It’s February 15th, and Angelman Syndrome Awareness Day. My oldest son, Owen, has Angelman Syndrome.
In honor of this, and to help raise awareness for this rare condition, I want to share 15 ways raising a child with Angelman Syndrome has blessed us.
But, raising a special child is also a blessing. Owen continues to teach us all, without ever saying a single word.
Let’s look at 15 of the blessings we’ve discovered about raising a child with Angelman Syndrome.
1. Increased Faith
Children are a blessing.
There are no qualifiers to that statement in the Bible. It doesn’t say that typical children are a blessing. Or any other descriptive words.
All children are a blessing, and a gift from God. He doesn’t make any mistakes, and Owen missing part of his 15th chromosome didn’t take God by surprise.
Owen was added to our family on purpose. And, because of him, my husband and I have both grown spiritually. Our faith has increased. We know that all things work together for good, and can clearly see how God used Owen to help us grow.
We’ve grown closer to God as we walk through the many challenges we’ve faced.
2. Becoming Less Dependent on Stuff
Stuff is everywhere. It’s easy to get focused on your stuff, and to almost let it define you to a certain extent.
I used to have a tough time decluttering. I’d think…I don’t want to get rid of that, so and so gave it to me and they’d be sad if I got rid of it.
Or, I might be able to use that someday, so I better hang onto it.
But, when your child with Angelman Syndrome develops Pica and starts destroying everything he can reach to eat it, your relationship with stuff changes. You realize it really is just stuff. And, you learn to let it go more easily.
Even stuff people I love gave me. Objects don’t define relationships, and they don’t need to be hung onto forever to demonstrate love.
Owen’s pica has helped us minimize many of our belongings, and find better homes for the rest of them. Less stuff and more organization is definitely a benefit!
And as a bonus, my kids are learning personal responsibility from an early age. When they leave their LEGO instructions out on the table, they often only find half of them a short time later because the other chunk got eaten.
This is a natural consequence for our house, and teaches the kids to put their stuff up and away.
3. Focusing on the Positive
Owen has determination and a fighting spirit. He’s proved doctors wrong over and over again, and pulled through difficult medical crises.
He learned to walk on his own. He’s been gentle with almost all of his younger siblings. He loves dancing/moving to music.
Yes, there are things he can’t do. There’s a lot he can’t do.
But, if that’s all I focus on, that’s all I ever see.
He’s definitely taught me the importance of choosing to recognize the positive. This trait has helped me become a better mom for all my children. The good is there, if you look for it.
4. Showing Me a Better Way to Homeschool
I used to be a huge “school at home” fan. Homeschooling Owen changed me. Sitting and doing book work all day isn’t going to work in this house.
So we do a lot more hands on learning now. And watch videos and get up and move to some music. We use technology because everyone can participate, and get something out of the experience.
My kids are learning, and having fun while doing it. Our school may not look like school to the outside observer, but there is a ton of learning going on.
I’ve been lifting, carrying, and helping Owen with all aspects of self-care since he was born. He’s now 11 and 65 pounds.
I have the ability to pick him up and carry him when necessary. Throwing that much weight over your shoulders and walking takes strength! So does changing him, getting him dressed, and loading him into the car.
My arms get a constant workout, and I am thankful for the strength this has given me.
I know the day is coming when Owen will hit a puberty growth spurt and transition from boy-sized into man-sized. At that point, I doubt I’ll be able to carry him. But for now, the strength I’ve gained from caring for him is a definite blessing.
6. Embracing the “Not Normal” Life
Normal is not an adjective you’d use to describe our family.
Not only are we raising a severely disabled child, we also have seven other children. And live on a farm in the middle of nowhere. And we are in the process of applying to become missionaries to serve in Missouri.
Most people think we are crazy. And I have to admit, we kind of are.
But I don’t think that’s a bad thing. You see, no one is really normal. Every family has their own unique quirks. Some just try too hard to hide those differences and fit in with everyone else. To keep up with the Joneses so to speak.
I know I used to want to.
Until Owen helped me realize that not being normal is okay. His differences helped me to see the differences in everyone. And to be okay with being different.
You see, the path God has for our family is not one that resembles normal.
And some days I wonder if we would even be willing to walk down the path before us if Owen hadn’t helped us get over that whole desire to be normal thing.
7. Valuing Each Day as a Gift
We’ve almost lost Owen several times.
When he was an infant, he was failure to thrive. He only weighed ten pounds at six months of age. He had terrible reflux, and I was constantly waking him up to eat, and he still didn’t gain. His fundo/g-tube surgery when he was one helped get some weight on him.
Then when he was two, he kept having severe ear infections. After a routine surgery for ear tubes, he ended up in respiratory failure because the nasty infected fluid from his ears wound up in his lungs. He spent a week in the PICU, and there were times we didn’t think he’d pull through.
He developed Pica when he was six, and has since eaten more things than I’m sure I even know about – any of which could puncture his bowels or cause him to choke. He’s needed several surgeries to remove things.
A state of constant seizures took a huge toll on his body a few years back. Drop seizures have resulted in pretty bad head injuries and lots of stitches.
I could go on, but I think you get the point. These medical emergencies, though terrible, help us to truly appreciate the gift that each day is.
None of us is guaranteed a long life. Though God has seen Owen through each of these incidents, we don’t know what tomorrow holds. For any of us.
And though as parents we want to think we’ll live longer than all our kids, we realize there’s a possibility that we won’t.
That’s why it’s so important to make the most of each day. Tell your loved ones you love them. Say yes to playing games and being silly. Hold your kids close and tuck them in with a fun story. Those are the memories you want to make.
Don’t hold grudges or let bitterness ruin the days you have. Life is truly too short for that.
8. Learning to Celebrate the Small Victories
Our first child met all her milestones when she was supposed to. And though we rejoiced and took pictures, it was almost like, of course she was going to do those things – now let’s see what she’ll do next.
I was always focused on what was next. When she learned to roll, I started working with her on sitting. When she figured that out, I was already thinking about the days she’d be crawling. Or walking. Or whatever.
The milestones all sort of rolled together. And I didn’t take time to enjoy and celebrate where she was at. I had my eyes on the next best thing.
Then Owen came around.
He didn’t meet any of those early milestones. There are some he still hasn’t met, and he’ll be 12 in May.
When he was one and did learn to sit on his own, it was after a ton of hard work. We celebrated that victory even more, because we didn’t know if it would ever be coming.
The same with walking. It took him years to learn to walk on his own. And we rejoiced like crazy when he took his first steps.
Owen helped us learn to not take small victories for granted. Each one represents a lot of hard work, and is a huge accomplishment to the person reaching it.
9. Deeper Understanding of Love
Owen has taught us a lot about love, and helped us to love each other more. We understand that love isn’t reserved for the good times. It’s not only an emotion, but also a choice.
And though divorce rates are high for parents of special needs kids, my husband and I are more in love now than we were when we got married. We praise God for that.
When you walk through the valleys with someone, and choose love, it’s remarkable how close you become. I can’t imagine walking through life with anyone else. I know part of our strength is a direct result of being Owen’s parents.
I’m so thankful we’re able to model this love for our kids. We pray that they also grow up to have strong, loving relationships.
10. Stepping Outside Your Comfort Zone
Do you know what profession I never wanted to go into as a child?
I hated blood. And body fluids. Ew!
Well, fast forward several years. Do you know what profession having a special needs kid brings the parents pretty close to being into?
I’ve learned to change g-tubes, administer enemas, care for stitches, sweep a swallowed object out of the back of the throat, and administer so many meds I feel like a pharmacist. Including some emergency seizure meds that don’t go in the mouth, if you know what I mean.
My stomach has grown stronger, and so has my confidence.
Stepping outside of your comfort zone is important. It helps stretch us into better, more well-rounded people. It helps smooth out our rough patches and find our inner strength.
11. Becoming an Advocate
My son can’t speak. He doesn’t yet have an expressive form of communication.
This means I must be his voice. My job is to be his advocate, and to stand up for what is best for him. Even if it means standing up to doctors, making a dreaded phone call, or rushing him to the ER when there’s a problem I can’t handle at home.
Any parent has to advocate for their kids, obviously. But, when your child has a severe disability, you become the expert. You learn to tell when something is wrong, even if you don’t know what it is.
For example, back in 2012, Owen was in a rough patch. That’s the year we put him on the keto diet for seizures, and also the year he developed Pica. His personality was completely different by mid-year, and I couldn’t explain it.
I just kept telling all of his doctors that he was different. That it was like he wasn’t really here with us, but just a shell.
The doctors didn’t believe me at first. (That happens more often than I care to admit…). They kept saying it was just a seizure-free Owen, and we should get used to it.
But, I kept pushing, because my gut told me something else was wrong. And I finally got an on-call neurologist to listen to me after yet another trip to the ER. He agreed to admitted him to the hospital for a 24-hour EEG, and he was shocked with the result.
Owen was having almost constant seizure activity, during the entire test. No wonder he wasn’t himself!
It took a lot of really strong meds to get our Owen back. And this incident really cemented the importance of advocacy for me. I’m becoming better at this each year, and that is a blessing.
Patience was not a strength I would have claimed fifteen years ago.
According to the dictionary on Google, patience is: “the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.”
My temper used to be incredibly short, and I’d become upset easily.
But, the Lord used Owen (and the other kids) to help me in this area. Now I have many opportunities to practice patience each day.
It takes patience to practice the same skill over and over (and over and over and over) again. And to wait for Owen to finally select a movie on his iPad at night.
Patience is needed when you find out there’s a six-month wait to get into a specialist. Or when you’re waiting on the insurance company to approve a medication the neurologist hopes will help.
It’s keeping your cool when your child yanks your hair, or breaks your glasses in the middle of the night when you think he’s sleeping on the couch next to you.
I’ve not yet arrived at a constant state of patience. But, I’m a whole lot better than I used to be. And that is a huge blessing!
13. Taking It One Day at a Time
Each day has its own trouble, and raising a child with Angelman Syndrome has helped me learn the importance of not borrowing trouble.
For instance, Owen used to eat completely through his G-Tube. When he was one and I was hanging the bag of formula on an IV stand and hooking up his pump, I used to dread the thought of feeding him like this for the rest of his life.
I took where we were at the time, and applied it to every day in the future.
And I ended up wasting a lot of time worrying about something that never happened. Because when Owen was a couple of years old, he outgrew his swallowing problems and was cleared to start eating by mouth.
Today? We haven’t used his g-tube for nutrition for a long, long time. He eats everything by mouth.
But, sometimes it’s so easy to throw the worries and problems of today out into the future. We think that because something is this way today, it’s always going to be.
Life changes. Kids grow and get new skills. What they struggle with today, won’t likely be the struggle a year or two from now.
So take it one day at a time. And let tomorrow’s problems happen tomorrow.
14. Recognizing the Danger of the Comparison Trap
When Owen was younger, I had a really hard time talking to other moms who had a child the same age. They’d tell me all about what their kids were doing.
I’d easily fall into the comparison trap at that point, and start wondering what life would be like if Owen didn’t have AS. It was a negative place to go mentally, and one I’ve learned to avoid.
As Owen has grown, I’ve discovered the dangers of comparing your life to the lives of others.
Comparisons can keep you from celebrating where you are. They can make you feel discouraged, like an imposter, or any host of negative emotions.
Instead of making comparisons, just celebrate the victories of others. Let’s encourage each other, without letting something good pull us into a bad mental pit.
You can be truly excited that your friend’s eleven year old is an honor student and star soccer player without having to feel bad that your child is not.
You can celebrate with a blogging buddy when they get a viral post, without having a pity party about yours not performing as well.
All throughout life, you’ll have opportunities to compare yourself, your kids, your spouse, and your life with that of others. Don’t go there. It’s not worth it.
15. Lots of Cuddles and Snuggles
Some of my older kids no longer want to sit and cuddle. They kind of outgrow that somewhere along the way.
But not Owen!
He loves a big bear hug, and sitting together on the couch. He shows his love without holding back.
And I know I can count on him for a hug whenever I’m having a rough day.
I love his cuddles and snuggles. And I love that he’s still willing to dole them out freely even though he’s almost a teen.
Raising a Child with Angelman Syndrome IS a Blessing
I love Owen. And Angelman Syndrome is a part of him.
Yes, if I could flip a switch and take away the condition, I would.
But, I don’t have that option. And they haven’t yet developed a cure (though the research certainly is exciting!)
So, Angelman Syndrome is part of our life. It’s part of our story. And it’s been one of the factors shaping us along the way. We wouldn’t be the family we are now, were we not touched by this disorder.