Families: What is really important?

So many people today take life for granted. We go about our busy lives thinking that we will always have tomorrow to address things we may have put off from today. We go to sleep at the end of the day with the expectation that tomorrow will come, and with a new day, all of the people that we care about will be there too. We walk away from arguments selfishly assuming that we will be able to mend fences and make amends at a later time. At times, we even put off connecting with family members because we know there is time later to build a stronger relationship. What happens if we are wrong? What happens when tomorrow does not come?

I am the oldest of five children, and I have four younger brothers. I would like to say that we have a close relationship, and that we share many happy memories about our childhood. Sadly however, I cannot. Due to decisions made by the adults in our lives, we actually spent most of our childhood apart, more to the point; I actually did not know that my three youngest brothers existed until I was 17 years old. When I met my brothers for the first time, it was difficult for all of us. They were 14, 12 and 7 at the time, and they had grown up not knowing they shared their dad with other children. We were kids however, and although weird at first, we came to accept each other. I had the opportunity to spend a few months with them and before long, we were bickering like brothers and sisters everywhere do. I loved them.

The relationship I was trying to build with my father and his family was weighted down by 16 years of baggage. There were reasons my father left, and reasons my mother kept her children from him. After a few months, just after Christmas actually, my father abandoned me for the second time in my life.

This was devastating for me. This time, I was also grieving the loss of my three brothers. Time moves on, I grew into a woman and had my own family. I had come to a place of acceptance about my father, but my siblings were always in my heart. I missed them. Holidays would come and I would wonder where they were, if they were happy, I tried to picture the men they were growing to be.

Over the years I would occasionally try to search for my brothers with online search tools to no avail. Finally, in 2009, through the magic of Facebook, I found my brother Dan. I was so excited and apprehensive when I saw his picture. I knew it was him; he looked just like I remembered him. I sent a friend request and waited anxiously to see if he would accept. It was a long couple of days of waiting. Finally, I received that (familiar) notification that I had been waiting for. After 18 years, I was finally on the path to having my brothers back in my life.

Through Dan, I found Noel, and this year I found my baby brother Adam. It has been hard for us to make a familial connection with each other. We have all walked different roads to get to this (new) place, we all carry scars from our childhood, and we all have lives that have been built to the exclusion of each other. My hope was to muster the courage to make a trip to see them. Yet, I didn’t want to intrude. As I looked at their pictures on Facebook, and read their status updates, I always promised myself that soon I would reach out and make plans to connect. Soon I would introduce my daughters to uncles they never knew existed. Soon, we could build a family connection.

Tragically, I learned that my version of “soon” was too late. On June 18th 2011, at the young age of 33, my brother Dan was killed in a motorcycle crash. Gone forever is the opportunity to reach out and truly connect with my brother. I will never feel the excitement of hearing the rumble of his Harley pulling into my driveway for an impromptu visit on a lazy summer afternoon. I will never have the chance to share a hug or a laugh with him, or just to sit with him and to reminisce about fun we had in the short time we spent together as children.

My brother had a passion for motorcycles, he loved the outdoors, and he was a hard worker. I wish I could tell you about the sparkle he had in his eyes when he was telling you a joke, or explain that because he was so tall I felt like a little person when standing next to him. Truthfully, I cannot share these things now. Because of my own hesitation and procrastination, I will never know. I have so few fond memories to cherish when the night is darkest.

My grief now is fresh. I grieve for what was lost. I grieve for lost chances that I can never have back. I have learned now how important it is to reach out to the people in my life. I was playing the odds in a misguided belief that time was on my side. I have learned the bitter truth; time takes no sides. All we really have is this moment. Anything beyond it is not guaranteed. We have to make every moment count, because we don’t know if it will be our last.

When Spines Throw You Curve Balls

My daughter Gabrielle is seven years old. She was diagnosed with Idiopathic Juvenile Scoliosis 1 year ago. In layman’s terms, for an unknown reason, her spine, instead of growing straight, has started to curve. Idiopathic scoliosis affects approximately 3 children out of every thousand under the age of 18. Children who are diagnosed under the age of ten are rare.

Gabrielle’s spine is curving in three separate places. The most prevalent and most dangerous curve is right between her shoulder blades. The curve is causing her rib cage to rotate, and without treatment could eventually impede her heart and lung function. In an effort to try and prevent her spine from curving any more while she grows, Gabrielle is required to wear a TLSO brace. This is a hard plastic brace that goes from her armpits to her hips. She is required to wear it 23 hours a day.

Anyone who has an active six year old can understand my dismay at trying to understand how to manage such a restrictive apparatus. When she was first fitted with the brace, it looked more like jail than a treatment. It is very tight, and it restricts her movement in the torso area. The first day that she wore it, she had it on for an hour. Watching her just trying to sit down looked uncomfortable, and picturing her wearing it, to me at least, looked like torture.

The hour seemed endless, and after we took it off of her, her skin looked angry and red in the places that made contact with the brace. In order to toughen her delicate skin, we had to vigorously rub all the red areas with alcohol wipes to prevent sores or blisters. No matter how logical this seems in theory, most children – and even many adults don’t wilfully submit themselves to torture even if it is good for them. Each day, we extended the time in the brace by an hour until eventually she was wearing it all of her waking hours.

Gabrielle has spent the past six months in her brace wearing it 23 hours a day. In the beginning, we always seemed to be focused on the things that she couldn’t do while wearing her brace. She couldn’t pick her toys up off of the floor (she milked that one), couldn’t completely dress herself any more, she needed help in the bathroom, I had to boost her into our Jeep, she needed help getting out of bed, the list seemed endless. The first time she tried to maneuver herself down our snow covered walkway she slipped and fell backwards and became stuck on her back in the snow. When I went to help her up, she reminded me of a turtle that had flipped over on its shell.

Thankfully, children are adaptable. As the months have gone by, Gabrielle has learned to do almost everything that she did before. She is even able to put her toys away again (after I found her kneeling to pick up money one day). We have even learned some bonuses to spending all of your time in a hard plastic brace. She is never cold and rarely needs to wear a jacket, If she is walking with her friends, she can lay down and her torso becomes a portable bench that seats two, She doubles as a snow shovel if we get stuck, I have a hard surface to write on whenever she is with me, and when I wake her up in the morning, her brace supports my weight as we have our morning snuggle.

The prognosis for Gabrielle is uncertain. The hope is the brace will keep her spine from curving any more than it already is. Unfortunately, as many as 95% of children diagnosed with scoliosis before the age of ten go on to require spinal surgery to prevent progression of their curves. I have chosen to focus on what we need today, and let tomorrow take care of itself.

Gabrielle’s brace has become a part of our everyday life. In the beginning, she used to ask me why she had to have scoliosis. As a parent, I felt frustrated because I had no answer to tell her. Today, I have heard her explain to people that there is no why. “It just is.” In the end, it has been my young daughter that has taught me that no matter how “crooked” life gets, acceptance allows us to realize that it isn’t good or bad – it just is.