Soon after being told my marriage was over, my daughter and I moved into a small one bedroom apartment in the middle of Northeast, DC. My possessions were few and my furnishing was meager. Many times my daughter (then age 6) and I shared a twin bed. One day, as children do, my daughter caught a serious cold. What mom doesn’t want to hold and sooth their child when they are not well? So she slept with me. During the night I noticed she was warm and removed her shirt to wipe her down with a cold cloth.
On my way to the bathroom I heard a rattling sound reminiscent of windows and knick-knacks clanking in a house from the force of a train passing by. After a few seconds I realized it was coming from the bedroom. I ran in to find my daughter’s mouth foaming and her body locked in full seizure. The shaking was so intense until the metal bed frame left scratches on the wall. After that night, life would never be the same.
It has been years of EEG’s, medications, adjusting medications, side effects from medications, leaving work for doctor appointments, sleepless nights, worry about every twitch and blank stare, on and on. Dealing with what doctors describe as a chronically sick child is one of the loneliest things you can experience. You don’t want to burden others with what is your responsibility, your child, so you don’t share much. Explaining to others that there is no real solution to the problem doesn’t make much sense to you and sounds even crazier when you say it to others. So you press through in silence; alone.
Your eyes are always peeled and ears perked for any warning signs so sleep becomes a luxury. You over-compensate for the times their issue caused them to miss school or a social activity by taking them out for their favorite dessert or to see the latest movie so treating yourself becomes non-existent. They are already going through so much and you never want them to feel the true weight of life as it so with them you only celebrate the positives and in solitude silently cry when they have fallen asleep.
It only takes a moment for life to change. After 9-11 I interviewed recording artist Fred Hammond about the collapse of the World Trade Centers. He reminded me that there are towers coming down every day in people’s lives. One of his band members had been recently diagnosed with cancer. For a young man, that hit to his health was a tower he thought would always stand, falling down.
There are so many directions I could take this post. The main thing I want you to know is that you are not alone. Whether your child has health challenges, physical limitations, or mental/emotional concerns, you are not alone. The doctors will not serve as you or your child’s social and emotional advocate. You will need to play that role. It is as important a role as the person who drives them to their appointments or covers the co-pays to medications. But, the person who keeps them encouraged and speaking “Can’s” and not “Can’ts” has to maintain a “Can” in themself first. The elders used to say, “You can’t pour Kool-Aid from an empty pitcher.” Stay filled.
There are so many support groups on social media now. Many meet locally and help carry the load of transporting, baby-sitting, or just talking. Talk to nurses and ask if they know of organizations. Community organizations and churches often have resources as well. Feel free to use this as a platform to connect with others. It is not take care of them OR you. You can and must take care of them AND you. Give yourself permission. You are just that important. Our children came from us and are more in tune with our emotional state than we are willing to admit. There wholeness is directly connected to ours. Life did not change to kill you. It changed to grow you. Stay encouraged.