April 22^nd was Marie’s 16^th birthday. Sweet-sixteens are one of those milestone-type birthdays that you want to celebrate and memorialize. I am writing about Marie’s birthday weekend to do both, but I am also sharing this blog to try to capture for you what is difficult and what is beautiful about this life with Marie and our journey with Ring14 Syndrome.

Planning

What should we get Marie for this big birthday? What will she value? What will make her feel loved and treasured? How do we mark this milestone as truly special? If you are not a parent of a child with severe intellectual disabilities, you might not understand how hard these questions really are. 

Normal gifts, following the progression from baby to toddler to child to teen to young adult, just do not work. Marie will not be getting her driver’s license this year, so there could  be no car-related gifts and no celebration of new-found independence with friends. We typically fall back on trying to find developmentally appropriate gifts, but it gets harder and harder each year to find something novel or something exciting when your daughter’s interests have not progressed beyond those of a toddler. 

We shifted our focus: instead of a thing, we decided to give Marie an experience that would be built around her. But, again, this is not quite as easy as it sounds. While we wanted to celebrate with everyone who values and loves Marie, we knew that an event best suited for Marie (and my husband!) should be restricted to those individuals with whom she is most comfortable, which is her family. So, we planned a long weekend together with everyone meeting up in San Antonio, found a comfortable house to stay in, and looked forward to an excursion to Morgan’s Wonderland, a special-needs amusement park which had thrilled Marie in the past. We knew from experience that everything about this plan would need to be flexible because the only thing that is predictable in our life with Marie is the unpredictability of it all. You see, Marie has a severe form of epilepsy which has never been very well controlled, and her seizures have no respect for plans, no matter how important.

Birthday Weekend

When Marie started having seizures on Wednesday night, the day before her birthday, we knew that this was not at all going to go as planned. It is not necessary to go into all the details, so let me summarize by saying that the night — with 5 seizures — took a heavy toll. Instead of Marie’s birthday being the kickoff to our celebratory weekend, it became an all too familiar day of managing her care while trying to avoid the hospital. Marie slept through most of her birthday as monitors beeped and the oxygen concentrator hummed in the background – her bedroom has an assortment of devices that enable us to provide care at home. These types of days are so long and stressful; it was not the birthday we had envisioned.  All plans were put on hold… We decided to reevaluate in the morning in the hopes that we could still slip away. 

We finally left town Friday afternoon after Marie was evaluated by her home healthcare nurse, her lungs were declared clear, and her bowels had again started moving (everything slows down during a seizure cluster). Marie again spent the day sleeping, recovering in the arms of our second daughter while we traveled. Our oldest daughter met us in San Antonio with her boyfriend. No one could wait to share their enthusiasm for being together. We put on hats, sang happy birthday, blew out candles, and opened gifts. Marie was a good sport but could barely hold her head up. Even so, it felt right to be all together. We went to bed hoping for a better day tomorrow.

We took it easy Saturday morning and let the day unfold slowly with coffee, breakfast, and conversation. At 11am, we made our way to Morgan’s Wonderland. Although Marie was not yet up for active play, she did seem to enjoy being strolled about the park, swinging, and riding the train, railed cars, and Ferris wheel. By 2pm, she was wilting, so we went back to the house to relax. That evening, we had a lovely dinner on the veranda at La Cantera Resort and were treated to our first real smiles of the weekend as we pushed Marie over a bumpy path while taking in the view. Ah, she was returning to us again! Yes, we took a picture 😉

I am going to struggle to explain what a blessing Sunday morning was for all of us. It was the celebration we had been waiting for, but it looked nothing like what we had planned. Marie was all smiles, all cuddles, all sweetness, and we literally just soaked it up. We took turns sitting with Marie in the shade on the back porch while watching the others play basketball (I use those words loosely!) and other backyard games. We opted not to go anywhere; we were simply together with Marie in our center and that was more than enough. 

Happy birthday, my sweet-sixteen princess!!!

Reflections

You might ask yourself why we decided to travel on the heels of such a terrible two days, and it is a valid question. Why not postpone? But the truth is that any postponement might have found us in exactly the same situation — let that sink in. It would have been easy to stay (so much less packing!), easy to sink into the sadness, easy to write this off as another botched plan. 

When Marie falls apart, there is the temptation to withdraw; it feels too heavy to share. However, these days are made so much lighter when spent in community, whether that be family, friends, or an extended support group. Never underestimate the power of empathy — you just have to be brave enough and vulnerable enough to let them in.

It is worth noting that not only did we want a special event for Marie, but we also needed it for ourselves. We needed to mark our timeline with something of joy, not a crisis. Instead of defining this birthday as another derailed event, I will choose to remember our wonderful Sunday morning in San Antonio where we celebrated the beauty of this child turning 16 and the value of being together.

This life requires patience, resiliency, and an intentionality to look for the joy — it is there, but often it is found in the shadows, in the quiet, and in the unplanned simple moments. Take note of this joy and fill your bucket every chance you get.  I think this is true regardless of whether your life looks like mine, but it is especially true for those of us who have the privilege and challenge of caring for our special children.  

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