When you first entered our lives you took over everything. All of us. My son, TJ, obviously, but also his brother, Peter, me and his dad, Sean. You controlled everything. But thankfully, over time and with a lot of research and learning, you’re now just another part of our lives. You’re no longer all encompassing. You’ve helped us become a stronger family and better parents. You’ve brought some wonderful people into our lives. You’ve helped us to learn not to take anything for granted and that even the smallest of accomplishments is cause for celebration. You’ve made a lot of things clearer for us. You’ve helped us separate the things that really matter from the things that simply don’t.
We’ve weeded a lot out of our former lives to make room for you. You’re messy sometimes — really messy — but there are lessons for all of us, even during those times. And finally, you’ve helped us understand both of our boys even better than we would have otherwise.
You’ve been a troublemaker, autism, but you’re also a gift in so many ways. And you’re a part of all of us forever. Just a part — you’re not everything. But for that part, I want to thank you for bringing out the strength and power in all of us Jordans. We’re a mighty force to be reckoned with because of you!
For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
This is who I am, and there’s something I want every parent/family member and even kids with cerebral palsy to know…
First of all, to the moms, dads or anyone who raises a child with complex special needs: You are truly amazing! I know for a fact that I wouldn’t have gotten as far as I have without my family. Your child will need you every bit of the way. I bet this isn’t exactly how you expected things to turn out, but if you have come this far — then you can do anything, even if the obstacles seem insurmountable. There’s great strength to be found in the human condition.
There will be days, terrifying days, where you’re uncertain and feel like crumbling against the weight of it all, but I encourage you to hold on just a little bit tighter to each other. Don’t alienate yourselves or try to face everything on your own. In the face of great difficulties, you’re strongest as a unit. Moms and dads, try not to neglect yourselves for the sake of your children. They will need you, but you have to be healthy too. Remember that in your child’s eyes, you’re the industrial strength super glue that holds the fabric together. As the parents, you guys are a team, so take the time to go out on dates and spend time together alone. Not only is this good for you guys, but it expands your child’s life as well by introducing other people into their world. Also take special care in spending time with your other children. They need to know and understand they’re just as important and special and worthy of being loved.
Don’t worry about what your child isn’t doing — just focus on right now. When I was growing up, I’d like to have thought that my family had some sort of idea or fantasy of what my life could have been like — and there were nights where I went to bed worried that I’d disappointed them somehow. Now I know this wasn’t true. Every day that your child is here is nothing short of miraculous. They’re perfect, despite all the challenges they’ve faced. Celebrate that! Dream big for them because you want them to have opportunities like every other kid. But focus small. Revel in a smile or word or productive therapy session. It makes us so happy to see you happy. You’re truly a team of amazing individuals.
Now, there’s something I want your child to know. If they’re ever told the phrase, “I just don’t think that it’s possible,” then I encourage you to smile,and maybe even laugh. Nobody knows what your child is or isn’t capable of. Even if the victory may seem small, a victory is still a victory. Never give up hope because at the end of the day, that is what carries us through. At the time of my diagnosis, the first thing the doctor had said was to expect nothing of any great consequence. So in spite of his words, my family and I expected something. At the time something was unclear, but something is completely different from nothing.
I’m happy to report, that since that day, I went on to be placed in mainstream school, graduate high school with full honors and will someday hope to have a successful and extraordinary life. It’s good to set important goals for your child and support them in achieving them because you never know what their exceptional lives hold. After all, they were raised by exceptional parents.
Never give up because there’s a whole world out there. And no footprint (or tire track) is ever too small.
Almost three years ago, I was going through two big changes in my life. The first was one many people go through: I’d just graduated from high school and was preparing for move-in day at the University of New Hampshire. The second was a bit different: In college, I’d be using a power wheelchair for the first time. So during my last summer vacation before college, my parents and I picked a day to visit a local store that sells wheelchairs, so I could try out some chairs. I was ready to learn all about the wheelchairs so I could make a good decision.
I wasn’t expecting to learn something about them that would change my life.
We went into the store and met the salesperson who would be helping us, and she started showing us the various kinds of wheelchairs. I had no trouble driving any of them, since I’ve been playing video games for as long as I can remember. During all the driving around and switching between different chairs, there was one wheelchair that kept catching my eye. It was different from the others because it had a weird metal cage thing attached to it, right in front of the footrests, and next to it was a soccer ball that looked twice the size of a normal one. I didn’t really know what to make of this, but as a big sports fan, I was definitely interested. At some point, I asked the salesperson what the chair was for, and she explained that it was for playing Power Soccer, a sport designed specifically for power wheelchair users. Even better, she then told me there was a team based at the University of New Hampshire. What a coincidence, right?
The existence of a sport played in power wheelchairs was significant for me in a couple of ways. At that time I’d become a huge soccer nut. I watched soccer, followed soccer news, played soccer video games, and now I had the chance to actually play soccer. This was also great because, due to the nature of my disability, I’d played on sports teams since I was old enough but had to stop when I was 12 because it was too difficult. Now I could play again. It was exciting. It gave me something to look forward to once I started using a wheelchair, which made it easier to make the transition.
Soon after that day at the store, I sent an email to the coach of the Northeast Passage Power Soccer team, and she put me on the mailing list for the team and told me they would have a chair for me to use when practices started. A couple of months later in October, I was playing my first Power Soccer games, and the team earned our first win of the season. We had a great group of players, and I had a blast, which is still true halfway through my third year on the team. In that time, I’ve played with and against many great people, from kids as young as 8 years old to adults older than my parents, with a variety of disabilities. Despite our challenges, we’re all athletes, even though we rely on an expensive combination of metal, wheels and electronics to get around. Hey, if NASCAR drivers are athletes, so are we! Power Soccer changed my life, and I think it changes the life of anyone who gets a guard bolted onto their chair.
Many people in power wheelchairs may think they cannot play a sport. Power Soccer is a great way for anyone in this situation, young or old, to prove that thought wrong. There are more than 60 teams practicing and playing across the United States and even more around the world. If Power Soccer sounds interesting to you or someone you know, I encourage anyone to get on a court and become an athlete. Powersoccerusa.org is a great place to find an existing team or learn how to start one.
Recently we had a free trial of one of the premium movie channels, and my husband decided to record “Harvey” figuring it would make a good movie for us to watch as a family. I was familiar with the story a little, but it wasn’t until we started watching it that I saw the parallels it had with our son, Griffin. It left an impression on me, one I wasn’t expecting.
Here’s a breakdown of the movie (Spoiler alert): Elwood is a grown man who has an imaginary friend named Harvey. Harvey is a pooka, a Celtic mythological creature that looks like a big bunny. Elwood walks with his arm around Harvey, introducing him to everyone he meets. Here’s where I start to think, Hey, this sounds familiar. Griffin had, well still has (although it’s quite deflated), a balloon he decorated and named Pooka. Although he named the balloon after a character from the video game “Dig Dug,” Pooka is not a name you hear every day or even every other day. Also, Griffin, like a lot of kids, had imaginary friends when he was younger. Well I should say he had imaginary siblings, whose names were Leo and Rusty. And then there’s Griffin’s name. Just like pookas, griffins are also mythological creatures.
Anyway, Elwood’s family doesn’t understand him and tries to get him to go into a sanatarium. They’re not sure what’s causing him to see Harvey. Could it be that he drinks too much? Or is it mental illness? Elwood is kind and harmless, inviting strangers to be his friend any chance he gets. Despite his gentle ways, his behavior embarrasses his sister, who feels she has to watch every move Elwood makes.
I’ve struggled with wanting to know what causes Griffin’s behaviors and how to help him, even after he was given the Asperger syndrome diagnosis. I hate to admit it, but in the beginning I thought there was something wrong with him. I would always be close by in case he said or did something someone might not understand (which frankly happened quite often). His behaviors embarrassed me because I believed they were a reflection of my parenting. All I wanted to do was help him, and it seemed like no matter what we did, nothing worked. I know I also cared way too much what others thought. To be honest, even now I sometimes still do. I do know now there’s nothing wrong with Griffin. He just needs time, things explained in a way he understands, patience and acceptance. He’s a complex, fascinating person. He views the world differently than most, and it’s pretty extraordinary. I see Griffin connecting with others in his unique way, and I can’t help but fill with pride. He’ll be your friend, and you’ll be better off for knowing him.
Now back to our film…
In the end, Elwood is given the chance to receive a shot that will help him not see Harvey. He tells his sister, Veta, he’ll take it if that’s what she wants him to do.
While in the waiting room, the taxi cab driver, who will be taking them all home afterwords, arrives. He starts telling Veta about the patients he brings to the sanatarium. “I’ve been driving this route for 15 years. I’ve brought ’em out here to get that stuff, and I’ve drove ’em home after they had it. It changes them… On the way out here, they sit back and enjoy the ride. They talk to me. Sometimes we stop and watch the sunsets and look at the birds flyin’. Sometimes we stop and watch the birds when there ain’t no birds, and look at the sunsets when it’s raining. We have a swell time. And I always get a big tip. But afterwards, oh oh… They crab, crab, crab. They yell at me: Watch the lights! Watch the brakes! Watch the intersections! They scream at me to hurry. They got no faith in me or my buggy. Yet, it’s the same cab, the same driver, and we’re going back over the very same road. It’s no fun. And no tips… After this he’ll be a perfectly normal human being. And you know what stinkers they are!”
After hearing the cab driver’s take on what happens to those who get the shot, Veta is filled with regret and rushes to stop the doctor from giving Elwood the shot. Veta realizes the beauty in who Elwood is, and she doesn’t want him to change. Elwood is accepted for who he is, and others start to live in his world. They even begin to see Harvey too.
This scene captures so much of the way I feel about Griffin. Every part of him is important. His differences make him the amazing, dynamic, complex, sensitive, observant, loving soul that he is. He gets so excited about things that many wouldn’t even notice. Yes, it can be hard as hell being his mom sometimes, but the rest of the time it’s absolutely magical. I would never give him a shot that would change him. I love that he’s so unique. I love living in his world. The tough times are tough, but I’ve learned that’s part of our journey.
In some of those tough moments I do wish there was a shot I could be given. One that could equip me with the ability to communicate and help Griffin. One that could help me help him understand and express his feelings in appropriate ways. One that could make me not care so much about what others think. Maybe I’ve already found the magic shot, the magic potion. Maybe it’s a combination of unconditional love, patience, never giving up, thinking outside the box, knowing that Griffin doesn’t need to be fixed — and faith!
If I changed any part of Griffin, he would be different, I would be different. He wouldn’t be who he is, and I wouldn’t be who I am. And thanks to Griffin, I can say I like who I am and who I’ve become since being his mom. I admit it can be hard being different. But I like that we’re not perfectly normal human beings, because… you know what stinkers they are!
A week after we received a pre-natal diagnosis that our unborn son had Down syndrome, we were told he also had an AVSD heart defect that would require heart surgery when he was between 4 and 6 months old. I was devastated — I could handle the Down syndrome, but the heart defect scared me. Would he even make it to 36 weeks? Would he die before we had a chance to meet him? I was so concerned about his heart that the Down syndrome didn’t seem to matter. I counted the days like minutes and the hours like seconds. Declan finally had heart surgery when he was 5 months old, and that was the easy part. He struggled to recover his oxygen levels over the next few weeks, having to be reintubated and fed only by NG tube. He slowly improved, and it finally looked like we were headed home.
Then, just when we thought we might get discharged, Declan had other ideas. On Saturday, he was taking bottles, on minimal oxygen and his meds had been reduced to discharge levels. They’d even given us his discharge prescriptions to have filled.
Then, on Sunday at 5:45 a.m., my cellphone rang. I recognized the number and knew even before I answered that something was up. The attending physician on the other end of the line said my son had desaturated around 5 a.m., and they had put him back on “high flow” oxygen. The good news was they were looking into options before reintubating him. His lungs were “cloudy” again, so they restarted the drip line lasixs (diuretics). They were going to see how he responded before moving further. He seemed to do fine the rest of the day — his lungs were clearing, and they reduced his oxygen a little. I was still recovering from the food poisoning I had on Saturday, so after a nap at home, we headed back to the hospital to check on him. He was sleeping peacefully, and the nurse said he’d held his saturation levels all afternoon. So, we went home and went to bed.
Then, as if I was Bill Murray in “Groundhog Day,” my cellphone ran again the next morning — at 5:45 a.m. The same number, the same voice on the other end, the same situation. Our baby had desaturated on the high flow oxygen so they put him on the “scuba” mask. This is one step short of reintubation. If the scuba mask was not successful, that would be the next step.
The fact that he desaturated again meant the meds weren’t working, so something else was going on. His cardiologist and surgeon both came to visit that morning before rounds. They’d reviewed all the data and agreed it didn’t appear to be a pH problem. They speculated about various other causes, as did the team on rounds. What everyone admitted, more or less, was that they really didn’t know what the problem was. A group of six (or seven)-figure salaries standing around speculating was not boosting my confidence.
They decided to send him to the cardiac catheterization lab (the”cath lab”). Here, they would look at pressures in the heart and lungs in more detail than they could see in an echo or X-ray. Dex would need to be put under again, so reintubation was necessary. We hoped to have an answer by mid-afternoon.
Since we had three hours or so to kill and because I was at my wit’s end, my husband convinced me to go get something to eat downstairs. We decided to sit on the patio and get a little vitamin D, while eating and waiting for my parents to arrive. Then, the strangest thing happened.
As I watched the patio doors, anticipating my parents’ arrival, a woman and her two daughters walked out. As they came toward us, I couldn’t help but notice that the younger one had Down syndrome. Right as they walked by, I commented on how cute her daughter was, then asked her if she had Down syndrome. The mom, Brooke, looked at me and said yes. I told her we had a son with Down syndrome, and she asked if we were here for his surgery.
Then, as if Brooke and I had been friends for years, she went on to tell me their story. Her daughter, GiGi, is 2 years old now but had a full AV canal repair at 5 months, just like our son. GiGi also had all kinds of complications after surgery, including pneumonia, and spent 56 days in the cardiovascular ICU (CVICU). But unless you saw the scar on her chest, you would never know now. She was walking all over the patio, exploring and chasing her big sis around, like any other vivacious toddler. Easton, their 5-year-old daughter, was the ever patient big sister, just like our daughter, Teagan. Chris, their dad, appeared a few minutes later. He scooped GiGi up and tickled her. If my husband, Scott, hadn’t shaved his beard off last month, you’d think they were brothers. It was like we were looking at a mirror image of our little family. As Scott later said, it was like a little angel walked through those doors to let us know everything was going to be OK.
Our Dex returned from the cath lab around 2:30 p.m. They discovered he had mitral valve regurgitation; his left ventricle was “stiff” from being overworked prior to surgery. This caused the blood vessels in his lungs to flood with blood, hence the cloudiness in the X-rays. The course of action was to put him on medication to relax the ventricle and see if that would reduce the regurgitation. If so, we could eventually go home on the outpatient version of these meds. The worst case scenario would be another open-heart surgery to fix the valve. There’s no in-between solution — it’s all or nothing. The doctors decided to move much slower with the weening process and give him plenty of time to react, so we were looking at at least another 7-10 days in the CVICU.
As as we left that night to try and get some rest, we told our night nurse, Larry, that our goal for the night was “no surprises.” Larry, a 30-year veteran in the ICU, agreed, and said, “Slow and steady wins the race in the cardiac unit.”
After, I decided we should experience the city and walk the several blocks to the North End for lunch. We found a quiet, family-run, Italian restaurant (Pagliuca’s) and sat down for a great meal and wonderful service. When I asked for the bill, the waitress said “No bill, you’re all set.”
I protested, saying it was kind but unnecessary. A part of me was thinking, “We don’t need anyone’s pity! We are so far beyond that…”
She insisted. She said a regular, who would remain anonymous, had watched us walk into the restaurant — Annie with her cane — and he just wanted to do something nice for us.
I asked if I could buy the person a glass of wine or coffee as a thank you.
As we approached the front door to leave, thanking almost everyone in sight, the same waitress came up and stuck something in my pocket and said, “He also wants you to buy something nice for her at Christmas.”
I thought to protest again but was overcome by the kindness. It was not pity at all — just someone who felt the need to do something nice at that moment. When we got outside, I found a $100 bill in my pocket.
This is a photo from the same day…
We’ve pledged to pay it forward, in story and in-kind, so that my own kids and many others will know: there are good people out there. Choose to be one of them.