I know it’s time for an update but every time I try to think about what to write I’m literally overwhelmed with thoughts. Should I tell you that he’s been practicing with a loaner power chair and how amazing he’s doing with it? How many different things he had to learn in order to maneuver it? Shall I tell you what a game-changer it’s been in terms of his social interaction and level of participation out in the world? Shall I tell you how it makes my life easier but also more difficult? Difficult because the world isn’t built for power chairs. MOST handicap parking spots don’t have 8 feet of clearance on one side or those spots are taken. Should I tell you how I parked in a spot and put out my orange cones I carry in the back of the car and someone moved them so I couldn’t load him in the car? Shall I tell you how I cursed under my breath and said to my self “Why does everything have to be so @#$#$@# hard!!!” I just want to take my kids into the store. Shall I tell you that he started adaptive swim lessons and how amazing the Y has been? Shall I also tell you how ridiculous the family changing rooms are that were supposed to be designed with the help of a physical therapist but are literally unsafe for a 7 year old in a wheelchair? Shall I tell you how I tried sitting him the bench and propping him up with my knee so I could give him a shower but he was so slippery that I was worried he’d fall. Shall I tell you how I cursed under my breath “Why does everything have to be so #%#@$%#@ hard!!” I just want to give my kid a shower!! Shall I tell you how we almost didn’t go back until another family showed us where the changing table was for special needs kids? Shall I tell you how these don’t exist in any bathrooms anywhere we go so it’s impossible to change his diaper outside of the home so I have to change him in the van?
Shall I tell you how I love this child fiercely and how happy his sweet smile makes me? Or shall I tell you how difficult it’s become to do simple things like putting his pants on and I truly wonder how I’ll care for him as he gets bigger and bigger. Shall I tell you how I’ve started thinking about the future and wondering how I can plan to take care of myself and my health because I’m going to be a caregiver for the rest of my life. How terrifying it would be to have someone else care for him so I have to stay healthy for as long as possible? Can I tell you what a big responsibility that is. Shall I tell you how we came in for a routine EEG yesterday and that he had two grand mals? It was his first seizure in 4 months. Should I tell you how upset he was when they put the leads on him or poked him in the arm to draw blood and how he cried. Shall I tell you how I often have to help the nurses because I’m worried they are going to pull on his arm too hard and hurt him and that I feel more comfortable being the one to hold him still so I do? Do I tell you how I do it stone-faced because crying isn’t going to make this better for anybody? Or, shall I tell you how he went to a power soccer clinic this weekend and how amazing he did?
Shall I tell you how proud of him I was and how much he was laughing chasing after the ball? Can I tell you about all the many reasons that experience was so important for him to have? Shall I also tell you how I’ve realized he’s the “watch kid” at school? That when I brought his power chair to school for him one day to use at recess he went straight to kickball. The kids said “he can watch” – and so he did. And so I said “No, I think he wants to play – can he have a turn?” So he drove himself up to home plate. I turned up his speed to the highest speed possible and then his para kicked the ball. He hauled ass straight for third base. All the kids were screaming “wrong way!! wrong way!!” They all ran after him and alongside him and showed him how to run from first base to second to third to home. When he got to home plate they all screamed “Yeay!!” Shall I tell you how happy that made me and how my heart almost burst?? Shall I tell you how I WISH I had a video so I could watch it over and over again? Shall I tell you how I’ve come to the realization this doesn’t happen enough in his current setup at school and how I’ve been having multiple conversations with the special needs director about inclusion. Can I tell you how I’d like his whole life to be like that kickball moment and that’s what I’d like to work towards with at his school but that it’s going to take EVERYONE’s support from the paras, to teachers, to students, to other parents. So might I ask you all to model inclusion as well? Might I ask you bend down and say “Hi Hudson” and even give him a fist bump. Might you encourage your children to ask questions about Hudson or to ask me? Let’s have these conversations openly and honestly as if we were discussing the color of his hair. Please don’t rush your children along in hushed tones when they ask why he’s in a wheelchair. Don’t think I can’t hear you. Don’t think your child isn’t turning around the entire walk to the car because they are curious. Don’t think it doesn’t make his big sister upset every time it happens. Just stop. Turn around and ask your child if they’d like to say “Hi.” Model inclusion please – it’s going to take all of us to make this world a better place for Hudson. And if you get the chance to support accessible restrooms do it! Please! We aren’t alone in this – there are many many families like ours who you’d be helping make life just a little easier. To learn more please visit: http://universalchangingplaces.com/
This diet is intense. It’s absolutely worth it but it’s a lot of work and there are a lot of changes we’ve had to make. He’s still on a blended diet but his food has to be precisely measured on a gram scale. No more just grabbing a whole banana and throwing it in the blender. Now he can have 40 grams of banana which is about 1/4 of a banana. There are about 15 ingredients in his food and each has to be measured, then scraped out of it’s container. It’s a LOT of scraping. If you ever need a recommendation on a spatula you know who to talk to! Ketogenic diets are usually discussed about in terms of their ratios. Hudson is on a 2:1 ratio. That means for every 2 grams fat he can have one gram of carbohydrates or protein. That’s considered a lower ratio. Many kids are on 3:1 or 4:1 ratios. The lower ratio means he can eat more fruits and vegetables. What is he eating? A large part of his diet consists of Safflower oil, which is pure fat. He also gets avocados, coconut milk, protein powder, miso, hemp milk, and then a few different fruits and vegetables each day.
Anything that gets put on Hudsons skin also has to be carb free and most products have carbs. The website for the Charlie Foundation has a list of all the products he can use. Using the wrong lotion or soap could throw off his ratio and cause him to have a seizure. The other change is all his meds had to change to glucose and carb free pill form. He also has to wear gloves at school when he plays with play-doh because again play-doh has carbs and it could be enough to cause a seizure. We also check the ketone levels in his urine every other day to ensure he’s maintaining a high ketosis level.
It’s all worth it though. He’s gained 3lbs and it’s helping!! We noticed a difference within a few days. He slept really long those first few days probably catching up on sleep. He doesn’t have large bags under his eyes from seizing all night long. He’s been more vocal, more energetic and it seems he’s getting stronger. The staff at Swedish was impressed with how well he responded even in such a short time!
He did have three grand mals in one week but we know what caused them. One was after giving him Tylenol PM, which we didn’t know can lower the seizure threshold. The other two were because of a medication snafu. Overall the grand mals have definitely improved, if not stopped!!!! That’s check one. Check two was that clinically, he appears better. Check three was an EEG to see if the ESES at night has improved. Hudson has been at Swedish the last two days hooked up to an EEG. We were hopeful for good news based on how he’s been acting. However this morning we learned that his EEG still looks pretty bad. It’s bad enough that his neurologist was concerned it could cause cognitive decline. He has electrical activity 70% of the night. We left the hospital this afternoon with a plan to increase the ratio slowly from 2:1 to 3:1. Not the news we were hoping for, but that’s not unexpected as we were told it might take up to a year to dial this in.
Truth be told though, worrying about cognitive decline isn’t a bad downgrade from worrying about very long lasting grand mals that don’t respond to rescue meds. Before I went to bed I used to wonder if tonight would be the night we’d have to call 911 again. What was our plan if I had to go with him to the ER?? And if he has a grand mal please be one that we could at least stop. I am scared to death of him having one that we can’t stop and him end up in the ICU in a medically induced coma or worse. I feel like that was the trajectory he was on. Since a few weeks into the diet I’ve been able to ramp that anxiety down a bit to now just worrying about cognitive decline. And that is a downgrade I’d take any day!!
Tonight we are preparing for a four day hospital stay. Hudson’s seizures are uncontrolled, aka intractable. We’ve already tried 4 medications. I’ve been told the likelihood of them being controlled by medications at this point is very low. He is having a grand mal seizure about once per week. This week he had two and he had his first partial seizure at school. He also has something called ESES which means he goes into status epilepticus at night. He has brain activity about once per second. He’s not getting restful sleep so he’s tired all the time. His Emfit seizure mat is the only reason we know he’s having a grand mal – it causes Scott and I’s hearts to leap into our chest every time it goes off, but it’s also probably saved his life.
Hudson and I will be at Swedish where they will start him on the Ketogenic diet. They discovered in the 1920s that starvation for 10-20 days could actually reduce or eliminate seizures. Since that’s a horrible thing to put anyone through, shortly after they discovered that feeding patients high levels of fats and very minimal amounts of carbohydrates and protein mimicked starvation in the body, causing the body to go into a state of ketosis. The diet must be strictly maintained. His food will have to be precisely measured with a gram scale. I was told even one of his seizure medications has too much sugar in it and we’ll have to get a pill form that we’ll have to crush. Tonight I made his last batch of homemade juice from beets, oranges, carrots and sweet potatoes. I hate making that juice! It’s so time-consuming and such a mess to clean up. But as I made the last batch I was surprisingly sad!! There was a lot of love and work in putting together his blended diet because we started it when the GI doctors didn’t really support blended diets and it is SO healthy!! I always felt good knowing he was the healthiest eater in the house. This new diet is not going to be healthy. In fact it carries many risks and it requires him to have blood draws every 3 months.
Thankfully during our stay, he won’t be hooked up to any EEG leads so we should be able to leave our room. He’s not being put under, he’s not having any surgery and there’s no recovery to worry about. The week will be spent creating his new diet by slowly increasing his ratio of fats under hospital instruction. His blood will be drawn and the diet tweaked to make sure the levels of ketosis are sufficient. I will also be trained on everything. So why am I so apprehensive? Because there’s a 50% chance this won’t work. Having the Ketogenic diet in our back pocket was always a fail safe. If this doesn’t work then what? Continue to have my heart torn out of my chest when he comes out of a seizure and he looks at us between tears and we don’t know if he’s crying from pain or because he’s scared?? I can’t. He can’t. None of us can. I’m apprehensive because it feels like we’re playing our last real hand here. I’m terrified of this not working. I’m trying to focus on the fact that he has a 10% chance of his epilepsy resolving, but apparently my subconscious is subverting all attempts by making me dread this hospital stay more than any other we’ve ever done. The consequences of this not being successful seem huge.
PLEASE let this be successful!!
Sometimes I feel untethered, like there’s nothing to hold onto. Nothing to keep me steady. I’m just grains of sand on the beach. Every day the waves try to pound me down. Sometimes I’m strong but sometimes I shift and slide with the waves. Sometimes there are storms and sometimes those are hurricanes and I’m left just a little more damaged than I was before. I’d like to say I’m a better person because of the storms I’ve weathered. But when your in the middle of it it sure doesn’t feel that way. I had one of those moments recently. I was on vacation. What should be a relaxing family experience was absolutely exhausting. Hudson had been having grand mal after grand mal and we were trying to get his seizures under control – during our vacation. We decided not to let these seizures steal anymore from us so we made memories. But Hudson struggled and so I struggled. He wasn’t holding his head up. He wasn’t smiling or laughing. I saw him but couldn’t SEE him when I looked in his eyes. I felt like the seizures were literally stealing pieces of him and I couldn’t find him anymore. It was like the ocean literally pulled him underwater, tossed him about and I couldn’t find him. One morning I had a panic attack. I couldn’t breathe and had to lay on the bathroom floor. I cried and cried until I had nothing left to cry. I love Hudson so completely and fiercely so that the pain I suffer when he’s suffering is immense. Monolithic. This gig is really really hard sometimes.
Since vacation we’ve had some good progress with CBD oil but have also learned he has something called ESES which means he goes into status epilepticus at night. We also learned that because his grand mals last so long and he’s now resistant to rescue meds, he’s at greater risk of death. With ESES he’s at risk of developmental regression. He’s failed four seizure meds. Our next steps is the Ketogenic diet program. It’s hurricane season here.
More often though, I find myself shifting. When a big waves pounds down upon me I adjust by changing expectations, changing filters or changing perspective. When I found out this year that Hudson’s only involvement with his General Education peers was going to be a half hour in the morning, lunch, recess and specialist I was really disappointed. It wasn’t what I wanted for him. I wanted him to have a typical classroom experience, not hidden away in a private room. It felt like another blow. But I shift. I shift for the benefit of everyone. “At least they have the ability to give him the level of support he needs.” Or, “He’s going to be fine and this gives him the best chance at being his best self.” Or “He’s lucky to have this option.” I shift often. I shift at birthday parties when he gets left behind while the other kids run and play. I shift when he doesn’t get included in the little secrets they tell each other. And the thing is all this shifting is exhausting. Sometimes I try to prepare for where the waves might push me next but I can’t. I’m not in control of any of this, so I surrender to the waves and try my best to hold onto something. When I say I’m tired it’s not tired like you think it’s tired. It’s not just tired from not being able to sleep at night. The mental and emotional toll these waves take on a daily basis is exhausting. I have to stay on this beach so I have to play this game with myself. If I don’t stay on this beach I’ll get drug under by the ocean waves and it will be dark. Very dark. I have to stay on the beach where the light is. So I shift, I slide and I remain strong.
My only fear in sharing this with you is I don’t want you to get the wrong idea. The thing is I’m on a beach!! It’s absolutely gorgeous here!! I’m surrounded by beauty. You can’t separate the hard from the beautiful. They are co-dependent. There’s nothing more I like to do than listen to the waves of Hudson’s laughter or feel the warmth of his love every day. It’s an absolute blessing and I’m so grateful for all of it. It’s hard because I LOVE this beach SO SO SO much!!
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