A warning to the reader: today is a dark day on the blog. Please feel free not to read any further if you prefer something more upbeat- come back instead next time when I resume with a more hopeful and humorous blog….
Today’s blog will address the physical exhaustion, as well as the emotional and mental pain that are as much a part of the special needs parenting experience, as milestones and progress are. Most of my days are comprised with extremes of both: elation and despair, along with great joy and intense sadness. The “highs are higher” and the “lows are lower” in our world and always will be. I rarely discuss the despairing details of these days because they are just too painful… I will often detach from the sorrow , redirect myself to happier places, and keep moving, because that’s what special needs parents are supposed to do and should do when the chronic challenges of their children’s disabilities threatens to destroy their joy and sanity, right? It’s the “dark side” of our daily experience that we don’t really discuss, but for the sake of our mental health and as a reality check, we must acknowledge it, warts and all. I just choose to do so in this forum, as writing helps me to process my feelings and grief better than actually speaking about it. A good cry is very cathartic too and I do it often.
A friend ( with typical children) had recently told me what an “amazing Mom” I am to Brian and that I am always so “upbeat and positive”. ” I don’t know how you do it” she said, ” and you never complain; Brian is so lucky to have you and Jim”.
Well, the truth is, very often I don’t know how I do it either. And I do complain- a lot! There are also many days when I’m quite sad and depressed. I think a lot of this has to do with the realization that Brian will always require intensive assistance with every aspect of his life, for the rest of his life. Period. I honestly never thought this would be the case. Sure, I knew that some level of support would always be necessary, but it’s the DEGREE of support that I’m referring to. This revelation hit me very recently; I guess I’m a slow learner…
The physical, mental, and emotional toll as a result of raising our kids is cumulative as time goes on. I try to find ways to manage the stress, sadness, and fears. I want to be positive and try to accept things for what they are. I continually seek ways to improve Brian’s life, while taking care of myself. Many days I ask God for endurance, peace, and just a good nights sleep! Sure, Brian has and continues to make progress. I like to share these milestones with family and friends. It’s a positive thing to do and it’s also great to have a historical record of how far he has come along. But there’s also the other side of the coin: the perpetual perseverative behaviors: the incessant vocalizations, the door banging, and the light flickering shenanigans that have gone on for years and probably always will… Or the ongoing medical concerns, the paperwork, and the communication/interaction with the legions of people who you depend on to help you help your child. I personally struggle with the physical care-taking most of all- it’s so repetitious with no end in sight…I have often lost my mind over the years with all of this, but somehow keep finding it! I hope I never lose it for good!
Like our children, we parents are resilient and ultimately carry on like we always do, for what choice do we really have? I just wish for all of our sakes that it wasn’t so hard and that we could become younger and stronger as our kids get older and bigger. I also pray for the grace and courage each day to be Brian’s Mom, especially when I don’t feel up to the task. That’s when Divine Intervention has stepped in through the wonderful people placed in Brian’s life. I just wish we didn’t have to be so dependent on so many people…
The special needs journey with our kids will always be a mixture of ups and downs, and will require a LOT of patience, perseverance, and hope. I can only take one day at a time, one foot in front of the other, in the present moment.. that’s more than enough for me…otherwise, I get too easily overwhelmed and afraid of the future. I have enough to deal with today.
May we all experience the same love, support, and compassion for ourselves that we give so freely to our children. We really can’t parent our kids for the duration without these things! Until we meet again, thanks for reading! ❤️❤️