Hello! It’s so funny to be sharing part of our story here–I remember reading these spotlights years and years ago before I was a special needs mom, and now I see them all with new eyes. My husband and I have four kids with a fifth on the way–Finley (8), Braden (6), Keaton (4), Merritt (2)… and an unnamed baby boy due in June. I used to be the kind of mom I roll my eyes at now–I frequently joke about “when I was a good mom” as I refer to the elaborate parties I threw, the costumes I hand sewed and the marathons I ran (ten of them!)… maybe one day I’ll be a “good mom” again, but for now I’m focused on trying to keep my kids alive and make sure they all live their best lives (whatever that means for each of them!) We lived a fairly normal, non-special needs life until July 4, 2016, when Braden (then 5) became sick… and sicker… until he was life flighted to a major hospital, intubated and eventually diagnosed with Acute Flaccid Myelitis, a polio like disease that paralyzes children. We’ve spent the last two years learning to navigate life with a kid with a trach, feeding tube and power chair while trying to be decent parents to the rest of our crew. Everyone is alive, so I think we’re succeeding. You can follow our story on Braden’s Facebook page, or my Instagram.
Miggy: Hi Rachel and welcome. I’m so glad you’re here today to talk about your son Braden and your very sudden and unexpected foray into special needs parenting. Can you take me back to when everything changed for Braden and your family? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?
Rachel: Braden was born perfect. He was 8 pounds 11 ounces and 23 inches long–and he scored a perfect 10 on his Apgar. Based on the snapshot of him at birth, you’d think it would be smooth sailing with him. But when he was two, he started to have some concerning behaviors, and was eventually diagnosed with Aspergers at age 4. We threw ourselves into therapies and plans for him–but it all got pushed to the back burner a few months after he turned 5. A routine cold landed him in the ER where he continued to deteriorate. He was initially struggling because he couldn’t swallow anything and was diagnosed with strep. But he continued to lose strength, even with high doses of antibiotics and steroids. Within a few days, he stopped breathing and was life flighted to a major hospital in Houston. We went from a perfect kiddo to a paralyzed little boy dependent on a ventilator to breathe within a few days.
As we watched Braden move less and less, we continued to wait for a diagnosis. We’d attributed his waning strength to not eating for a week–in actuality, a virus had been wreaking havoc on his spinal cord, damaging the anterior horn cells and leaving him paralyzed. He was eventually diagnosed with Acute Flaccid Myelitis–a new rare diagnosis that has affected a few hundred children over the last few years. (Cases tend to spike in the summers of even years–so if your child shows signs of weakness following a cold–take it seriously!!) The first weeks were terrifying–he was trached and on a ventilator and there were moments we could have lost him. And then the realization set in that he wasn’t going to bounce back to his old self–he’d probably leave the hospital in a wheelchair, with a vent and feeding tube. That was terrifying. A whole new world opened up to us.
Two years ago, I think we assumed things would be better than they are now (which is a depressing answer!) If you would have told me that almost 2 years later, he’d still have lots of areas of weakness and paralysis, still be unable to swallow a thing and still have the trach, I think I would have been completely overwhelmed. It’s God’s grace that we couldn’t see the future and only had to worry about the very next thing. I wish I knew what course his recovery will take, but I think not knowing protects us and pushes us to do our very best with him. The trach is no longer scary–we can suction and change it in our sleep (and have done that!) and we’re getting used to functioning as a family with a kiddo with special needs. (We killed it at Disney World a month ago!)
Miggy: Will you please educate us about Acute Flaccid Myelitis and explain how it affects Braden’s needs and your day-to-day life?
Rachel: Acute Flaccid Myelitis affects kids very differently–some children are only affected in one limb and make great recoveries while others are affected everywhere and make very little progress. Braden is somewhere towards the more extreme side–he was affected absolutely everywhere–at his worse, he was completely paralyzed, unable to swallow or breathe. We’re so grateful that he’s made lots of progress in lots of places. He remains weak everywhere, but is able to walk with assistance. His right arm is still mostly paralyzed, as is his left diaphragm, left anterior tibialis and some neck muscles. He still has a trach, and only uses his ventilator at night. He still can’t swallow anything (not even his spit!) so he’s tube fed and we suction spit out of his mouth every few minutes.
Braden spent the first seven months after onset in a hospital–first an ICU and eventually a rehab facility. He came home with 24 hour nursing care–something that has been a lot to adjust to! Our nurses are great–they help us keep him healthy and do a lot of his home therapy with him. Having full time nursing has been a huge adjustment–even though our nurses are lovely, it still makes you feel like you need to be “on” all day–a good mom, keeping a clean house and looking put together all the time. I gave that up fairly quickly, luckily!
It’s crazy how different our days are now–Braden is completely dependent on us for everything. He’s remarkably happy and unfazed by everything, and we’re so proud of how hard he works. He does roughly 7 hours of formal therapy a week with a therapist and countless more hours at home. We try to get him on our treadmill for an hour four times a week and we have a bike that electrically stimulates his muscles as he rides that we do four times a week as well. We try to incorporate therapy all the time–having him stand or sit on unstable surfaces, or working to strengthen his arms and neck. All the time–I’m focused on what I need to do to make sure I’m maximizing his recovery while still holding on to a normal childhood. We have to plan ahead and make sure Braden can access and be included in social activities–meals with friends are less fun when you can’t eat! In addition to the struggles of having a child unable to care for himself–we also have the added complexity from his trach. Making sure his airway is safe and stable is always at the forefront of our mind.
Miggy: What are the biggest worries you face for Braden? On the flip side, what are your hopes and dreams for him/her?
Rachel: I worry about how far he will progress–he’s still making tiny, slow gains, but we don’t know how far he will go. I want him to be able to live independently and get married and have kids–and I just can’t imagine what his future will look like. I worry about him making friends (the Aspergers plus special needs is tough!) I hope and dream about stem cell therapies and new medical advancements that will help his nerves to regrow and power his muscles. And I hope and dream that one day all this feels normal–even though all I want is our old life back–I just pray that we find our stride eventually.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Rachel: Braden can’t swallow–which makes meal times hard to include him. He will sometimes chew things at meals, and then spit whatever he chews back into a cup… which makes for some awkward looks from other diners at restaurants and from our waiters as we ask for an empty cup for him to spit in. It’s kind of gross, but it makes me happy that he can be included in this super weird way.
Miggy: Having a child who looks physically different–like using a wheelchair and having a trach–can present special challenges. How can people best approach or respond to Braden? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Rachel: Thankfully, Braden is fairly oblivious to the stares… but I know that won’t last forever! We live in a small-ish town where Braden has become a local celebrity, so more often than not we have people come up to us and tell us that they have been praying for Braden, rather than ask what’s wrong with him! He’s quick to tell people that he’s “famous” when we are in new places. We’re moving a few hours away at the end of the month and I’m sure it’ll be different there. Our whole community has walked through his diagnosis and recovery with us–and knew him before AFM. Our new community will have only known him in a power chair, with a trach, and I hate that for him. I hope people can approach him openly and treat him like any other kid–both of us are happy to answer questions about his equipment and diagnosis.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Rachel: Man, I’ve realized there are a lot of us! There are so many kids with so many different special needs, and so many families working so hard to give their kids their best lives. I’ve learned how critical it is to have a community behind you, because the road is long. If you are a friend of a special needs family–they probably still need support, no matter how long it’s been! They are carrying a large burden that doesn’t necessarily get easier down the road–reach out and do something to support them.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey, but at the same time this is such a unique situation. Is there anything you’d like to share about your other children and their relationship to Braden and how they have responded to experiencing such a sudden change in their brother?
Rachel: It’s crazy how Braden’s diagnosis has affected all our kids. Braden’s big brother, Finley (8), has been a tremendous part of his recovery. He never missed a beat with Braden–treats him exactly the same, encourages him in his therapy and helps with some of his basic needs (he’s our chief mouth suctioner!) I’m so grateful Braden has Finley in his corner. We have two younger kids (4 and 2) and another on the way… our younger kids have become resilient and adaptable. They are constantly being pawned off on friends and family while Braden has therapies and appointments. My 2 year old loves to cheer for Braden and help him when she can. My 4 year is mostly non-verbal (he could get his own spotlight!) and is slightly oblivious about what’s going on–but he hasn’t tried to pull Braden’s trach out, so I count that as a win! We haven’t been able to focus on developing his speech as much as I’d like because Braden’s needs always trump everyone else’s–but he’s making progress despite our poor efforts (cue the mom guilt).
Miggy: Tell us something you love about your child. A special story, a personality trait or just something others might not know.
Rachel: Braden has the sweetest heart–he’s a very sensitive kid. He’s taken these huge life changes in stride and while he works hard to get stronger, he also tells us that he loves his trach and his vent and wants to keep them forever. I’m so happy that he’s not embarrassed or upset about how his life has changed–he’s fully embraced it and is completely content. It helps to follow his lead and keep my heart in tune with his whenever I’m worried or overwhelmed–I can always look at him and remind myself, “Braden is OK. He’s just fine.”
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Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?
Rachel: I feel like I would say really depressing things to myself–it has been hard, much harder than I would have thought. Over and over, we generally get dealt the worst case scenario. BUT. We’ve survived and we still laugh and have lots of fun. Even though things are unimaginably horrible sometimes, they are also sometimes unimaginably good, and that’s enough to sustain us. My 8 year old called me out the other day for saying, “It’ll be fine.” all the time. But so far I’ve always been right–no matter what has happened, it’s always been fine.
