When Jackson was first diagnosed I searched high and low for books by special needs parents and their experiences. I found a lot of good ones but mostly the stories were those where the parents just lived in this kind of grieving stage and just couldn’t move on. Of course, a lot of these parents were dealing with things I haven’t (thankfully) had to deal with. Numerous hospital stays, scary medical emergencies, g-tubes, breathing tubes, etc. So early on I decided I was going to write a book about our journey. One that would truly capture the highs and lows of raising a special needs kiddo. But between all the appointments, work and life my book kind of faltered. That’s when I got the idea for a blog a few weeks ago. I figured it would motivate me to write and I could share our experiences with our friends and family and anyone else who was interested. It definitely has motivated me to write. Now that I know people are reading it, I can’t wait to share the stories of Jackson and our trials and joys. I didn’t, however, realize how healing it was going to be for me. My last post was a difficult one. It took me all day to write and a lot of tears to finish. Once I posted it, walked away from the computer, and went back to my life I realized a couple of hours later that I felt better. I had been sad and tearful for the 4 days prior and dealing with emotional stuff that really sucked. Posting those feelings made my shoulders feel lighter. Now I’m realizing the blog is not just my way of sharing, it's a way to help me get through the tough times and a place I can just really say how I feel. Being a parent is so much harder than anyone ever tells you. Being a parent of special needs kid adds a little spice to that parent pot. I am really glad that I have an avenue to share our story with everyone. I am even happier that people are reading it and enjoying it. I want other parents to see that in many ways we have the same issues, but there are additional and difficult issues that come with special needs kids. Now when you see those special kids at Target or the grocery store maybe you will have a better understanding of what those parents are going through and you won’t just feel sorry for them (like I used to). My blog is healing me little by little and I hope it is instilling compassion and love for everyone who reads it. On that note, I found this little story in a book a couple of weeks ago and it really touched me. I’m not a very religious person and I definitely have my issues with “God”, but this was kind of cool and I want to share it. It’s called “God does work in mysterious ways” and it is written by the ever popular Erma Brombeck (I don’t know the year it was written). Enjoy:
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia.”
“Rutledge, Carrie, twins, patron saint… give her Gerard. He’s used to profanity.”
Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”
The Angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from her child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as a few people ever see my creations.
“I will permit her to see clearly the things I see... ignorance, cruelty, prejudice… and allow her to rise above them all. She will never be alone, I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”
“And what about her patron saint?” asks the angel, his pen poised in mid-air.
God smiles. “A mirror will suffice.”