February 15th is Angelman Syndrome Awareness Day. Last year on this day, I published a post on 15 Ways AS Changed Our Lives. Today, I wanted to share another personal glimpse at raising a child with this rare condition.
I love Owen very much, and I know that the Lord has a perfect plan for our family. That plan includes Angelman Syndrome.
It’s not a path I would have chosen had it been up to me. But, I am continuing to learn that God’s plans are better than mine.
However, even with my faith and the love I have for my son, raising a child with a severe disability isn’t always a walk in the park.
Actually, it’s hardly ever a walk in a park. It is a challenge!
Here are 15 specific ways I struggle with raising a child with Angelman Syndrome.
No one understands the ins and outs of raising Owen. Honestly, we don’t want them to understand. There’s only one way to truly get it, and that’s to have a severely disabled child.
But, Owen’s condition has become isolating. It’s really hard to go anywhere or spend time with friends when we know that there’s a good chance Owen will destroy something and eat it while we’re there.
His Pica is something that’s just hard to grasp, and really hard for us to stay on top of. He’s always on the lookout for something to put in his mouth, and I really think his arms have some elastic built into them.
Even when I think everything is out of his reach, he stretches just a bit more and proves me wrong.
I worry that he’ll grab someone’s hair or necklace and cause harm.
That means we’re constantly on guard wherever we are. It’s really hard to relax and enjoy time with friends or family when you have to watch every motion.
So we stay home frequently. Or split up for events, having either Bryan or I and a couple of kids go and the rest stay home. Because it’s just easier.
But it’s also lonely. And at times we feel completely isolated from the rest of the world.
Sometimes, no one else gets it either. They don’t understand why we don’t just bring Owen everywhere. It’s hard to explain the fear and worry that we have about bringing him to events.
When Owen was younger, we had such high expectations for him. He’s come a long ways, and definitely overcome many obstacles and done things doctors didn’t think he would.
But then 2012 came around. With three-week long hospital stays, horrible seizures, and the onset of Pica, we really thought we were going to lose our precious boy.
We let him get away with basically anything, because it’s really hard to discipline someone you think is on death’s door.
Unfortunately, our expectations for Owen also dropped that year. It was too hard to dream about the future when we didn’t know if he’d be there.
It was hard to think past the immediate medical needs and see what could be.
Since then, we seem to be on a roller coaster with expectations. We just start to get back in the groove and dream and then another medical emergency knocks us backwards.
It’s a definite struggle, and I’m not sure how to find the balance.
3. Making Medical Decisions
Owen can’t talk. He needs us to advocate for him in every area. And the responsibility is truly overwhelming at times.
The medical decisions we have to make for him could have severe consequences. A wrong decision could lead to death. And that’s a huge weight to carry.
I shared a bit of insight into this struggle in this post, when Owen was scheduled to get his VNS.
His surgery went well, and we haven’t noticed any of the side effects I was worried about. But, this type of situation comes up frequently.
It worked amazingly well for his seizures! So did the Modified Atkins Diet.
But, his behavior is horrible when he’s on a low-carb diet. That’s when his Pica started. It’s when he started peeing on everything.
And it got too much to deal with. So now he’s back to having seizures. And he still has Pica, but other behaviors are mostly gone.
I hate feeling like I’m picking seizures for him, but that’s how it feels.
It’s happened before–one of the sleep meds that actually worked decently when he was younger caused his seizures to spiral.
But I loved the sleep so much that we kept him on it longer than we probably otherwise would have.
Sleep or seizures.
Behaviors or seizures.
Trying to figure out what option is best is a huge struggle. So all we can do is pray, research, and do what we feel is best at the time with the information we have.
Are we making the right decisions? I have no idea.
4. Utter Exhaustion
I haven’t gotten consistent sleep on a long-term basis since Owen was born. And he’ll be 11 in May.
Now, I struggle with some anxiety about sleep. I feel that as soon as I head to bed Owen is going to wake up, so I might as well stay up.
I know it’s not healthy. I know it’s not good for me. But, it’s a struggle I have. I think others raising children with sleep disorders can relate!
We’ve tried to come up with a safe bed for Owen, but unfortunately the ones that many families use with their Angel kids are really expensive. And I’ve never figured out how to get our insurance company to pay for one.
If we leave Owen on his own, he gets out of bed. If his Dutch door isn’t locked, he gets out of his room. He treks to the kitchen and causes chaos. Or he opens the fireplace.
Now that he can open doors, I’m terrified that he’ll get outside one night and end up on the road.
Even when his Dutch door is shut and locked, I can’t sleep once he wakes up. He grabs the door and shakes it so hard, repeatedly. He’s strong and the movement is loud and vibrates throughout the house.
It’s impossible to sleep through that. So I get up with him.
Usually when I crawl in bed with him he’ll settle down and go to sleep. But not always. Some nights it’s a battle all night long to keep him in bed and quiet so the rest of the house can sleep.
5. Wait Lists
Owen has an appointment with a behavior specialist at the end of February.
It’s taken two years for that appointment to happen. I’m looking forward to it.
We’ve waited for specialists before, but never quite this long.
But juggling doctors and appointments in general is a struggle. Owen sees so many doctors, and there’s always a wait list to get in.
Even when his g-tube needed replaced because it was leaking and Owen had an acid burn from leaking stomach fluid, it took twenty days to get into the doctor.
That’s what happens when the doctor he sees only works one day a week. Several of his doctors have schedules like that.
Before his appointment, I took him to the ER and thankfully they were able to put in a temporary tube that didn’t leak so the burn could heal.
But, it shouldn’t take an ER visit to make it happen.
Waiting for doctors you need to see now is never fun.
Transporting Owen is becoming more of a challenge as he gets bigger. He’s learned how to escape from his seat belt by sliding underneath it.
Except he usually catches himself on the neck. So I wind up pulling the car over to keep him from strangling himself.
We’ve asked the insurance to provide a car seat for him, but they keep denying it because it’s not “medically necessary.”
Thankfully my step-dad runs a school bus garage. He was able to help us get a harness for Owen. So at least we no longer have to worry about him choking on our way somewhere.
But, then there’s the whole wheelchair thing. It can fit into the back of the Suburban (which is good because our bus isn’t very good in the snow!), but it’s heavy to lift it up there.
Oh yes, and the bus. We’d totally have a 12 passenger van if it weren’t for the chair. Because I’d much rather drive one of those than a bright yellow school bus.
It wouldn’t be as loud. And it certainly wouldn’t draw as much attention.
But there’s no room for a wheelchair in one. So I am thankful that we have the bus. It does great most of the year, and allows us to ride together.
My son Owen can’t talk. He hasn’t yet picked up any of the alternative communication methods we’ve tried.
And I really wish I knew what he was thinking.
Lack of communication is a definite struggle. When Owen is in pain, I’d love for him to be able to tell me what’s wrong. Or where it hurts.
I’d love for him to tell me when he has to go to the bathroom so I don’t have to try to just time it right.
I know how frustrated I’d be if I couldn’t express my needs and wants. If I had to rely on someone else to try to figure it out.
Because I don’t usually guess right the first time.
Like when Owen had an object stuck in his nose for the first time. Our pediatrician and I thought it was just a sinus infection.
Until the smell never went away after two rounds of antibiotics.
So we got referred to a specialist. Yup. Rubber band up the nose.
But if Owen could talk, he could have helped us pinpoint the real problem the first time. We could have treated appropriately right away and saved him weeks of discomfort.
Communication is definitely a challenge when raising a child with Angelman Syndrome.
8. People Ignoring Owen
I guess since Owen is in a wheelchair, many people seem to think he’s invisible. They think it’s okay to talk about him right in front of him.
Or just ignore him completely.
When my little sister came home from Christmas, I was almost in tears. Her boyfriend took time to go over to Owen, make eye contact, and talk to him.
He proceeded to play a clapping game with Owen and spent a lot of time with him throughout their entire visit.
But he is the definitely the exception. Most people just ignore Owen.
And I know–Owen can be hard to be around. You’ll have to keep your hair, jewelry, and clothing out of his reach. Because if he can grab it, he will.
So I understand why most people keep their distance.
But when someone doesn’t, it’s a sweet moment for my mommy heart.
9. Reacting to Behaviors
Owen pinches. He pulls hair. He’s climbed on top of the other kids and starting squashing them.
When Owen is going after me, I can usually deal with it. But, when he starts in on the other kids, it’s more of a struggle.
You see, when someone is hurting your kids, your first reaction is to fight back and stop the attack. But, when it’s another of your kids doing the hurting, I can’t even begin to explain the emotional struggle.
And when Owen’s behavior is even more dangerous–trying to stick his head into the wood stove, lunging towards the kitchen stove burner, chewing on an electrical cord, or any number of other things, instinct kicks in.
I don’t always have patience when dealing with behaviors. Sometimes it’s just a quick reaction, trying to stop something dangerous.
10. Constant Messes
I know–I have a lot of kids. Messes are a part of life.
But, with Angelman Syndrome, our messes take a different form. Owen loves to rip paper and finger-paint in any bits of charcoal that have fallen from the wood stove.
He crumbles food, smearing it all around.
And eats our couch, leaving it with huge holes to hide under blankets.
Our house is rarely clean, despite the time we put into it. As soon as we get something picked up, it seems there’s another mess.
Those messes aren’t the worst ones though. The worst ones involve bodily secretions. Pee all over the floor, with Owen trying to do pee angels in it. Or poop smeared all over from a poop party.
I’ve gotten more used to these types of messes over the years, but they’re still gross! And something that most people just don’t understand.
Owen was super scrawny as a baby. He weighed a measly ten pounds at six months of age.
But, thankfully he has grown over the years. I’m thankful he no longer struggles to maintain weight.
Yet, a ten-year old prepubescent boy is much heavier than a baby. He’s strong. And getting stronger.
I worry about the day I can no longer lift him and provide the care he needs. I don’t know when that’ll be, but I see it approaching.
12. Lack of Babysitters
Now with this many kids, I don’t anticipate that Bryan and I would get out often anyways. But, finding a babysitter for Owen has always been a challenge.
My parents keep him every once in a while, and I’m so thankful for the break that provides. Even with all the other kids here, it’s a definite break.
But, Owen is a challenge, and not many people want to try watching him.
13. Changing Traditions
When Owen was younger, we really enjoyed spending summer days at the lake with family and friends. We went out on the boat, let the kids run along the shore, and just had a great time.
But as Owen’s fascination with water got stronger, we quickly realized that we couldn’t keep doing this. He tries so hard to reach the water from the boat that we’re terrified he’ll jump out of our arms. Or flip his wheelchair trying to get over board.
We’re so busy focusing on him that I’m afraid we’ll be over-diligent with Owen to the extent of being under-diligent with the others.
So Bryan and I made the decision a few years back to stop going to the lake. We still take Owen to the pool–where there are way less variables–but we can’t enjoy the lake.
But once again, others don’t understand. They just want to go back to how it used to be, but we can’t.
So every summer we have to explain it again and again. No. We don’t enjoy going to the lake anymore. So we won’t be going.
It’s too hard physically holding Owen back and mentally worrying.
Other traditions have also changed. We can’t put up a Christmas tree anymore. There’s no piling the presents under the tree to enjoy all season long.
They’d be destroyed in an instant.
So we take our decorations up higher. We use a little wooden Christmas tree my mom made us.
But, it’s not the same.
It seems every year we discover more and more that we can’t do. We try to also look for things we can enjoy, but constantly changing traditions is hard.
There’s no such thing as a perfect mom, but I feel so inadequate at times raising Owen. Like the time I didn’t know he’d broken his leg. Until he suddenly stopped bearing weight and we took him in for an X-ray.
And the times he’s having seizures and there’s nothing I can do to stop it.
I feel like a failure because I’m still feeding Owen. He’ll feed himself when the therapist comes over to work with him, but he fights me so much I don’t usually even bother letting him try.
I worry that we aren’t providing what Owen needs. Sometimes I feel like someone else could have gotten the Pica to stop. Or figured out how to teach him to do x, y, or z.
Inadequacy is a struggle I have raising a child with Angelman Syndrome.
The final challenge I’m sharing today is guilt. It’s a biggie!
Owen’s deletion is on the maternal 15th chromosome. I know, in my head, that there was nothing I could have done to cause this random deletion.
But, it’s harder to always believe it inside.
Angelman Syndrome in and of itself isn’t all I feel guilty about.
I worry about giving him sleep meds–is it really what’s best for Owen, or am I just trying to take the easy way out? (Even though they don’t actually let either of us sleep consistently…so it’s not exactly easy)
And it’s not just sleep meds. As his medication list grows and grows, I feel guilty as we add each one. There are so many side effects. I wonder if we’re compounding the situation instead of actually helping.
As he gets bigger and we utilize his safe room and wheelchair more, I feel guilty about having him restrained. I “know” it’s for his safety, but I still “feel” like I should be trying harder in other areas.
I feel guilt that he watches too much TV. Or plays on his iPad too much.
Every time he eats something he shouldn’t, I feel guilty. I feel like I should have been watching him more closely.
I feel guilty that the other kids can’t enjoy some simple things in life like having a Christmas tree and being able to drop a crayon without worrying that it’ll be eaten immediately.
Raising a child with Angelman Syndrome is challenging
But, it’s also rewarding
Despite all the struggles, despite the guilt, and the inadequacy, and everything else, there are rewarding aspects of raising a child with a disability.
I’ll be back next year to share those in detail. But I won’t leave you hanging until then. Here are just a handful of the benefits we’ve enjoyed:
Learning to love more
Recognizing that we all have special needs
Accepting that we can’t do it all and being more willing to accept help
The smiles and cuddles
Strengthening our faith
And those benefits outweigh the challenges. They’re what keep us going forward every day when times get tough.
They’re what we cling to when we’re in the hospital yet again. Or cleaning up a poop party in the middle of the night.
Love keeps us going.
And I’m so thankful for Owen and all that he’s taught us.