There is something so special about rocking a child. Wrapping you arms around that warm miniature body...patting their behind with one hand and running your fingers through their hair with the other as your hearts beat against one another. Your calves get a mini-workout as you use tip toes to push off the ground in a rhythmic rock back and forth, back and forth, as you try so desperately to lull the child to sleep. There is something so special about this time...about the closeness you experience for those few minutes. There's something precious about the stillness and contentment that happens as your child's eyes flutter into the initial stages of sweet slumber.Rocking my children is usually one of my favorite pastimes, but lately my heart has become heavy each time this scenario plays out with Nathan. Hoping that it is a transient issue like so many other things with this disease, Nate has been having an increase in his level of fatigue lately. He can still run around and play like a normal kiddo, but his little body seems to get exhausted quicker and stay that way longer than his usual norm. This level of exhaustion is hard to see. My heart literally hurts each time he comes to me saying "I tired, Mama. I so tired." To hear a 2 year old speak that phrase over and over most days is tough, as toddlers are typically known for their boundless energy, and I have personally never heard a 2 year old express their exhaustion in words. For most parents, the solution is simple. Your child is tired; make them sleep. Oh, how I wish just mundane sleep would prevent my son from coming up to me with those droopy puppy dog eyes and muttering the pitiful phrase of "I so tired". But even with adding an extra 2 hour nap in addition to his normal nap each day in hopes of helping him "catch up" on whatever energy he is lacking, it seems to all fall into a deep dark hole these days. Sure, he has good bursts of energy from time to time, but mostly, he is just...so...tired. And it hurts to see him that way.We try to make life as normal as possible for Nathan and the girls. Our days are filled with school drop-offs and pick-ups, grocery store outings, cartoons, books, and play dates. Naps for the little guy fill a majority of our day, but we still do get out and enjoy the day. Is it too much for him? Is it the heat? These are questions that I ask myself every day. If he has such difficulty handling everyday life here right now, how will he do during our summer jaunt of the beach and pool and this and that and the other? We seem to constantly be struggling with how much we want to do as a family and how much Nathan can handle...but we never know how much is too much until he crashes. Will we ever find that right balance?
Some days are just difficult. Some days I wish all of this would just vanish and I wouldn't have to wonder over and over why my son has sunken eyes today and the desire to sleep or just sit around for a good portion of the day and be completely ornery the other part of the day. Some days I want normal. Some days I want my heart to stop hurting; my mind to stop going to dark scenarios; my brain to stop going through the medical checklist it has memorized in this journey. Some days I want to go back 10 years when my major concern was whether the new shorts I bought showed too much of my larger than average thighs. Some days are just difficult.
Good thing that some days only last 24 hours.