. Some, like me, had no choice but to switch to formula. We all feel like the whole “breast is best” thing has been shoved down our throats, and we feel incredibly sad and guilty that we did not to experience that with our children.
- “Have you tried giving them _____?”, “I had a picky eater. I gave them _____ and they started eating.”, “I bet I can get your child to eat.”, “If you just gave them kid food, they would eat.”
- Don’t you think if it were as easy as giving them a different type of food we wouldn’t have ended up with a tube?
- “So when are you taking out the tube?” or “Can you please remove the tube for family pictures?”
- For most of us, we have no idea. The answer may be never. That is okay. Our child is here. Isn’t that enough?
- “This is disgusting. You shouldn’t be doing that in public.”, “Can you please feed your child at home, before you come over?”
- I was amazed at how many parents said they had heard this when feeding their child in public. Breastfeeding moms, you are not alone.
- “What is wrong with your child?”
- This is one where I know people mean well and are curious, but there is a better way to say this. One mom explained perfectly why this is so hurtful. Her daughter is a little older and when people say this her daughter hears, “something about me is bad/wrong.” These kids already know they are different and many struggle with confidence. Instead, you can ask the parent or child what the tube is. You can ask why they have a tube (many people are more than happy to educate about their child). Bonus points if you throw in a comment to the child -if they are older- like, “I bet that tube helps make you big and strong!” Make it a positive thing, not a negative one.
- “The tube is just such an inconvenience.”
- This “inconvenience” saved our children.
- “I wish my kid had a tube. It would make dinner time/giving medications/etc. so much easier.”
- There is nothing easy about having a tube and none of us have a happy story about ending up with one. Also, there are many other things that come with tubes: reflux, vomiting, chronic constipation or diarrhea, etc. While tubes have saved our children, we do not wish this upon anyone. Although, a little piece of me does recognize that it is nice that my 9 month old does not spit her many medications back at me.
- “I will pray that he/she gets better.”
- This is one I personally do not have any experience with, but a number of parents posted it, so I am sharing. From what I understand, their problem with this comment is that, in the parent’s eyes, the child is just fine how they are. They are happy and loving kids who are just different. Some of them won’t “get better” because they have a genetic disorder. There is no cure for genetics.
- “Your child looks so healthy. Are you sure they need a tube?”
- The tube is why they look healthy.
- “I think the tube is just a crutch.”, “If you just took the time to feed your child, they wouldn’t need a tube.”
- Yes, we are such lazy parents. That is why we never sleep more than a few hours at a time(feeding also happens all night for many of us), we are always running to doctor and therapy appointments, we spend days in hospitals/ERs with our children, and hours researching/asking other parents for solutions to challenges we are having. Yep, that’s it. We are too lazy to take care of our kid…
- “If she eats by mouth, why do they need a tube?”
- Some kids, like Lyra, simply don’t eat enough. They are working on it, but until then, they need a tube. Also, some kids have medical conditions where they need medications that only work correctly when delivered directly into stomach or intestines.
- Saying nothing at all and just staring.
- Our child is not a sideshow. Either ask us a question or stop staring.
Okay. Enough with the negative stuff. This isn’t everything, but you get the idea. Here are some positive things to say, especially if you are curious:
- “Can I help you? Do you need an extra set of hands?”
- Especially when something is going wrong during a public feeding, this is SUCH a blessing. You have no idea how much it would help to have an extra set of hands when setting up a feed in public. Most of time I end up feeling slightly frazzled when doing it, so I would love it if someone offered to keep something from falling/spilling.
- “What is your child’s story?”
- The vast majority of us are happy to educate you about feeding tubes and how our children ended up with them. Our kids are little fighters and we are proud of them.
- “Is it safe for your child to eat by mouth?” – “Do they eat anything by mouth?”
- This is always a great question before offering a child food (like at a family dinner). It’s just respectful and keeps everyone safe/happy.
- You are allowed to be curious. Just ask us about our children. Like I have said before, we are happy to educate.
It’s official, Lyra can stand on her own (with some support from an object). While this is a major milestone for any child, this is truly amazing for Lyra. Lyra has missed so many other milestones. She still doesn’t use her hands and arms well, and she still does not roll from her back to her stomach (she is close). But, if she holds our hands, she can pull herself up and stand!
This is what I am choosing to focus on today. I feel that many parents of special needs children do this. We fully celebrate the milestones our children reach. Lyra goes home from the hospital tomorrow. While we have been able to get her hydrated and greatly reduced her throwing up, we have not found a solution that stops the puking. We also do not know 100% why she is throwing up so much. The doctors have theories, but there really isn’t a test that can provide us with definitive answers. I am excited to go home, and I am worried that we will just end up right back here. It is a constant rollercoaster.
But today she stood on her own two feet. My little girl is defying the expectations the original geneticist gave us. She is a loving, engaged, active, strong little girl. Her tummy just doesn’t work quite right.
P.S. Her onsie says “Loved”, you just can’t see it.
I have recently noticed that I often describe Lyra by her diagnosis. When I introduce Lyra I frequently only mention her age and the negative things: she doesn’t eat, she is very small, she had a feeding tube, she has two rare genetic disorders, etc. I think this is in part because I spend so much time introducing her to doctors. They want to know all of things about her.
But Lyra is more than her diagnosis. She is more than her complications.
Sometimes as a mother I get so focused on what is wrong with Lyra, I forget to focus on what is right. She is a happy, loving, joyful child. When she smiles, she does it with her whole body. She scrunches her face, arms, and legs all at once. She loves her daddy and is mommy’s little girl. She is curious and carefully watches the world around her. She soaks it all in and loves to be around people. While she comes with a long list of difficulties (many of them not unique to her), Lyra also brings joy to our lives.
So one of my many goals is to do a better job introducing Lyra and not her diagnosis. She needs that example. As she grows, she needs to know that she is more than what is wrong.
I have finally found a community of moms/parents I can share stories, ideas, and challenges with. It is a virtual group: a page on Facebook. But it is my lifeline and a place of comfort. Today a mom posted that her baby just came home from the hospital and part of her is devastated that her baby is tube fed. How brave of her to post what ALL of us have felt/are feeling. We all had hopes, dreams, and plans for how we would feed our babies. I wanted to be a strict breastmilk mom. While pregnant, I dreamed of bonding with Lyra while breastfeeding her. It was going to be my selfish time with her. Something only I could give her. While I was able to pump for 2 months and at least give her breastmilk, it ended up being that my milk was not what was best. As I have written previously, I was heartbroken.
Not being able to give my daughter a bottle. Praying that she keeps her formula down. Being covered in puke for the third or fourth time in a day. All of this has brought me to tears many times. All of the parents I have exchanged with in this group have been there, or are there. Some days are easier for me, and some days just suck. These people have helped me see one thing: Fed is best.
While this term has been used most recently to try to calm the formula vs. breastmilk and bottle vs. boob battles, it has special meaning to tubie parents. While part of us will always feel sad that this is how we have to feed our child, we also become overjoyed that we CAN feed our child. Because of these tubes, our children are with us. As tubie parents, we should take pride in the time and care we put into feeding our children. We know EXACTLY how much they have had to eat that day. We carefully measure each drop and monitor every bag, bottle, and syringe. We lovingly mix formulas to exacting calorie counts, prepare blended diets, or do a number of other things I don’t even know about yet because Lyra isn’t there. We lose sleep over feeding EVERY SINGLE NIGHT. We should take pride in everything we do to feed our little ones because FED is best. It is also beautiful.
So here is to my tubie family for helping me see the positive, and understanding me. Thank you for sharing your stories and your photos. Thank you for giving me your time and support.
Lyra being fed at night back when she still had an NG tube