I recently read an article about Becky, Barbies friend who uses a wheelchair. Becky, unfortunately, was discontinued and when you find out why you might think it’s slightly funny, but also a little depressing. The full article is here: https://www.pri.org/stories/2017-04-09/becky-barbies-wheelchair-bound-friend-was-discontinued-heres-why. If you don’t want to read it I’ll paraphrase. As it turns out, Becky’s wheelchair didn’t fit in the dreamhouse. It couldn’t even fit in the elevator. The only place Becky could go was the kitchen. The article quotes “In the end, it was too complicated to redesign Barbie world to fit Becky.” So what happened? They pulled Becky off the shelves. We’re talking about a plastic doll house, but it’s actually a parody to real life. The article also quotes “it speaks volumes about the way we think about disability . . . we talk about “fixing disability” instead of “fixing society”.
Here’s the thing – ADA doesn’t even come close to actually making things available to
Hudson. They may be “accessible,” as in he can fit through the door, but usually he can’t participate or interact with the things inside. He can’t reach things in the touch tank, he can’t see the animals at the zoo because the glass doesn’t come down low enough, or he can’t play at the train table because it’s too high or too low. The solution can’t be to just continue focus on “fixing him” so we can get rid of the wheelchair. There are over 3 million wheelchair users in the US alone. You can’t get rid of the wheelchair user, we have to do more. So we as his parents make the world available to him by unbuckling him, lifting him up, carrying him, modifying as appropriate, etc. Most parents with kids with Cerebral Palsy will facilitate all these same things so their kiddos can experience life, often at expense of their own bodies. And there’s no breaks and no help. When we’ve looked into having him at a summer camp they all say “yes of course he can come” but . . . “you have to stay with him the entire time.” Guess what? I’ll be with Hudson 100% of the time this summer. He relies on me for everything and honestly I’m going to need a break sometimes this summer. I love being with him and am sad when he’s away, but being a caregiver can be exhausting. Not to mention I’d be paying to attend summer camp with him for a week. That’s not even a possibility if you have other kids and honestly it’s not something I’d pay money to do. So he doesn’t participate. Listen – I’m not complaining. The point I’m trying to make is this. . . caregiving is hard because the world isn’t setup for Hudson, just like the dreamhouse isn’t setup for Becky. I don’t want to change him so he fits into the mold society is setup for. I don’t want to wait until he can walk or stand or whatever to participate in these things. I DO want to change society so it’s truly as available to him as to every other child. I am passionate about him being able to fully participate in it. That’s why I really want him to be able to go to summer camp this summer. And not a special needs summer camp. I want him to go with his sister (who can help keep an eye out on him). And I want him to be with both neurotypical and non neurotypical kids. I want the staff to get creative and actually include him without me having to facilitate everything.
So, you can imagine my joy at finding out that someone at the Morgan Family YMCA, a special education teacher, has the passion to pilot an inclusive summer camp program. She bird dogged it through their risk management department and it took a month but we finally got permission for Hudson to attend camp!! And no it’s not a camp where they’ll let him just “attend” but they will modify all the activities to make it fully available to him. For example, when they play tag they told me they’d give him a pool noodle so he could reach out and touch the other kids. We just met with her yesterday to come up with a full plan of how they’ll meet his needs. I’m really really happy for him. He cried when we had to leave and that was just after the tour. If this goes well they are going to push for funding to make all their camps inclusive for kids with disabilities. This feels like another step in the right direction – towards a world I’d like to see some day. The wheelchairs are here to stay so let’s focus instead on making people with disabilities truly part of the community. And let’s give some support to special needs parents who can’t just drop their kids off for parents night out or who can’t just get a babysitter to watch their kids for a date night.
So how can you help? Encourage your kids to be creative and find ways to modify activities in ways that include kids with special needs. Encourage them to ask questions about kids with disabilities. Teach them to think about others needs early on so that when they grow up and become architects, interior designers, builders, owners of coffee shops, teachers, etc. they can help create spaces for everybody in the community. That’s how we are going to change things. Just like this woman at the YMCA who met a boy in elementary school with a disability and decided then she was going to grow up and help kids like him. Your children and grandchildren are going to make this vision possible.
Also, it’s CMV Awareness month so if you haven’t already please educate yourself. https://www.nationalcmv.org/default.aspx
I’ve noticed these posts are getting farther and farther apart. Yes, we are super busy with the twins but also I think our “normal” really does feel normal now. By that I mean nothing strikes me as super interesting that anyone would want to read about. It “feels” normal even though I know it’s not. So here’s an update on our normal, not so normal life . . . It’s been 5 months since Hudson had the fundoplication surgery. Two months later he started vomiting past the fundo. We were really disappointed to say the least. A few months after that we saw a new naturopath who suggested adding Miso to his blended diet. It took about a month but slowly the vomiting decreased. I’ve been so hesitant to share because as soon as you share something like that the cosmos changes and he’ll start vomiting again. But, it’s been 2 whole months now and he’s really hardly vomiting at all. We tested this theory when we ran out of Miso and the vomiting came back. I knew in my heart of hearts that there was something out there to help his gut heal but never would have thought Miso. (We literally tried everything else natural for 2 1/2 years before we decided on a feeding tube). So yay for fermented soy beans!
I quit my 14 year career at the end of January. Although initially terrifying, it’s been wonderful. Really, really wonderful. It’s also meant I’ve have had more opportunities to work with Hudson using Feldenkrais. He had an amazing lesson that resulted in his entire left side “waking up.” It’s “woken up” a few times before, but it’s never stayed. Well it stuck now. Not only did it stick, but his left side is being integrated into himself really quickly. It’s affected his left leg and even his eye contact has greatly improved. Having him more aware of that left side has given him a much needed boost in his development. It’s really exciting!! Just yesterday he tried to use both hands to put his own shirt on!!! Kind of amazing!! He didn’t get very far though because he was trying to put both hands through the neck!
We just had Hudson’s IEP last week. That’s his Individualized Education Plan. Our easily distractible, extremely social boy isn’t faring so well in a general education classroom as it turns out. He’s so busy watching everybody and trying to make them laugh that he’s not learning. So they’ve started pulling him out of class room more for one-on-one instruction and he’s learned 4 site words. So this new method of instruction works for him. I was really disappointed because I thought he’d be able to perform as well as his peers academically, but then I think about how lucky he is that he has people who believe in him enough to try different learning strategies. And how lucky he is that he has an amazing para who will pretty much become his one-on-one teacher now. He’s lucky to have options and flexibility that allow him to learn in the way he learns best.
In March Hudson had a grand-mal seizure. He just happened to be sleeping with Scott and I when I woke up to him making a strange smacking noise with his lips. The rescue meds didn’t bring him out of the seizure so we had to call 911. That was the longest, most difficult 15 minutes of my life. There are no words to describe it.
For myself, I’ve been reflecting how we are very slowly making the transition out of living day-to-day. For a few years there I had to live day-to-day. There was too much coming at us, too much to think about, too much to worry about, too much to do. So I lived day-by-day and sometimes moment by moment. It was a coping mechanism. It looked like this . . . Focus on what you needed to do right then only. First just breakfast or a shower. Then, focus on the next most important thing you have to do that day. It was hard to transition to that mode, but necessary. If it seemed like I was flaky the last few years now you know why – I literally couldn’t do more than plan for the next moment or day. Now we are transitioning from that mode back to planning for the future. What does Hudson need to focus on in his education and skills for the long-term. I knew we’d gone someplace exciting when Scott and I were having a conversation about how when we retire we’d like to buy a travel trailer and road trip all around the US. It’d be accessible of course. Until that moment, thinking about Hudsons future (and ours) caused me anxiety (hence the living day-to-day). I even went so far as imagining us playing card games at night and wondering how the wheelchair lift would work. Scott and I have been together for 19 year (married for 13) and we’ve always had conversations about our dreams for the future but we stopped a few years ago. Feels really good to have these conversations again. There’s still a lot of uncertainty, so we make plans and dreams knowing that we still have a have a lot of flexibility. We adjust as we go, but we move forward nonetheless.
“Oh noooo – he’s not going to need to be in a special needs preschool” – That’s what I was thinking about 5 years ago when someone told me when he turns three he’ll transition into a special needs preschool. I remember it vividly. It was early on in our journey and clearly I was in denial. By the time he turned 3 I fully embraced special needs preschool, but it was a journey.
This year Hudson started Kindergarten. When I tell someone he’s in Gen Ed it usually goes like this. “It’s not a special Kindergarten??” Me: “No.” And then they look at him with a surprised expression (almost as if they are seeing him for the first time) and they say “Wow!” To be honest, part of me revel’s in their surprise because they clearly underestimated him. But I get it too. If you don’t spend enough time with Hudson, or have the patience or understanding to really “see” him you’d think he can’t do much.
Thankfully the teachers and staff at his school do “see” him and it was at their suggestion he be placed in Gen Ed. At the time I wasn’t sure where he needed to be – I was hoping for Gen Ed of course but had they suggested Special Ed I wasn’t prepared to go to war over it. A few weeks into the school year I knew this was the right place for him.
There’s the educational benefits, of course, that he’s receiving the same education kids his age are receiving because cognitively he’s pretty smart. But the piece that lately I’m most thankful for this is this . . . When his classmates are exposed to a child like him (nonverbal, wheelchair, epilepsy, tube fed) at this age it lays the foundation for acceptance and respect for humanity in general. At lunch one day a little girl was asking all kinds of questions about Hudson one after the other. Finally another little girl in Hudson’s class jumped into the middle of the conversation and just simply said “You know, everyone’s different. I have brown hair and he has yellow.” And that was that. But that IS it isn’t it! THAT. IS. IT!! That is the reason inclusion is important. His classroom and his school is filled with impressionable little minds. Children who will grow up and lead the world. Children who may be in situations where they can take advantage of the “little guys” of the world. Statistically Hudson is 3-4x more likely to experience violence as a disabled person. Why? According to the WHO organization this is why.
“Factors which place people with disabilities at higher risk of violence include stigma, discrimination, and ignorance about disability, as well as a lack of social support for those who care for them.”
In addition to Kindergarten Hudson was invited to be on a flag football team with first and second graders. Our neighbor is a coach and he knows how much Hudson loves football. And maybe that’s why he invited him to sit with the players during games and got him a #9 jersey. In a world with people like Brock Turner dad’s, we also have Dad’s who are teaching their kids that competition isn’t the most important thing. Now this coach may have only done this because he knows how much Huddie loves football. But I like to think he also saw an opportunity to teach his children something too. To teach his children some things are more important than competition. Acceptance and Respect. I’d like to think he’s changing the world just a little bit. I’d like to think the chance Hudson will be the victim of violence just went down. But I wouldn’t even stop there. I’d like to think this lesson translates into something more. How will this impact them as they grow up? Sure they’ll think about disability differently. But in a world which lately is seemingly full of misunderstandings, fear and a lack of respect which has led to violence, rioting, and division I’d like to think these children will know how to approach these situations. With acceptance and respect. I’d like to think inclusion is changing the world and how we look at situations. It’s teaching children how to deal with differences, how to navigate people that are different than you. How to listen when they can’t speak for themselves. It teaches them how to troubleshoot playing with someone who can’t play like everybody else. It teaches them to search for common ground and to search for the similarities rather than the differences. It’s a world in which I dream about existing one day. And inclusion is really the step in that direction. Whether it be on the field, in the classroom or elsewhere in the community.
PS he’s doing amazing since his surgery! We’ve been able to double the rate of his feeds so he’s down from being hooked up to a feeding pump for 18 hours per day to 9 hours with hopes of continuing to decrease it more and more!
That’s what I want to change the name of this blog too. A Mamas Challenge. Because this blog is about Hudson, but it’s always from my perspective. Hudson can’t talk and he can’t write, so I share with you from my perspective. I’m fully aware that this makes this blog biased. I don’t pretend to know what it’s like for Hudson nor do I have any idea what it’s like to live with a disability. Hudson hasn’t known heartache like I’ve shared with you here nor has he known the gamut of emotions I’ve gone through as his mom. It’s me whose challenged.
I find myself sometimes profoundly sad when I see him watching the other kids running and playing without him. At those times when I see him watching the other kids from afar I remind myself to look at his face. And when I see his face I see nothing but joy. He’s happy to be watching the other kids laugh and play, even from afar. He doesn’t know any different. Hudson is not challenged. I am.
I’m challenged to not project my own emotions onto him. He is happy almost all the time. He’s the happiest kid I’ve ever met! One day he may pick up his speech device and proclaim he’s sad that he can’t run with the other kids and that he feels left out. And on that day I’ll sit and cry with him, but not before.
Scott and I do our best to create opportunities for him to interact with other typical kids and we do our best to include him, often at the sacrifice of our own bodies. Arms shaking, backs aching until we just can’t hold him anymore. As he’s gotten bigger it’s become harder and harder. We’ve had to stop because we aren’t strong enough to keep going. He’s just too heavy and he has gotten so long! Never have I felt weaker or more inadequate to be his mom then at these times. He counts on us to be his body and we are starting to fail him. He loves bounce houses. I hate them! We don’t get to sit and watch our kids play while we take a break on the sideline. We’re in the bouncy house – Hudson on our hip. Sweating. Wanna go to the beach? There’s no such thing as a wheelchair accessible beach so we carry him and help him lean out our arms to turn over rocks and look for crabs. He want’s to do it all!
My challenge is to make him as much of the community as possible and to let him experience the same things other kids his age do.
Now that Hudson is a big brother I’ve been able to watch his twin sisters grow and develop. SUCH a miracle to watch. But it also stings. At only 5 months old I see the girls easily do things that Hudson still hasn’t ever done or at least not easily. And yet they do it with such ease.
My challenge is to not compare him to anyone else and to be grateful. When things are hard I remind myself how lucky we are that Hudson isn’t fighting for his life in the hospital nor has he lost his fight. I’m part of a community he knows nothing about, where this is a reality for many CMV and PMG kids. He is here with us, healthy and strong and I squeeze him tight and I kiss him all over! And I remind myself of how great he IS doing.
In a few days Hudson will start Kindergarden in a General Ed classroom. (He really is smart and extremely social.). I bought all the school supplies. The notebooks, glue sticks, paint, pencils. And I almost lost it when I thought about how that notebook might look when I get it back at the end of the year. Will it look exactly as it does now? Will it be empty? I knew it wouldn’t be filled with his little thoughts and his first stories. I wouldn’t get to try and decipher his horrible yet adorable little misspelled words like I did with Addie. Then I reminded myself I really didn’t know how it would look. It will be a great big surprise! No matter what’s inside that little notebook I’m going to look forward to the surprise and I’m going to love it!
My challenge is to remain emotionally healthy for my children. To remind myself that I do not have the emotional bandwidth to worry about the things I cannot change. My challenge is to not set any expectations on him but to revel in the journey and the course he sets. I choose happiness.
Hudson does have challenges for sure and I don’t mean to downplay them but I’ve also become aware that I’m not sharing Hudson’s story with you. Hudson has his own story. His own life. One day I hope he can share it with you too. In the meantime I’ll keep sharing with you what I can. I’ve found that having a blog for Hudson has brought a lot of understanding from the people our family interacts with. See challenge #2 – making him a part of the community. Thank you for being a part of his community! Love you all.
If we are friends on facebook then you already know that our favorite little “tubie” has had some serious issues with his feeding tube. The end result is he’s had 7 replacements since Christmas. 7!! Each replacement requires a visit to the hospital to Intervention Radiology. This process usually only takes 15-20 minutes but it’s extremely traumatic for Hudson. My mommy heart crumbles every time I have to hold his hand through another bout of inconsolable screaming. I stupidly stroke his hair while simultaneously watching the Dr. feed wires and tubing in and out of his stomach hoping that he FINALLY gets it placed properly so we can unstrap Hudson from the table and I can swoop him up in my arms and get him out of there!
So what’s going wrong? His feeding tube is called a g/j which means he has one port but two valves. One valve goes into his intestine and one into his stomach. (I apologize for those of you that already know all this but we get a lot of questions about this so I wanted to explain again.) The j-portion that goes into his intestine is 30cm long and it keeps coming out of his intestine and curling up in his stomach. Actually, a few times it’s gone all the way up into his esophagus and once I even saw it in his throat!!! Freaked me out because he was choking and gagging on it. We’ve been to two different hospitals. We’ve tried three different tube types. We’ve tried different tube lengths. He’s been in the hospital 4 weeks in a row with the same issue before we decided that he’d had enough. As a last-ditch effort we had them put just a g-port in to give him a break from the hospital. A g-port sits just inside his stomach wall so there’s no chance it would curl up anywhere, plus it can be replaced at home by us if anything happens. It was a long shot that he’d tolerate feeds into his stomach but worth a try. The problem is the kid vomits. Every day. Multiple times per day. Since the day he was born. And no one can figure out why. Right now he’s losing about 1/3 of the volume of his food and he’s started losing weight. But honestly, he’s doing better than he was 2 1/2 years ago when he didn’t tolerate ANY food in his stomach at all.
So the plan?? The plan is to order him an Upper GI so they can look at his anatomy again. They think something in his anatomy is causing the tube to keep getting pushing out of his intestine. Then, we will meet with a surgeon to discuss the options. Bottom line is all the options require some sort of surgery and there is no one option that is guaranteed to work. They all have downsides. So for those interested, here’s what we are looking at . . .
- Perform something called a Fundoplication where they twist the top of the stomach and sew it closed, basically preventing food from exiting his stomach.
- Pull out tube, let site heal and then put a new hole in stomach lining that points back down towards his intestine.
- Leave current site and put in second port that goes directly into the intestine. Leaving him with two open wounds to care for.
- Widen the space between his stomach and intestines (the pyloris) to cause food to empty faster into the intestine
In the meantime, his Dr. wants us to power through the vomiting. Even though it’s messy business and he’s losing weight, he believes its better for Hudsons psyche to not have to be taken to the hospital and tormented every week. So that’s what we’ll do. I just hope by the time he starts Kindergarden we’ll have this figured out. I don’t believe his peers will be as kind when it comes to stuff like this.
Thank you to everyone whose been praying for him and sending kind words of encouragement. I know we’ll have a plan soon. We can only hope we get good information from the surgeon and we make the right choices for him. We just want to be able to feed him. It’s surprising sometimes how something that should be so simple that most take for granted is sometimes so difficult for others!
On all other fronts Hudson is doing amazing!! He is as busy and curious as ever. It’s exhausting, but also exciting to see him assert himself. Because he usually has plans. As he gets older his ideas of what he wants to do get more complicated and he’s not yet sophisticated enough on his AAC to tell us so for those activities we revert to pointing and eye gaze. He’ll usually point to the person he wants to assist him and then towards the activity. If it’s in another room he’ll direct you there turn by turn. He knows exactly where all his toys are hidden in the house and he’ll get you to find them for him! One thing in particular that surprised me recently has been him asserting his independence. When I’ve tried to assist him by holding his hands or his knees while he’s sitting on the counter, for example, he’ll push my hands away. To my huge surprise he’s also been requesting to sit on the big potty in public restrooms. Not only that but he wants to sit there by himself!! He’s figured out how to counter balance himself and if I try to help him he gets upset and pushes my hands away. It’s really encouraging!
I feel like it’s a very exciting time for Hudson. We’ve all come to realize that his language comprehension is amazing. There’s not much he doesn’t understand. Language expression, however, is something we continue to work on. It’s so crucial that he be able to use his AAC to let us know what he wants and needs. On that front we’ve signed him up for twice weekly speech appointments over the summer. It’s also going to help prep him for Kindergarden too. Almost his entire IEP was based on his ability to use his speech device to demonstrate he knows his colors, numbers, letters, etc. But more importantly he has complicated things he wants to express!
I hope to write again soon – the last 4 months have been a blur!
I’ve thought a lot about the birth of Addison and Hudson the last few weeks probably because it’s almost time for me to give birth to the twins. So it seems appropriate that I’d choose now to share with you the story of Hudson’s birth. It’s a short one.
The thing is Hudson came into this world ready to rock ours. I just had a feeling in my gut that he’d be born quickly. I imagined having him at home in the kitchen with a 3 year old watching. I asked to be induced and so the day before his due-date we went into the hospital. Best call ever!
To induce labor they first gave me a pill. I had a bad reaction to it with Addison but they said “oh that would NEVER happen again”. Well it did. 20 minutes later he went into distress and they stopped labor. I begged my Dr “please just break my water – I promise I’ll go into labor”. Finally she agreed and then she left. I remember her saying “I’m three minutes away – just across the street. If anything happens I’ll be right here.” She didn’t make it to Hudsons birth.
20 minutes after breaking my water I was allowed to get off the bed and I got up for a bathroom break. I had two BIG contractions and I thought THIS IS IT! I was so excited it was starting – I was imagining a similar birth to what we had with Addison. It was beautiful and Scott was at the foot of the bed and he announced the sex in front of everyone. Ha – no that’s not how this story goes.
So I go to the bathroom and low and behold I scream “It’s a head.” My mom thinks I’m joking but then once she gets to the bathroom she starts yelling for the nurse. My mom is now in position to catch the baby and I’m holding myself up off the toilet by the grab bars on the walls. The nurse calls my Dr quick and then all these nurses rush in with towels that they throw all over the bathroom. My mom got pushed into the bathtub somehow and Scott was peeping in through the bathroom door. He was responsible for announcing the sex so he was trying his best to check out the baby parts through all the commotion. “It’s a boy!” he announces about 2 minutes later. I remember thinking to myself in a panicky voice “A boy? Holy @#$# your telling me I just had the baby?? On the toilet!!” He looked SO much like Addison! I’m pretty sure I was in shock. First of all, I ‘d just had a baby on the toilet after two contractions and second, couldn’t figure out how I’d just given birth to Addison??
Hudson’s fast birth meant he had a lot of bruising on his face. At least that’s what everyone told us. One nurse said “when they are born that fast it’s like hitting a brick wall – I’m not surprised he’s bruised.” About 10 months later we learned from infectious diseases that “bruising” was actually called Petechiae. He was actually covered in hundreds of broken blood vessels, which should have been the first clue he was born extremely symptomatic for CMV. Had the staff been aware of CMV and it’s symptoms Hudson could have been given anti-viral medications. I also believe his fast birth was because he had a small head – at four months old we got a label for that called Microcephaly.
Pretty soon it seemed the story of Hudsons birth had spread and so his nickname became Baby Bullet. “So this is baby bullet” the new nursing shift would say when they walked in. Multiple people wanted us to change his middle name to John (funny – but no, we did not).
Now being pregnant again I’ve also realized I probably have toilet PTSD. I’ve gone into labor and delivery twice now with pre-term labor and sitting on those toilets is seriously terrifying! Even Addison yelled at me once – “Don’t go in there – you’ll have the baby!”
Hudson has not stopped surprising us since. His birth was truly the beginning of this wild and wonderful ride.
“Motherhood is about raising and celebrating the child you have, not he child you thought you’d have. It’s about understanding he is exactly the person he’s supposed to be. And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.” – The Water Giver
I was also going to write how happy we were that he hasn’t had any seizures since that first night in October. But that blog post is now sitting in my drafts. And I guess I jinxed it because about 6p tonight while he was watching football (his favorite thing in the whole world) he fell forward in his wheelchair and closed his eyes. We couldn’t get him to open them and when Scott picked him up his head just rolled backwards. To anyone else it would have seemed like he was just tired, unless you knew his nightly routine and knew this wasn’t normal behavior for him. What was going on?? Was this a seizure?? Scott held him in his arms on the couch but he still wouldn’t wake up. We tried calling the emergency room at Mary Bridge to ask them what to do but in the heat of the moment couldn’t get through so we decided to just give him the seizure rescue med. So we laid him flat on the floor, his eyes still closed. The med goes up his nose – half in one nostril and the rest in the other. About 30 seconds later his eyes opened wide and he was back, coughing and vomiting. And we knew. We knew for sure that it was a seizure. In all it lasted about 5 minutes. 5 very long minutes.
And then the tears came – the ugly cry kind. So many emotions encased in those tears. Our family has been in the emergency room 5x in the last 5 weeks (3 for Hudson and 2 for me due to pre-term labor). After Scott and Hudson left for the emergency room I just fell apart. Sometimes it feels like it’s just too much. Sometimes, but not often, I start to feel overwhelmed and defeated. What if these seizures just keep getting worse and they introduce medication that makes him lethargic all the time? What if they keep happening and his brain gets so much more damage he regresses? What if I slowly start to lose him? And the spiral began. But then something brought me back – some auto-pilot in my brain took over and said “pull up! pull up!.” And instead I focused on all the things I was thankful for and grateful for. And that list is MUCH longer. And finally the tears stopped. LOVE overpowers FEAR.
Hudson is on his way home from the emergency room now. We are very happy he wasn’t admitted overnight. They just gave him a high dose of Keppra to keep the seizures away tonight and then tomorrow we increase his current meds. I was really happy that they don’t want to introduce another seizure med. Those meds are nasty and the less he’s on the more of our little boy we get to keep. So I wait for him to get here and as I wait I sit down to write this because it helps me process. So thank you for reading about these ups and downs. I REALLY do hate seizures but I sure do love this little boy!
The Open House went GREAT!! Here are some before and after pictures of Hudson’s now accessible home!
BEFORE . . . Hudson slept on the second floor of the house. That meant a lot of daily trips up and down the stairs carrying him. (He still doesn’t sleep through the night so those trips carried over into nighttime too). He didn’t hardly fit in a bathtub laying down anymore and washing him in a shower was unsafe. (Imagine holding a 30 lb. child covered in soap – yep, was a disaster waiting to happen). We couldn’t roll his wheelchair in and out of the house so we had to carry him and chair separately. Downstairs we had an office, powder room and small hallway that would become his bedroom and bathroom.
AFTER . . . The biggest issue was we needed him on the main floor. We also needed ramps so we could get him and his equipment in and out of the house. We needed an ADA bathroom that included a toilet he could roll up to with grab bars, a wall-mounted sink and a roll in shower. And all of it had to consider he was going to grow in size and we needed it to work for him when he was a teenager or possibly adult. That meant 3 foot doors and enough space to turn a power wheelchair around. We also needed a place to store all his medical supplies that were scattered around various other places in the house.
Some people are simply amazing! It’s hard to believe someone you don’t know would do something for your family just from the goodness of their heart. It is hard to believe, but sometimes it happens. I know because it happened to us!! It all started when Grandma Pam had an idea.
Only a few months earlier we brought Hudson’s wheelchair home. Shortly thereafter, we realized we couldn’t get him in or out of the house in the wheelchair. At the same time, he was getting longer and heavier and carrying him up and down the stairs was becoming difficult. He was also as long as the bathtub was and we knew soon we’d have to figure out another way to bathe him. We were coming to the realization we wouldn’t be able to stay in our house. It was heartbreaking. This was supposed to be THE house. The house and the neighborhood the kids were supposed to grow up in. This was the last vestige of our dreams for the future and yet one more thing we were going to have to give up.
But like I said, Grandma Pam had an idea. Her motto being “It Never Hurts to Ask,” she wrote a letter to the new builder in our neighborhood, Soundbuilt Homes. She thought maybe the builder would consider building an ADA (America’s with Disabilities Act) house in our neighborhood and we could then sell our house. That way at least we could stay in this neighborhood with all our friends that have been such a good support network. She really didn’t expect to hear back.
A few months later in March 2015, we got a call from Gary Racca, owner of Soundbuilt Homes. He wanted to meet us and see if there was anything he could do. No promises. In the end, we couldn’t afford to buy one of the new houses. Housing prices have gone way up since we bought in this neighborhood. But, after taking a tour of our house Gary showed us we could actually stay in our house considering our requirements. Our requirements were that Hudson was downstairs with an accessible bathroom and that he had ramps to get in and out of the house. Just knowing we might be able to stay in this house was a huge gift and a huge relief!
Gary then mentions he has some great guys that work for him and
some might donate their time. His vendors may be able to donate some of the materials too. The rest he’d give us a quote for. It was an awesome opportunity!! At the same time Scott and I were nervous – how much was this going to cost?? Scott and I both work, but when we moved into this house we hadn’t budgeted for the medical bills, out of pocket therapy, my Feldenkrais training and me going down to part-time.
The very next weekend Gary and his Superintendent, Will showed up at our house to build a ramp in the garage. We just sat in the garage and watched in awe. We were SO excited!! Just that alone was going to help SO much!! In one weekend we already had a ramp!!
The next week Will stopped by to tell us they had luck getting an 8 foot sliding door donated for access to the backyard. A few weeks later a concrete pumper truck that was in the neighborhood made a stop at our house to pour a concrete ramp into our backyard. This new access into our backyard required new siding, a wrought-iron railing, new rain gutters, a beam, insulation, etc. etc. Still no quote for any of it.
Then came the best part!! Downstairs we had an office, powder room and small hallway by the front door. All of that, we learned, could be turned into a bedroom and ADA bathroom for Hudson. We just needed to come up with the design. Uhmm . . . design? I had no idea. I did research online but clearly didn’t have a clue. All I knew was whatever we did now we didn’t want to have to redo in 10 years. We needed these rooms to work for him as a teenager and potentially as an adult. So we researched and talked to other families with older kids and then my Dad and I came up with the plans.
Gary let us know we’d need a lot of tile and it was probably going to be expensive. “I’ll let you know when I get a quote” he repeated again. In the meantime, let’s take down some walls. SO SO SO EXCITING!! Just the thought of not having to climb the stairs multiple times in the middle of the night was exciting!! So the bathroom and hallways were completely demolished. The wall separating the two had to be moved back one foot so that he’d have enough room to turn around a power-wheelchair if he ended up needing one later. It was exciting and terrifying at the same time!! Was this really happening?? “It never hurts to ask.”
Over the course of 4 more months, workers continued to show up at our house and Hudson’s room and bathroom came together. Hudson liked to watch – he liked the sharp noise of the nail guns and the thud of the hammers. Will continued to supervise all the work done and he came up with some ideas that made our design even better. He always had a smile for Hudson and we were always glad to see him. Hudson’s room was HIS project.
Hudson’s room was finished in September and we moved him in immediately!! We could not wait to have him downstairs!!! It has totally saved out backs! He also has a medical supply closet – with all his medical stuff in one spot! But my favorite favorite part is his roll-in shower. Bathing him is SO much easier – I can fit in the shower with him and easily and safely bathe him. It’s wonderful!! As a caregiver to someone like Hudson now and in the year’s to come these improvements are HUGE for his quality of life and ours. Absolutely huge! It has been such a load off to know we can stay in THIS HOUSE with him. We are so thankful to Soundbuilt Homes, Gary Racca, Will, all the vendors who donated materials and all the subcontractors who donated their time. SO thankful for their kind hearts, their quality of work and their professionalism. Hudson room is gorgeous!! I mean GORGEOUS!! His room fits with the rest of the house. They even put wood floor in his bedroom so he can wheel around everywhere in there. And tile. Tile everywhere in his bathroom. And the craziest part? We never did get a quote. People just started showing up at the house and they never stopped. I’m pretty sure that whatever Soundbuilt didn’t get donated they covered. Why in the world would they be so nice to us? It’s almost unfathomable. Gary said at our first meeting that he has two healthy children and that if he can give back he would. Is that all the reason someone needs to be a wonderful person? Apparently. He never asked for anything in return.
How do you thank someone like that? We’ll never be able to properly thank them. What we decided to do was hold an open house – it’s Sunday, November 22nd from 2p – 4p. I purposefully didn’t show the “after” pictures here because I don’t want to spoil the surprise! Scott and I wanted to do this because we wanted to meet everyone that worked on Hudsons’ room and thank them in person. We are also inviting our friends, family and neighbors to the unveiling. We are so thankful to live in this community. We are just blown away by what Soundbuilt has done for us. It’s amazing. And a big thanks to Grandma Pam who set this all in motion. “It never hurts to ask.”
WE GET TO STAY IN OUR HOUSE!!!!
PS EVERYONE is invited to the open house that wants to come see! Please do! Message me privately and I’ll send you our address!
The night of the 28th we were forced to take another fork in the road. Seizure Monster Road. Except I wouldn’t even call it a road – more like an alley. A scare the crap out of me alley. If you know me at all you I’m not easily intimidated, but this road scares me to death!!! Let’s just start with a conversation I’ll never forget as long as I live. When Hudson was diagnosed we asked his neurologist if he’d have a normal life expectancy. We were terrified to ask and terrified to hear the answer. “Yes. . . “as long as he doesn’t develop seizures – if he develops seizures then we don’t know.” SEIZURES SUCK!
At 9:15 I heard Hudson on the baby monitor make weird whining noises and grinding his teeth excessively. Eventually he started to cry so I went to console him and put him back down. I picked him up but he didn’t calm down. He continued to cry, flailing his head back and grinding his teeth. I asked him what was wrong. Open your eyes Hudson, I said. I turned on the light. My heart pleaded with him. “Open your eyes”. He just cried and flailed his head back. I knew this wasn’t right and we’d been schooled by his neurologist that anything abnormal could be a seizure. So we called 911. An ambulance and EMT show up a few minutes later. He had 6 men in his room and he still wouldn’t open his eyes or wake up – he was acting passed out. His vitals were good – they just thought he was tired, but better take him into the ER just to be sure. Scott and I were sure we were overreacting now. (Found out later the sleepiness was part of the postictal state of a seizure).
I stayed home with Addison since I am pregnant with twins (surprise!). They hooked Hudson up to an EEG and at 2a Scott called to tell me they saw the seizures. I hear the words “administering rescue meds and then Keppra” and my heart dropped. Damn this fork in the road.
I needed to hug someone so I went up stairs and pulled Addison into my bed to cuddle with me. As soon as I did that the flood gates released so I left quickly to cry somewhere else. Stupid. I choose Hudson’s bed. The bed he should have been sleeping in. I pulled his blankets up to my face and just balled into them. I wanted to scream NOOOOOO!!!!!
The thing is I know too much about this road. 90% of the kids with his diagnosis are already on this road. I’m familiar with the struggles they’ve faced. I know what can happen – as he grows older his brain will change and the seizure meds may stop working, so we’ll try new meds with worse side effects. The seizures may become uncontrollable. I may have to watch him slip away from us while each seizure damages his brain more. He may regress. I may wake up one morning to find he’s left us in his sleep from the seizure we didn’t know about and couldn’t stop. It’s called SUDEP and its more common than SIDS. I’ve never been so scared for him in my life. SEIZURES SUCK!
I love Hudson so much – I love everything about him. Sometimes I think if I could take his disability away from him I wouldn’t because he wouldn’t be the same boy. I love THIS boy. Everything about him. If the seizure monster takes away his sweet personality I swear I’ll lose my mind.
So, that it’s. That’s what I’m afraid of. This is what seizures mean to us. That said, it’s not gonna go down like that. I always knew if this happened we’d try Cannibis. At the hospital I told the neurologist we wanted to start with Cannibis, before Keppra. He just smiled and I was sure it was a “yeah, your one of those crazy mommies” smiles. “Nobody starts with Cannibis he said. “You try that after the meds don’t work. I said “Yeah, I know that but we want to try it first.” Again he gave me the “ah, your a REALLY crazy mommy” look. (which of course I am). Very shortly I realized that smile was not what I thought it was but was because he happened to be leading the first federally funded Cannibis trial and he wanted to work with us on the dosing! Find your own grower he said, and I can help make sure the dosing is right. We’re all in here!
The good news is the seizures are controlled right now, and we caught them quickly. During our hospital stay we learned his seizures are related to sleep so they come back at bednight and naps. If we did nothing he’d have more every night. (He had three more seizures at the hospital that night – generalized, focal and subclinical types.) So we are leaving the hospital with a prescription for Keppra. The next few months we’ll be learning a lot more. It’s a learn as you go sort of a thing, just like everything else on this road.