Everyone should have a special needs child. What a ridiculous statement, I know. And trust me, three years ago I would NEVER have said those words. I never really even knew anyone with “special needs” and certainly never expected to have a child with them. (And just to clear things up, I actually wouldn’t wish this on anyone, but it has totally changed my outlook in ways that I hope might help you navigate this crazy world we're all living in).

Three+ years ago, I gave birth to a seemingly “typical” baby, but he wasn’t easy from the start. I continually heard about colic and food allergies (which he had). I was told that kids “develop on their own timeline" while we were always behind. And, on top of all this, I developed pretty severe postpartum depression and PTSD from a baby that cried — A LOT.

It took us a year and a half and many appointments to uncover the worst news of my life, or so I thought at the time, that Emerson had Angelman Syndrome. A rare genetic disorder that can cause walking and balance issues (some never walk), gastrointestinal issues, seizures and little to no speech, to name a few symptoms. Simply put, he will need 24/7 lifelong attention and care.

Portrait of Emerson

I honestly cannot explain the level of grief my husband and I felt. It was a life sentence of hardship. The future we planned was dead, but it wasn’t just gone — it left behind therapies, appointments, and countless conversations with big medical terms that left me feeling inadequate and very dumb. I didn’t want this and certainly wouldn’t wish it on anyone or their child. 

So, how did I get to the statement “Everyone should have a special needs child”? Well, some counseling (highly recommend), an amazing “tribe” of friends and family, wonderful doctors, therapists and medical advocates who “dumbed things down” for me and helped us learn this new path, and a flexible work environment (thank you Ample!) all played a role. But perhaps what helped me the most was a HUGE perspective shift. 

Changing my perspective

See, here is the thing — as a “special needs” family, we could look at all the negatives. But that’s no way to live. And I am stubborn – ask anyone who knows me. I couldn’t just sit in despair. The Project Manager in me has to “fix things” and make them better. So, I worked to shift my thinking. Instead of seeing all “he can’t/won’t do,” I’ve learned to focus on all “he can/does do.” Where did I learn this? 

  1. From Emerson himself. He doesn’t know what he is “supposed to be” or what he “can’t do.” He just lives every day as a happy, stubborn, determined toddler trying his best and enjoying the littlest things in life. When learning to walk, he just put one foot in front of the other and leaned on any ‘tools’ to assist him along the way – and we celebrate every. single. step.
  1. From others, who helped me put things into perspective. When we heard Emerson’s diagnosis we thought it was the worst news we could receive. But, there are families in much more difficult positions with a lot harder work to do, and they continue to remain grateful and positive... but I guess that’s sort of my point. 
Comparison can be a thief, but it can also be a gift — not to put others down or downplay our hardships, but to illuminate all we have.

It’s not easy. It takes hard work. I am not naturally inclined to think this way, but have learned some tools to help me adjust. Here’s what’s helped me, and what may help you too when life isn’t going as you planned: 

  • Feel your feelings. I spent days in bed crying. I was angry. I vented. I questioned. To contradict my statement above, just because others may “have it worse” doesn’t mean your feelings aren’t valid and real. It was so important for me to acknowledge my feelings in order to progress through them. 
  • Ask for help. We’re all in a weird and hard year but not everyone is drained at the exact same time. Tell the people around you when you need help and be specific. I am not good at asking for help, but Emerson’s diagnosis has forced me to. The more I ask, the more I realize people want to help but usually don’t know how. It is ok to say “not cooking dinner would be a huge help” or "I need a day off work just to recoup.” 
  • Define your priorities. I used to think my house needed to be clean all the time. I needed to cook dinner for my family. I needed to work a full time job to be successful, but that just isn’t realistic. Acknowledge what really has to happen and let everything else be a nice to have.
  • Give yourself grace. Once you have set your priorities, give yourself grace with them and everything else for that matter. We are much kinder to others than we are to ourselves. But especially in 2020, we all need some grace. 
  • Rewire your brain. Yes you read that right. Two of the most helpful things I learned in counseling were the practice of grounding and the science behind rewiring our brains. Knowing that I am able to have a part in controlling my thoughts and therefore my emotions allowed me to redirect them in a more positive way when I was ready/needed to move on from just crying!
  • Practice gratitude. “Gratitude is the expression of appreciation for what one has. It is a recognition of value independent of monetary worth.” It is an action, a choice. Stopping to recognize all we have to be thankful for has played a huge part in changing my perspective. 
  • Take the next step. When all else fails me, I am smacked in the face with all of Emerson’s needs. It snaps me into the reality that all I can do is the next thing. Wake up. Get to work. Make breakfast (or order it). By taking one step at a time, you get through the hard stuff and get closer to another – and hopefully easier – day!

As we continue to live in this weird COVID-19 world that is 2020—oftentimes feeling like it’s all too much—Emerson has been the example for me and my family. Not to focus on what we do not have or cannot do (I miss restaurants and traveling), but instead to smile, keep trying and enjoy all we do have and can do. No, we don’t have a “typical” kid, but while he is a lot of work, he is pretty darn great! I choose to focus on the second part, not the first — and I’m trying to apply that to all aspects of my life.

With the holidays right around the corner in the middle of a crazy year, I encourage everyone to focus on what you can do. Like Emerson, even when things are really hard and frustrating, keep trying, take the next step, enjoy the little things and smile.

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