Loving the Life You Didn't Think You'd Have

Finding a way to accept and love your new normal.

Normal. What does that even mean? When it comes to the life of a family who has a child with special needs, normal is probably one of two things:

1. A word they do not want to hear.
2. A word that they've come to accept, but with another word before it —"new." New normal.

Our family’s new normal began with the birth of our second son in April 2015. Really, each child brings a new normal to your life, but this time it was more than becoming accustomed to being parents like it was with our first. It was different. 

Our new normal came with a rare diagnosis of Apert Syndrome and all that comes with that. It came with countless doctors appointments, feeding issues, finding specialists all over the country, therapies in our home and out of our home multiple times a week, multiple surgeries, in addition to managing life with two children. I distinctly remember a moment during my healthy pregnancy where I thought “how am I ever going to leave the house with a baby and a 1-1/2 year old?” Once Wesley was born that thought seemed like a joke. How was I going to leave the house with two? We had no choice but to go to appointments, and while we were lucky to have support, we were out and about doing things we never imagined. That was our new normal.

My best friends became staff at the doctors' offices. They knew my voice when I would call in to schedule appointments just from saying hello. My son’s therapists often became my therapist because he or she was someone to talk to about all of the differences, and we saw each other so often.

I would be lying if I said that I have always been 100 percent fine with our new normal or that it never bothered me. That is not the case at all. Over the past three-and-a-half years, however, our whole family has come to love our new normal. Here are some tips that have helped us:

Love. Love your child(ren). That may sound like a silly statement, but sometimes after learning of a child's diagnosis, it can be scary to fall too in love. If you don’t know the prognosis, it may be easier to keep a healthy distance. It can be a shock to your body staying in this state of denial and not allowing yourself to fully fall in love with your child. Love your child unconditionally, separate from their diagnosis. Love their quirks. Love their perfect and imperfect parts. Just love.

Accept. Accept that things are different. Our family truly believes that different is not bad. The sooner that you can accept that something is different in your life, the sooner you can find peace. Accept that you may no longer be able to pick up and go to a playdate with friends because your life involves medical equipment or staying away from germs at public play places. Accept that you may see your child’s therapists and doctors more often than you see your best friend. Choosing acceptance can release a weight off of your shoulders.

Try to do things that made you happy before your new normal started. This one can be tough. Our family has always loved to travel, whether for a long weekend away to visit family or a week away somewhere with a beach. I remember sitting in the hospital after we had Wesley selfishly thinking, our life has changed so much and travel is just never going to happen. I figured it would be too expensive with medical bills, plus how do you travel somewhere with the potential of needing a children’s hospital if anything goes wrong? My concerns were valid. During Wesley’s first two years of life, we didn’t travel except to visit family once or twice, but usually our travels were for surgery.

But then it happened! We hit a slow period in his surgeries. We saved and chose to travel. It was still nerve wracking. Most people don’t have to look into children’s hospitals and have it in the back of their mind where they would go if an emergency came up. We chose to focus on our excitement of traveling, but what do you know, Wesley got sick and needed to go to the emergency room on our trip. It was absolutely disappointing, but it wasn’t the end of the world. We were prepared. We knew it was the best option for his care versus going to an urgent care. We even educated some of the staff at the hospital on his condition. Do I wish it hadn't been necessary? Absolutely, but we did our best to do something that would make our family happy.

We truly loved our life that week minus the brief hospital trip. It was almost like a break from reality. We didn’t have doctor appointments or therapies. We just had a little blip midweek, but that’s our new normal. It was easy to still love the trip since we had accepted that as a possibility going into it, and we were doing this for us.

Make friends with parents who get it. This has been so important for me. Our son is rare. The numbers say around one in 165,000 kids has Apert Syndrome, roughly 40 born in the United States per year. Some kids have more common diagnoses and some more rare. Those numbers don’t matter so much if you can find a community who understands. It may be someone who has the same diagnosis, or it may be someone who simply has any diagnosis and understands the medical parent world. For me, it has been both.

Social media has been a tool for me to find people who have kids with Apert Syndrome. I now call two parents I met through social media my very best friends. I’ve also been incredibly lucky to connect with a couple of moms who have kids with other diagnoses. The bond has brought us together as we cheer each other on through surgeries, appointments, therapies and simply living the everyday part of having a child with special needs. These are the people that you can discuss things if a cold ia cold or is it something that is going to be worse because of Apert Syndrome.

Or how do you manage when people invite you to hang out and you have to consistently tell them no because of the medical part of your life. You don't have to worry with friends who understand your new normal. They just get it and that can mean so much.

Live in the moment as much as possible. This is double sided. It sometimes means living in those tough moments, but it also means living in the moments that are more similar to what normal used to look like for you. The fun part though, is that this also means living in the moments that are new.

My son used a gait trainer for a short time as he tried to figure out walking. It was hard because it wasn't a normal I had ever envisioned my child needing, but our older son thought it was the coolest thing to see Wesley scooting around in the gait trainer. It was a special moment in our new-normal lives.

Celebrate the inchstones. This practically is my motto. Parents are trained to look or their child's milestones. At well-checks, you fill out forms answering what your child can and cannot do at different ages and stages. For children with a medical diagnosis, milestones realistically don't happen on the usual schedule. With this in mind, my family chooses to celebrate inchstones — the things that get you to a milestone.

For instance, I did not get to answer any of the fine-motor skills questions as a yes for Wesley until he was probably about 20 months or so. His fingers weren't separated until he was 16 months old, so the idea of “can he pick up a Cheerio with his thumb and pincher finger” was difficult to even envision, but we celebrated every moment that he could do anything with his hands. He could use his hand almost like a suction cup to pick up a puff or cheerio, he could use his hands together to pinch things and pick them up, and we celebrated his first hand surgery by making molds of his hands prior to surgery.

So when you first get that diagnosis, and it feels like you may never love life again (sounds dramatic, but it can feel that way for some), I'm here to tell you that with a little work, you can choose to love the life you never thought you would have.

Jesanne Roden-Reynolds is wife to Bryan and mother to Jackson, 5, and Wesley, 3. Originally from central Pennsylvania, they have lived in the Charlotte area since 2014. She and her son Wesley visit schools in person and via the Internet to spread the message to Choose Kindness. If you are interested in a presentation, please e-mail kindpresentations@gmail.com. For support and to make more connections within the Charlotte area, consider joining this private Facebook group Special Friends Connection – Charlotte Area.  If you have a topic you would like to contribute to this blog please send an email to specialfriendscltblog@gmail.com.