10 Things I Learned After I Married a Father of Children With Special Needs

When my husband, Dylan, was a stranger approaching me for the first time, he asked for my name. He apologized because he hadn’t “done this sort of thing in a long time” and didn’t “really know what to say or how to say it.” He blushed and told me I was beautiful. He was shy and sweet and still is.

The first bit of information my husband ever offered me, besides his name, was that he is the immensely proud father of three spectacular children, two of whom have a condition called Joubert syndrome.

He smiled and a wave of paternal relief washed over him when he realized I was a special needs substitute for our local school system and had already met his middle child. Later on, he explained to me that it had at least partially put his protective anxieties to rest.

Over time, I learned more about Joubert syndrome and how to take care of these children whom I love so much. I now know how to suction my step-daughter’s trach and hook her up to her ventilator at night. Dylan taught me how to feed the kids formula through their G-tubes and what to do should one of them have a dreaded “blue spell.” I change diapers and make heaps of chicken noodle soup. Together, we watch a lot of “Madagascar.” A lot.

There are some things, though, that the children have taught me all on their own and other things that I could only learn through loving, protecting and nurturing them. The people around us, friends and family and strangers alike, have given me some wisdom as well.

1. Questions and comments will come frequently. Sometimes, they’re good, valid ones from polite, warm, genuine people. Other times, I’m left to wonder. In both situations, it’s my job to keep the children in mind, raise awareness if I can, stand up for the kids and protect them if I must and ultimately do my best to share knowledge and love.

2. I learned that perfection isn’t a myth and that it often comes in the form of wonderful little humans who giggle/squirm/cry/snore their formula back through their mic-key.

3. Sometimes, scary things are going to happen. They’re bound to. The first time I saw my sweet step-daughter turn blue, my heart broke and I watched in amazement as Dylan fixed her all up in under a minute. Daunting moments are a certainty. But it’s my job to protect them and love them through it.

4. I learned what it’s like to stay up all night holding a tiny little girl, trying to remember what sleep felt like, and knowing that moment beats any moment spent napping.

5. I’ve learned to never take one step, one breath, one day for granted. Every second is precious, and every second with them is even more so.

6. Yes, it is entirely possible to love someone more than you love your spouse. I love them at least twice as much.

7. A “typical” custody arrangement isn’t always best. My husband and I have them every other weekend and at least a one or two days during the week. These kids have a different schedule, so my husband and their mother have a different schedule, too. These kids get to feel love from mommy, daddy and step-mommy all at the same time without ever having to miss anyone.

8. As a childcare worker, I already had a lot of respect for parents, especially special needs parents. Now, that respect is accompanied by something much deeper — a type of understanding and sense of admiration. You guys are amazing parents.

9. I have learned a sense of gratitude towards any parent who has allowed another person to be in their child’s life, especially my husband and their children’s mother.

10. Quiet isn’t something I strive for anymore. I love to hear the thumps my step-daughter makes when she does her leg exercises all on her own. My step-son loves to coo and giggle and make ferocious dinosaur noises. A loud, semi-cluttered, busy house is a house with them in it. I’ve learned to appreciate those little sounds and smells and feelings and to cherish afternoons spent at home watching “Madagascar” for the 10th time.

Ultimately, I’ve come to know what love really is. These children are my heroes.

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