Happiness

Almost nine years ago I sat in a stark white doctor’s office when I heard the devastating diagnosis for my son, Mitochondrial Disease. As the doctor was reviewing my son’s rapid deterioration, he told me that I would be lucky if my son lived to be 10. If he did, he would surely require full care. I asked the doctor what we could do to increase that number and the doctor said, “Never let him leave his room and we can increase that.” I remember not missing a beat and replying back, “No, we are going to live.” Through the next several years, we had a daughter who was also diagnosed with the same devastating disease, and once again we chose to live.

We didn’t just choose to live. We chose Happy.

Each of us, and especially those parents of children who are chronically ill, is faced with a choice. We can choose to be held down by our fears, worries and heartache and be sad, or choose to see past all the obstacles and be happy.

Happy is not always an easy choice. In fact, it can be very difficult. Each day I look at my kids and wonder what is happening in their tiny bodies. Are they getting weaker? Are they winning the battle or is Mito slowly stealing parts of them away? Our daughter has been having some new and very concerning symptoms. We are going through the doctor circuit trying to figure out ways to help her. Each appointment leads to more appointments, more questions than answers, and it makes me worry.

I look at her some nights and just pray to God that he points me to the right answer with her. I feel sad and overcome with worry, but then a tiny voice in my head tells me to look at her again. It tells me to look past the pulse ox beeping, the BiPAP breathing for her. Past the pumps and fluids that hang and infuse at her bedside. The voice tells me to take a really good look at her and so I do.

I see a little girl whose nails are painted with pretty pink and green from our girls’ day at the spa. She smiled ear-to-ear as she sat soaking her feet while getting her hands massaged. She loves going to Sweet and Sassy salon. Her soft and curly hair is laid out on her pillow. I wonder how she was blessed with such beautiful hair. Clearly it didn’t come from me. I see her stuffed animals that she is holding tightly, and I can almost hear her calling them each by name. There’s Colorly, Heavenly and Zeebe. She cuddles her bear Heavenly tight in her arms, and I remember her having the hardest time choosing which animal to get. She was trying to convince me that she really couldn’t pick just one, so she thought she should get both of them.

I begin to feel my worry and sadness lifting a bit. I see her two “Nonnies” or blankets tucked under her head and her chin. I remember wrapping her up in those blankets that her Grandma made when she was just a tiny baby. Boy has she grown!

As I look at her, I see her purple princess pajamas. Rapunzel is her favorite and she picked these out for that very reason. I see her relaxed without a worry in the world. I imagine her dreaming of rainbows and happy times and it takes me back to my choice. Do I leave her room full of worry and sadness, or do I smile and choose Happy because I am so very fortunate that she is sound asleep in her own bed tonight? That she is alive and able to hug me and tell me how much she loves me? I choose Happy, give her a soft kiss on the cheek and leave her to her dreams.

You see, every day we are given the amazing opportunity to choose Happy. When we choose Happy, we then have the opportunity to have our wonderful memories come rushing back filling in the worried and sad places in our hearts. I pray each day that I will continue to be able to choose Happy no matter how hard the road becomes.

The great thing about life is that even if at one moment we don’t choose Happy, we can always change our minds. We can choose to look past the hardships and heartaches, and we can choose to find something that makes us happy. It’s a very small choice than can have huge impacts on others and ourselves. The people in this world that make the greatest impact are those who choose Happy no matter what obstacles are in their way. I’m pretty sure that’s why children can often have the greatest impact on the world. They choose Happy the most….

So as you go about your day, through the trials of this life, what choice will you make? Will you choose Happy?

Katie is a mom to two amazing kids who happen to have Mitochondrial Disease. Alex is 11 and Lauren is 7. Despite being a NICU nurse, nothing prepared Katie for the greatest task of her life, raising happy and well-adjusted kids while juggling the many jobs that come with being the mom of chronically ill children. Their family motto is, “God’s plan is the right plan,” and they choose to live every day to the fullest, always choosing “quality” over “quantity.” Feel free to follow their journey as they hope for a cure and pray for a miracle at www.caringbridge.org/visit/alexanderlindemann.