Special Needs Spotlight Then + Now || Lydia

Hey everyone! Welcome back to another Then + Now spotlight, where we reconnect with a family who was featured in the past and see how they’ve grown and changed over the years, as well as how their condition or disability has changed as well as their views. I have LOVED bringing back some of our favorite spotlights and am so happy to have Michelle and her daughter Lydia with us once again. We first met Lydia in 2014 when she was still a toddler and you can read her spotlight here. She’s a big kindergartner now and has a much better grasp of her medical condition MCADD. I hope you take a minute to read because it will remind you once again, that you never really know what someone is going through just by looking at them. Enjoy! 

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Miggy: Welcome back Michelle! I’m so excited to catch up with you and your daughter Lydia, Lets get started! First, let’s start with a brief overview of your daughter–what is her diagnosis and how does this diagnosis or condition specifically manifest in her?

Michelle: Lydia was born with an inborn error of metabolism called Medium Chain Acyl-CoA Dehydrogenase Disorder (MCADD for short). MCADD is a rare metabolic disorder where her body is missing the enzyme to break down medium chain fatty acids into energy. Essentially, our bodies break down food into various small particles (including fatty acids) and it turns these particles into energy. There are different lengths of fatty acid chains and Lydia is missing the enzyme to break down the medium length ones. This really becomes a problem when she gets sick and can’t maintain her own food intake. During a time of restricted food intake, a typical person’s body will eventually metabolize its own body fat for energy. Lydia’s body can’t do that because body fat is mostly medium chains, so if she can’t eat enough food to maintain her own energy, she will literally run out of energy in every single cell. If she goes without treatment, she will eventually have seizures, go into a coma, and die (typically within 24-36 hours of not eating). Luckily treatment is very easy and prevention is key! We just make sure she eats regularly and if she’s sick and can’t eat, she has to receive an IV with a dextrose (sugar-water) solution in the hospital until she can eat enough again. There’s more to it than that, but it gets pretty detailed and I still don’t understand all the biochemistry.

There are other aspects of her disorder as well, such as not being able to metabolize foods high in medium chain fatty acids (like coconut oil or fatty foods). While she can have those things occasionally or in small doses, the fats will build up in her cells and liver and cause problems later on. We eat a low-fat, high carb diet with lots of fruits and veggies. She also takes an enzyme supplement that helps transport the unused fatty acid chains out of her body, and she’ll probably be on that supplement the rest of her life.

Miggy:  We did a spotlight on Lydia back in 2014, in the years since what has changed the most about her during this period of time? Any unexpected highs or lows you’d like to share?

Michelle: When we first did her spotlight in July 2014, Lydia was 15 months old and we had just gotten out of that awful, exhausting first year. During her first year she ate small amounts every 90 minutes to 2 hours around the clock. She was able to extend her feedings a little as she got older but her body was much happier with eating more frequently and we were under strict guidelines for how long she could go without food, even while sleeping. In July of 2014 Lydia had never been hospitalized with an illness. In fact, she hadn’t been sick that much at all, which was a huge blessing! She also didn’t need to take the enzyme supplement yet since her blood work for that enzyme was still in a normal range.

Since then Lydia has been hospitalized 7 or 8 times. She’s gotten sick a lot and we’ve had a few close calls where she almost had to go in, but we were able to manage at home. We’ve learned a LOT about food and metabolism and changed our own diet fairly significantly. She has been taking the enzyme supplement since she was 3. The enzyme supplement comes with its own side effects and it took us awhile to figure out the right dose for her body.

Unexpected lows? How much I think about MCADD. I’ve spent a lot of time reading the recent literature and newly published research on MCADD. Not knowing how this will affect her future is difficult. Since these fatty-acid oxidation disorders were only discovered about 30 years ago, they’ve only been part of newborn screening in most states for 10-12 years. There just aren’t a lot of adults who have been diagnosed so there’s a lot about her future that’s still unknown. Surprisingly for me, it’s been hard to accept that she will always have to deal with MCADD. I like to be a “fixer” and I can’t fix this.

Another unexpected low is how hard hospitalizations are. Not physically hard– we know the routine now and it’s not as stressful as the first time– but so emotionally draining. It sometimes takes me days to “shake off” all the hopeless feelings I have during a hospitalization. Leaving my other kids to take her to the hospital is heartbreaking, especially when they’re sick too. I think I get a gray hair every time her teacher emails me, “Well, Bobby went home today with the stomach flu…”!

Unexpected highs have been seeing how much my other children want to learn about MCADD and help her manage it. They often ask about the details and help her make wise food choices if I’m not there. Another unexpected high has been seeing her learn and grow. At a dinner with extended family on Sunday she brought me all the food she had and asked if she could eat the food (making sure nothing is too fatty). She and my other children are learning about nutrition, which is a great bonus! Along with that, all the things we’ve learned about nutrition is fascinating and we eat a lot healthier than we used to! We try new recipes all the time and that has been really fun. Another unexpected high has been the camaraderie found in the Fatty-Acid Oxidation Support Group. Lastly, the opportunities for education have been a huge high for me! Turns out I LOVE talking about MCADD to people and have had the opportunity to do so a few times.
Miggy: What has changed the most for you personally about your identity as a special needs parent? For example, have your general views on disability evolved, does your caretaking look different than it used to, and/or do you feel more or less personally balanced than you used to?

Michelle: I have a lot more compassion for people. Looking at Lydia you’d never know she has a rare metabolic disorder. Now I apply that to people around me– maybe they’re struggling with something invisible as well. Treat people with compassion. Give them a little extra grace. Everyone has some kind of struggle in their life so be kind, be kind, be kind. I don’t know that I ever avoided people with disabilities but I definitely go out of my way now to interact with the person or their family now. Support is so important. My child and your child might have very different issues or needs, but just knowing that someone understands some of the stress makes a world of difference!

There are times where I definitely feel unbalanced, and when Lydia is sick our whole family is tense and unbalanced. We are still working on how to improve that dynamic in our family. My other kids have made comments about Lydia’s needs superseding everyone else’s when she’s sick and that is totally true. We try to give the other kids extra attention after Lydia has been hospitalized knowing that they feel this way but it’s a work in progress.

I now have fairly strong views (understatement, ha!) on vaccines and going out in public when you’re sick. Lydia had to have a delayed vaccination schedule and gets sick easier and more severely than my other kids. The stomach-ache of a cousin landed Lydia in the hospital for 2 days. If you or your children are sick, STAY HOME. Lydia’s immune system has gotten stronger as she’s gotten older and her geneticist says it will continue to improve, but we still try to avoid illnesses like the stomach flu. (No one likes the stomach flu anyway!) No one is more paranoid than a mom during flu season who is trying to keep her child out of the hospital!

Miggy: I’m curious to know if you have noticed a shift in the relationships or dynamics in your family over the years as well that might be directly or indirectly affected by your special needs situation? For example, sibling resentment, marital challenges or perhaps the ties are stronger than ever?

Michelle: While my other kids have expressed resentment that Lydia’s care sometimes demands most of our attention (like when she’s sick), they are also very protective of her. If they notice a lot of fatty food at an event, they help her make a better food choice. They occasionally ask people around us, “Have you been sick recently? We don’t want Lydia to get sick.” They also want to learn about her disorder and what it means for her as an adult (and for them as well, since some of them are probably carriers of the gene). Someday my husband and I won’t be around and I will need her siblings to advocate for her if she can’t advocate for herself.

In our marriage, I used to rely a lot on my husband for all our medical “stuff” since he is a nurse. Now, while I still rely on him for all our medical stuff, I’m the one who has researched the most about MCADD. He lets me take the lead when someone asks a question about it and I’m usually the one to go to the hospital with her. It’s been an interesting dynamic because I have found my own voice in this.

Miggy: I still it important to find humor in our daily lives and LOVE hearing all the funny anecdotes related to disability–anything recent funny stories you’d like to share?

Michelle: Generally we try to allow her some freedom with food choices but sometimes at potlucks or picnics almost all the food is fatty and she’ll ask us what she can have. Its so funny when we are eating someplace in public and Lydia asks, “Mom, can I have this? Does it have too much fat in it?” People stare at me because I’m sure they think I’m food shaming my kids!

Lydia is a very precocious and social kindergartner now. Combined with the protectiveness of her older sisters, they all like to tell all of the people we meet about her disorder. I try to follow their lead, but it has led to some hilarious conversations. Most recently we were at the local YMCA and there was a boy there who was talking with my kids. One of my kids started explaining about MCADD and the boy said, “Yeah, I totally get it. I have ADHD and that’s basically the same thing.” I had to turn away so the boy couldn’t see me laughing! Kids are hilarious.
Miggy: It’s really hard to see the lessons we’re being taught when we’re in the thick of it–often we need time to give us perspective we don’t initially have. So what do you feel like you’ve learned in the past few years that perhaps you didn’t see at first?

Michelle: Probably the two biggest lessons I’ve learned so far are acceptance and being grateful. Acceptance, because no matter how much I learn or advocate or research or explain, Lydia will have to live with MCADD her whole life. I can’t change her DNA and I sometimes still struggle with that. To go along with acceptance, I’ve learned a lot about gratitude. It’s hard to feel grateful when you’re traveling out of state to your grandmother’s funeral and your daughter and son start throwing up, so you drive as fast as you legally can, drop the kids and stuff off at the house, leave the sick boy with extended relatives because husband had to stay behind and work, and head to the hospital! (Seriously, this happened 5 weeks ago and it was not fun). I could choose to be angry and bitter about MCADD. Instead I choose to be grateful for good doctors, children’s hospitals, those wonderful extended relatives (who all got sick that weekend thanks to us), nurses who get IVs on the first try, popsicles, and unlimited movies. Sure, I have lots of not-happy moments, but gratitude is a daily choice. When the negative feelings come I let them come and I sit in them for a little bit. Then I choose gratitude, because it’s a lot happier to live that way.

Miggy: Lastly, is there anything else you’d like to add about identity, family or your views in general as they relate to disability?

Michelle: The only thing I’d add is that we don’t look at Lydia and see MCADD. We see Lydia. She’s beautiful, smart, funny, SO spirited, and social! She loves to swim, play at the park, climb trees, ride her bike, eat good food, and play with cousins. She is more than a diagnosis, more than a DNA mutation. She is herself and she is glorious.

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Your last line, “She is herself and she is glorious.” Amen and amen. I am so glad you talked about having more compassion as you understand so well how people can be dealing with things that are completely invisible, but at the same time can also be a ever-present, important part of their lives. Also, this goes for how you often feel judged for having to monitor her food, specifically her fat intake, while people around you are thinking who-knows-what. I admit, that I’m sure I would be judging you a little! This is a great reminder to once again, withhold judgement. Assume the best. Lastly, your struggle with acceptance stuck with me. You’re a fixer, yet you can’t fix this. Yes… I think a lot of us, in one way or another, relate to this idea of learning to let go and reach for gratitude instead of resentment. Thank you again for updating us on Lydia and your family and best of luck as you continue to manage MCADD and educate the world around you.