First Born
I wrote, edited and ultimately scratched two other posts before this one. I had thought that I needed to ease back into this blogging thing...develop some sort of rapport with the limited number of people who are actually reading what I write. I wanted to leave you with more of a positive, feel-good vibe than one that felt like you needed to offer me sympathy. But I got quiet with myself this morning and realized that I'm not being authentic and real if I try too hard to sculpt the direction this blog takes. I realized I needed to write about M, my 14-year-old son. M with his old soul, gorgeously sculpted jawline, blue eyes that don't lie, and smile that is never faked. M who in (thankfully) less frequent moments can turn from the mild-mannered, gentle boy to someone in a blind rage seeking to inflict hurt on his parents or caregivers as if to say 'I need you to feel a fraction of the pain I live with all the time!' This is the person who in just 14 years has had a bigger hand in shaping me into who I am than any other. I am not always proud of 'me' but I am proud to be his mother, and as I grow older and wiser, I try to offer myself grace and realize that I am doing the best I can with the life I have been blessed with.
Rather than go into detail just yet about the regression my sweet boy has experienced in his short life, I will just type out the many labels and diagnoses he has received. I am doing this for those of you who have found my blog through the special needs community in case you or your child have been given the same diagnosis or label. You are always welcome to contact me privately if I may be of help in giving you comfort or sharing information on any of these attributes. I have learned through the years how important it is to know that we are not alone.
(I am sharing these in the order I can recall them being given to M by doctors and therapists)
Sensory processing disorder
Intellectual disability
Accomodative Esotropia
Regressive autism (he had 100s of words until he regressed between the ages of 5 and 7 into severely affected, non-verbal autism)
Low motility
Hypo parathyroid disease
Precocious puberty
Auto-immune affected GI disease (includes enteritis of the small bowel, ulcerative colitis, gastro esophageal reflux disease, proctitis and a heavily eroded duodenum--all by the age of 10)
Intractable epilepsy
Moderate chronic kidney disease (Stage 3 of 5)
It is hard for me to type those out in a list. Though I process each one as it has been uncovered, when I think of them as a whole it hurts my heart. Why does one person have to be dealt so many hardships in his innocent life? Why does my son have to experience such pain and frustration? I suppose one of the main reasons I am blogging again is to be able to ponder those questions on a deeper level.
My 40s have been so full of introspection that at times I have felt myself extremely angry at life's circumstances despite the many blessings I have received. I have spent a lot of time learning about and cultivating self compassion. I have become a master in self-care and am working on removing the guilt I sometimes feel when tending to my own needs. Some people call this phase of life a mid-life crisis, but I call it a mid-life awakening. I desire to be as pure and good as my M is. And yet, I admit that I am tired. I am tired of wiping bottoms, bathing and dressing my son. I am tired of hiring babysitters when I need to go run an errand. I am tired of not being able to go to restaurants, movies or vacations as a family. I.Am.Tired.
How does one honor their own passions and dreams when life doesn't necessarily play out as you thought it would...I am trying to figure that out!
Has your life taken you down a path you didn't expect it to? In what ways has that helped shape you into the person you are today? In what ways has it held you back from following your dreams?
