Special Needs Spotlight Then+ Now || Jeremy

So excited to be doing another Spotlight Then + Now update today! This is Jeremy and he was among my first spotlights back in 2012! (Number 14 to be exact and today he is number 225!) I’ve thought about Jeremy a lot over the years and I’m so glad to see that he and his family are doing well in the intervening years. You can read his first spotlight here. Enjoy!

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Miggy: Hi Bambi and welcome back! I’m so excited to speak with you again and see how Jeremy is doing. I can’t believe it’s been 7 years! First, let’s start with a brief overview of your son Jeremy–what is his diagnosis and how does this diagnosis or condition specifically manifest in your child?

Bambi: Jeremy has a super rare condition called Marshall-Smith Syndrome. There have been fewer than 100 people worldwide diagnosed with MSS since it was discovered in the 1970’s. It is believed to be caused by a random deletion on the NFIX gene. As with many syndromes, there is a spectrum, and Jeremy is on the more severe end of the spectrum. I’m not going to list all the technical terms, but basically, he is at the emotional and physical level of a six to nine month old baby, and he’ll be eight years old in May. He is still working on head control, he requires a feeding tube, a ventilator for airway support, and hearing aids for moderate-severe hearing loss. He is non-verbal and non-mobile, meaning he requires our assistance to move him from place to place, and a wheelchair.

Miggy: : As it’s been a number of years since we first did a spotlight on Jeremy, what has changed the most about him during this period of time? Any unexpected highs or lows you’d like to share?

Bambi: In the last spotlight, Jeremy wasn’t even a year old, so a LOT has changed! Since getting on the ventilator, he has thrived, and he’s even up to four hours off the ventilator every day! We haven’t had an unplanned hospital visit in almost seven years.  Jeremy has started school, and we have discovered that he is all boy! He loves to crash into things on his bike, he loves motion and he is a problem solver. He is supremely easy going, loves to be held and is always full of smiles.

Jeremy is now in second grade in an amazing school just for kids with special needs. He comes home every day with huge smiles and coos all evening. At school they do things like riding a bike, swimming, PE, art, they have a sensory room, and academics and even a school play, which they put on for everyone in the spring. It’s been astounding to see the progress he has made in school.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 care-taking look different than it used to, and/or do you feel more or less personally balanced than you used to?

Bambi: Oh, I could take pages and pages to answer this question. First and foremost, I have learned structure. Everything in my life is structured. Jeremy gets fed every three hours, and the feeding lasts an hour, so I am always watching the clock. The night nurse comes from 11pm until 7am every night, so my sleeping schedule is set. We have become very routine based and everything just sort of flows around it. All three of my children are on different school schedules. My oldest is in year-round school, Jeremy’s is a traditional schedule, and my youngest is in preschool twice a week.

Everything is planned, even a “quick” trip to the grocery store. We can’t just get up and go. We have to unhook Jeremy’s vent from the humidifier and connect to his travel settings. We need to get his wheelchair loaded onto the car, make sure we have his suction machine, emergency bag, diapers, a rag for his face (for drool and snot), and his feeding bag and pump. It’s exhausting, especially if I have more than one place to go.

As for my views on disability…that’s a hard one. I’m more aware than I used to be. I think before having Jeremy, I used to look at people with disabilities with sympathy or pity. Now, I look at them in awe. They have so much stacked against them, and they find ways to thrive in a world that does its best to ignore or belittle them. They don’t feel sorry for themselves (any more than anyone else does). We all have challenges in life, some challenges are more visible than others. I think my empathy for humankind has grown exponentially. A life is a life, no matter how different it may seem.

I am more balanced these days. With Jeremy and my oldest in school, and my youngest in preschool twice a week, I am starting to have “time” to myself again, and I am beginning to get back into hobbies that I haven’t been able to do since high school. I’ve also experienced new things, such as snorkeling and kayaking. I’ve been out of the country several times in the last few years, visiting places around the world such as Japan, Scotland, and the Virgin Islands (and more!). I’ve learned that caregiver burnout is a very real thing, and if I don’t take care of myself, my family suffers. I think this is important for every parent to learn, not just special needs parents/caregivers.
Mignon: 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? (Feel free to be as specific or vague as you’d like.

Bambi: This is another question that I could ramble on about. The short answer is YES, having a child with special needs takes its toll on relationships with family and friends. When Jeremy was first born, there was an outpouring of support and love. Then, as the months progressed and things weren’t “new” anymore–when we needed help and support the most, when Jeremy was turning blue and struggling on a daily basis to live–support fled. Joshua and I learned really fast that the only one we could depend 100% on was each other, and it strengthened us in a way that I don’t think anything else could have.

Now that so many years have passed, family and friends have come back. My grandparents even sold their home in California and moved out here to help when my youngest was almost a year old. My grandpa, who just turned 84, has been a great source of support. He has developed a special relationship with my youngest.

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?

Bambi: That somehow, someway, everything will work out. When we first discovered that things weren’t “normal” with Jeremy, there was a lot of fear and grief. If I could go back and tell my younger self anything, it would be this: let yourself grieve for the child you thought you would have, but just know that the child you DO have will bring you more joy and love than you can possibly imagine. You will meet people on this journey that will change your life, and you will see that there really is more good in the world than bad. You will get back to you again.
Miggy: Lastly, is there anything else you’d like to add about identity, family or your views in general as they relate to disability?

Bambi: My family has developed an unusual identity. Because we are so blessed to have gotten on a waiver program, we have nursing so we can have time recharge, but because of this, there are times when we seem like two different families. A “typical” family, and a family with a disabled child, so we know both worlds.

Our girls love Jeremy, and even though a lot of my attention is focused on him, I make sure to spend special time with the girls as well. It’s not always even, but my girls accept it. They know when I am taking care of Jeremy, that it’s a lot like taking care of a perpetual infant.

My oldest is nearly eleven and there are times she doesn’t like going to the store when we have Jeremy because she “hates when all the people stare at us.” And people do stare. Especially children. I’ve had kids stare at Jeremy’s eye (because it’s red from the corneal abrasion he had when he was in the hospital) and make puking noises, or say that he’s really freaky.

But we live our life the best we can. When Jeremy was first born we determined that we would show him as much of the world as we can for as long as he’s with us. So we do. We don’t let his limitations stop us. We take him swimming, we go hiking. We’ve taking him to bouncy houses. He absolutely loves kayaking. He goes to the zoo, the museum, and more.

We’ve adjusted to our new normal, and while it isn’t always easy, it’s definitely worth it. Just like most things in life, the harder you work for something, the more rewarding it tends to be. If you’d like to follow our journey, my blog is: https://everachilds.blogspot.com.

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Bambi, thank you so much! I was seriously so excited to read about Jeremy again and so glad to see he is thriving in school and doing so well. I appreciated what you shared about the support you received over the years and how after it became “normal” you sorta lost that for a while, but that you also gained a new level of love and trust with your husband. We hear so much about the strain a disabled child can put on a marriage, I think it’s important for people to know that having a disabled child can also strengthen a marriage. Lastly, I am SO HAPPY to hear that you’ve found more balance in your life–that you guys are able to get out on adventures and that you’ve been able to travel abroad even. Again, I think these are things most people assume go out the window when you have a child who needs round-the-clock care, but it’s great to know you have been able to “get back to being you” as you said. Thanks again Bambi! All the best to you and your family. 

You guys, if you or someone you know would like to participate in the special needs spotlight email me at thislittlemiggy at gmail dot com. Also, if you’re a former spotlight participant and would like to give an update please email me as well–I’m loving these Then + Now posts. 

Have a great weekend!

XO, 
Miggy