Here we are at the water park today to celebrate Hazel’s 6th birthday. It was triple digits and as hot as it can be expected to be in the Central Valley. It was hot! But with the water fountains spraying cool water everywhere, and the hot breezes picking up water droplets and carrying them around, it wasn’t so bad. We were in the shade. We stayed hydrated. We played in the fountains and got wet. It was good. It was even better because we all were there for Hazel.
All was good.
Well, except for Daniel. He wasn’t wearing swim trunks because he wore them yesterday. They were rinsed and hung to dry last night but, no, he could not wear them because they were just rinsed and dried. Yes, he could get his clothes wet. Of course it would be okay. His parents and his sisters, all in not-for-long-because it was so hot wet clothes assured him that it was okay, Yes, but no. And so he stood at the edge of the water fountains, watching people running around, getting wet, screaming, yelling and laughing, and he disapproved of it all.
Don’t try to understand. You’ll hurt yourself. Only someone on the spectrum or someone living with and loving someone on the spectrum will get it. You don’t fix this. You don’t force. You just let it be. Of course someone tries to intervene. Someone almost always does…because they know better.
Walk away, I think to myself. Just walk away.
Better yet, stand next to him. Let him talk to you, when he is ready, about whatever he wants to talk to you about. It’s likely to be about Hot Wheels or Legos or the Lego Batman game that is coming soon. Yes, that isn’t very interesting to you. But it’s not about you if you really care about what he is feeling right now surrounded by wet, noisy, crowded chaos and not wearing clean, swim trunks.
I am part of a support group for parents of micropreemies because life in the NICU is scary as Hell and the NICU life…the pain, anxiety and hope never, ever leaves you. You spend, days, weeks, months standing next to your baby’s bedside watching them struggle just to breathe or find yourself facing the agony of making decisions about procedures that may or may not save their lives or spend the first few years re-living those 132 days every time you find yourself back in the hospital with your child, the former 1lb 6oz 24 weeker and you too will find that it never leaves you. No, not even years later. Participating in this group has been good. Parents like us find that we are not alone…even if we feel that way…sometimes…all the time.
The other night I was messaging back and forth with one of the newer moms in our group whose baby boy is only a month old now and, of course, still in the NICU where he was born. Her little guy is doing as is to be expected two weeks post open heart surgery and on a ventilator. He has his good days. He has his bad days. Of course this means that his parents have their good days and they have their bad days too. For her, today was a not so good day as her little man had a major setback and his feedings were stopped again. As she came home from the hospital, she got a call from her dad who has been less than supportive (her words) of the whole NICU journey questioning every decision she has made along the way. Still, she loves her dad and he loves her, so she poured her heart out, tearfully sharing her worst fears after a bad day in the NICU with her baby boy. His response, she shared with me, was most definitely not what she needed or wanted to hear…especially from family, from her dad.
He doesn’t understand…she tells me.
He has no idea how much it hurts me when he says the things he says…
Why is he like that?
Is he ever going to understand how hard this is?
I want to tell her that it is his own fear and perhaps a little guilt that is talking. I do tell her that.
Is he ever going to understand? Is he ever going to just be there for me, for my baby? Without judgment? Without second guessing everything that I do?
I pause and think of my own son, our own NICU journey and the journey that continues on even to days like today at the water park and the people who have been with us, loving us, supporting us unconditionally all the way…and those who have not. I think of those who have grown to love Daniel, accept him as he is, try to understand him, try to relate to him on his terms, learn how to support him medically, emotionally and intellectually…and those who have not.
I sure hope so, I text back to her.
I still hope so…for us…for Daniel.
Our conversation continued on for some time more where I offered her all the patience, love and support that she needed because that is what she needed at that moment.
Meanwhile, today Daniel soon enough on his terms, in his time, stepped into the fountains and got SOAKED!