When life deals you a hand you didn’t expect, you can sit and be mad about all the things you think you’ve missed out on, or you can adapt and learn to embrace the life in front of you. Sometimes, you go back and forth between those choices as you go through stages of grief and mourning the life that could have been, before you learn to love the life you have and make a choice to be happy.
Making the Choice
We are often asked, “How do you do it?” or told how impressive our positive outlook is, or that we’re special people so God gave us a special child. Truth is, most days I don’t know what I’m doing or how I’m even functioning. Some days I’m not so positive; I sit and think about all the what-ifs and cry and worry. And we aren’t special. We’re normal people, just like you. It doesn’t take a special kind of person to parent a child with special needs. Over time you BECOME who you NEED to be for the sake of your child.
We all have it in us to rise to the occasion, but it’s up to you to CHOOSE to do so. The path to making that choice can be tumultuous and you can go through every emotion possible, but eventually you CAN find your way to happiness. I can’t promise every day is going to be happy. There will always be hard days. But I CAN promise that the good will always outweigh the bad.
Applying the Choice
A few months ago I needed to keep that promise to myself, to consciously choose joy. We had a very important appointment coming up, and it was weighing heavily on my heart. It was possibly the culmination of this journey and the beginning of the next, or possibly not. A year ago, we had blood drawn and sent off for Exome Sequencing. After many genetics tests, I was certain this was the one we needed, the one that was going to answer all of our questions. Then we arrived and the genetics counselor told me that in reality, this test has only provided a diagnosis for 20% of the patients who have had it done. This was much lower than I thought and my hope was once again deflated.
Then, a few weeks later, I got a call from the genetics office telling me results for our test would be in by April 13th and that the doctor wanted us to come in for our results. I told the lady we had an appointment already scheduled for the end of May and asked if we could just keep that one. She put me on hold and came back and said, “No, the doctor would like you here when your results come in.” I was baffled. Then, I was excited! They found something! No, there’s no way, it’s too soon, it’s only been a few weeks. I spoke with one of our therapists, and she too, said there must be a diagnosis or at least a lead. Again, I was full of hope and also impatience. But I wanted to know now. If they knew something why couldn’t they tell me? Perhaps they knew nothing at all? But surely—SURELY they would not call and move my appointment UP to tell me no news—would they?
I didn’t know what I was going to do to keep from going crazy. All day long, I thought about that conversation. Every possible scenario played through my mind. What if they found something? What if what they found is so rare it doesn’t give us any information at all? What if the doctor was just going to be out of the office on our original appointment so they moved us up? How was I going to keep from wondering every single day what that call meant?
That night, I cried. I broke down. It was all too much. So overwhelming. And just like I had before when we came out of NICU, I made a choice. I chose joy. The what-if game brings nothing but heartache. My life is full of enough uncertainty daily; I didn’t need to consciously entertain it any more.
Suppressing the Fears
It had been 21 months without a diagnosis. 21 months of worry. 21 months of uncertainty, fear of the unknown, wondering if my child would wake up the next day, wondering if my child would crawl, wondering if he will walk, wondering if he will speak. Does a diagnosis change any of that? No, probably not. Best-case scenario is that he’s diagnosed with something that there is already research for so we have some kind of prognosis to go by. Sure, that’s not entirely accurate, but it would at least give us some idea about what life might be like.
Something to plan for. Something to teach my daughter about so she’s not scared and so she understands what’s going on with her brother. Something to say this is a completely random gene mutation and it wasn’t caused by anything YOU did. (Because, yes, there are some days I do blame myself. I must have done something for this to happen. In all likelihood I did nothing, but it’s a feeling that is hard to shake.) Something that says if I decide to have children again I don’t have to worry about this. Or possibly that it will happen again…but at least next time I’d be prepared. I’d have a much better idea of what to do.
Worst case scenario…no diagnosis. “Sorry, we still don’t know what’s happening with your child, but hey come back in 6 months and we’ll see if he’s grown into his diagnosis.” Where do we go from there? What other tests are there? I’m sure there are more, but what if there aren’t? What if we’re to be 20 years with no diagnosis waiting for the science to catch up and give us the answers we want? No, I’m not being crazy. There are families 20 years into the journey still trying to find a diagnosis for their child.
Seeing the Joy
These are the thoughts I suppress, because if this is all I focused on, I’d be a wreck. I’d miss out on all of the wonderful and amazing things Braxton is doing. Focusing too long on the unknown and the negative causes you to lose focus on the positive aspects of life.
Braxton is HERE. Braxton is ALIVE. Braxton is crawling. Braxton is making progress. Braxton is laughing. He is full of life. And he is full of so much joy that it just pours out of him and into the lives of others. These are the things I choose to focus on.
I’m not going to sit here and pretend that I’ve got it all figured out, because I don’t. I’m not a better parent than you. I’m not a stronger person than you. If you were in my shoes, you’d do exactly what I’m doing. You, too, would rise to the occasion. You’d be surprised to learn the strength you truly possess.
However, I don’t wish this on you. It’s quite the paradox. I love the life I live, but I wouldn’t wish it on anyone. It’s hard and some days it sucks. The rewards are great, but the hours are long. But, it’s all about perspective. Not just the journey with a child with special needs. Life in general. Life is about perspective. It’s about what YOU choose to make it about. You can choose to focus on all the problems you have, or you can choose to see the brighter side. You can choose pity, misery, and uncertainty, or you can choose to have hope, love and joy.
For us, it’s simple…each and every single day, we choose joy. We choose to live day-by-day, cherishing each day and all the good in every day. Yes, sometimes, we too complain about every day woes, but every day at the end of the day as we watch our children laugh and play we are reminded that this life, no matter how hard it gets (or what next week’s results might bring us), is full of so much joy and happiness.
By the way, we did get a diagnosis: Rubinstein-Taybi Syndrome. It was the beginning of a new journey, a journey full of hope, endless possibilities, and joy.