One of the most frustrating things that is tied to this life I lead, is not “being there” when I so desperately want to be there. You see, there is care giving, and then there is CARE GIVING. When your child has fragile medical needs, it takes an army of people and coordination to do the simplest of things. Your time is not yours.
Friends, or those you thought were friends, have a hard time with this. Without walking in your shoes they can’t believe that you are unable leave your child for a few hours at the drop of a request. Those that love you and “get it” understand, trying to accommodate your extensive needs and try to not be disappointed when there are times that you can’t be there for them. This feeling of failure runs deeply, and rears its ugliness weekly and sometimes daily.
You are at the mercy of everyone else’s schedule. I’ve been at this for 19 years, and it still hits me hard when the event is something that is heart wrenchingly special or an emergency for which you can’t break away. This is especially troubling when the person who needs you is one who has helped our family by unselfish, inspiring ways. You so want to “pay them back”, but can’t. I look to find ways to “pay it forward” instead. Because Sophie’s disorder has many components, I am a part of a number of internet and support groups. Helping to problem solve, brainstorming ideas, and sharing what has helped Sophie lets me give back. I give blood regularly to help others who may have helped us along the way.
We were taught to “be present” for Sophie through a wonderful process called The Son Rise Program. Originally designed to help people with autism, they were willing to take on this toddler with an unknown prognosis and embraced the philosophy that she is writing her own story. So many of the things we learned we have carried over into our everyday lives and while rearing our “typical” second child. It is with gratitude to these amazing people for giving me the tools to help Sophie. Many times being in the moment was perfect for our circumstances. But as her medical needs became greater, it has been harder to carry this philosophy to always be present when I physically cannot.
I try to find other, creative ways to BE THERE.
The internet and technology in general have helped me to connect again with friends lost in this crazy life, and I have found new friends that can hold me up because they walk a similar path. A cyber-hug can do wonders for a Mom who has been up all night. A picture or video from a niece, a grandparent, a friend helps to heal the wound of not being there to experience that play, that huge fish, that 50th birthday party. Missed weddings, showers, recitals, graduations, reunions; the list goes on and on.
There was a time in my life that I refer to as “the selfish years.” In my 20’s and early 30’s I was free to step out after work with a friend for a drink, go on a vacation, make plans at the last minute to do fun and exciting things. I miss those selfish days. I didn’t know at the time that this would be fleeting, that a more selfless calling would take its place. Reaching my 50’s, many of my contemporaries are becoming empty nesters and finding their freedom to go and do what they please. Freedom takes on a different meaning when you are responsible for the safety and life of another. The fantasy of “retirement” is far removed from our vocabulary in this house.
A friend of mine who walked with me during those selfish years is in the hospital right now, and all I do is think of her and that I can’t be there for her in her time of need. She’d understand, I know that, but it still is a wound that won’t heal well. I’ll always have this scar, though it’s not visible on the outside. It will remind me, like a sore knee from that injury you had in high school,of opportunities lost. Of not being present.