A message from Joyce: Several weeks ago, August 21st to be exact, I wrote about a relative that was unhappy with a blogpost I had written and she called to let me know. That day, I felt many emotions. Mostly anger. But as time went on my anger turned to hurt. What the caller was really telling me is my feelings aren't important. What I was revealing in the original post was how I felt on a certain day. Shortly after Sarah's birth. I was trying to help my readers understand that those first few days, even weeks and months are hard. Very hard. And a whirl of emotions is involved. Yet, life has a way of working out. And twenty years later, life can be beautiful if you let it.
A week or so ago my husband had another conversation with her and again she questioned why I needed to write about what I did. Why did I even need to write about twenty years ago, she wanted to know? The short answer is because I felt like it. Not to mention this is my blog, my and Sarah's blog and we can write about anything we want to. But I don't usually take the short route. My mojo is to take the longer road. To delve into the situation and look for the good that can come out of it. What was the real issue here?
Then last Thursday when I sat down to read the newspaper, this was the headline to the Dear Abby column, " SPECIAL NEEDS CHILDREN REQUIRE SPECIAL PARENTS" Although I might not totally agree with the wording of the heading, the letters that day were directed at an Aunt who had written to Abby complaining about her sister who has a child with Autism and not liking her lack of help in a project the Aunt thought she should be involved in. I remember reading that. It wasn't too much before my dreaded phone call. I'm sure the writer thought that Abby was going to agree with her and say, "Yea, your right. Instead she told the Aunt that she needed to cut her sister some slack as parenting a child with special needs is not easy. "
As I read through these letters I really started to think about this relative. I realized that I could not recall one single time that she ever came to the hospital to see Sarah. In all fairness to her, she lived in another part of Ohio. But still. Sarah spent the better part of her first ten years of life in the hospital. One year alone over 100 days. Am I looking for sympathy? Pity even. Goodness no. Just a request for a glimpse, possibly an understanding that life has not been easy for us. Why be so critical and judgemental? The common thread in the following letters: try walking a mile in our shoes. I would settle for just reading the letters.
DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack. Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- SPECIAL-NEEDS MOM IN ALABAMA
DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I can assure you, that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need. Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box). The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- CINDY IN AUSTIN, TEXAS
DEAR ABBY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again. Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit. There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list. Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- SONJA IN COLORADO
Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at www.DearAbby.com or P.O. Box 69440, Los Angeles, CA 90069.