Ain’t doing that again …
I am having trouble believing the responses to the last post … morons do really say the darndest things. Well, it will be a cold day in hell when I ask for you to share stuff with me again … 😉
When Pearlsky was about two years old (undiagnosed, seizures, completely delayed, etc.) we found out “we” were pregnant again. There was no way to test for the problem since we did not know what the problem was. Very scary time.
I told those close to us that we were expecting another child. I could tell that most were nervous for us and hesitant to say anything. I told a close friend of mine (may he rest in peace), a fascinating and great guy. This was before email; later that evening a fax came in. Handwritten in large letters was the following:
Courage has its rewards
Turns out, he was not quite on the mark, but it was probably the single greatest thing said to me concerning the entire situation.
As I said, I am not going to ask you to share stuff with me again, too depressing. BUT, if you happen to want to without being asked … what positive things have been said?
Ok, I’ll follow up on mine…my doctor said something nice when he announced my new healthy baby’s time of birth(6:13), which was the same as my (stillborn) son’s birthdate(6/13). I think it was a message from God to love her wholeheartedly. That was awfully nice.
Thank “the Holy One, Blessed be He”! I was considering a potentially rude interjection of “stop this!” on that post.
The nicest thing ever said to us (Hubs and I) was that after all the obnoxious-behavior-teen years your real child will come back to you. We are counting on this being true, desperately.
While I’ve heard a few rude comments, I must say that the positive comments greatly outweigh the negative ones.
“You’re a great mother.” – My Mom – In – Law (an absolutely wonderful lady who also happens to be a PT), husband, therapists, doctors, and various other people along the road. While I certainly don’t do what I do for the recognition, a pat on the back is really encouraging.
The one that stands out the most, however, was from a friend of ours from Monkey’s rehab hospital who was in a wheelchair after surviving a spinal cord injury. He stopped me in the hallway one day when Monkey was a toddler and said, “Every time I see your little boy, he makes me want to work even harder.” That one really touched me.
A neurologist once told me that if Sophie were her daughter and someone told her that a rock on the moon would stop the seizures, she would be on the next spaceship. This was her response to a question I asked her about trying alternative therapies, and I found it utterly affirming.
I think that people tell me all the time what a great girl my daughter is, how truly nice she is (and she can be mean when she wants to be), that she has fine middot (personal characteristics), that she is really a sweet caring girl, and that it is all in my zechus (merit).
Also I am always shocked when specialists, doctors, therapists tell me that, “You are one of the best parent advocates I’ve ever met.” “You really advocate for your child and I can tell you what a difference that makes for a child.” “You are a phenomenal parent.”
Oh shoot. I read these posts in the wrong order. Sorry for that last one. Probably the best thing anyone said was just last month, when our old rabbi wrote tome he’d learned so much from our experience with Natan, and the synagogue was better from us having shared with them. I sure don’t like hearing *I* needed a test or to learn something from his death, but I don’t mind other people came out as better people on the other side.
(I hope that this comment does not turn out to be one of the ones that belongs in the moron post below.)
For Jews, the number 613 is extremely meaningful. It is the number of all the commandments that God gave to the Jewish people. Six hundred and thirteen is a symbol of completion and whole-ness, something in which there is no lack. Were I in your shoes (and believe me, I know that I am not), I would find a tremendous comfort in having a child born at 6:13. I would hear God telling me that this child is a special gift.
“Congratulations” is always nice to hear.
When a good friend (who happens to be an ER doc) told me what a great parent I am to my son, I demurred and said “I’m not heroic; he’s my son. I simply do what ANY parent would do”. She shot right back, “No, that’s simply not true because I have seen otherwise”. Made me think and made me feel better.
Here is the somewhat sad truth.
Anything positive that is said to me generally tends to bounce off of my head and land somewhere nearby. I vaguely have a recollection of its approach and its collision with my brain, but I have such a difficult time accepting it and processing it lately that it is almost wasted on me.
Julie, now that is now officially the nicest thing anyone has ever said to me about both my babies. My baby is now a 16 year old girl, and a jr. in high school. Thank you!
Well, since I dumped more than one downer on you the last time, I feel obligated to give a few positives:
I often, sometimes daily, have someone tell me that my love for her shines bright in my eyes, especially when I speak of her.I need to remember that when the dark, heavy days,seem to cloud my vision.
A neonatologist said to me, one night while I was slumped against the wall, wondering how I was got to this place and how I would find my way out,she said, ” I have no doubt, Zoey will show you the way.” And she was absolutely right.
Once, when explaining to a 10 year old, what Down syndrome was,I finished and he paused and said, “Is that why she is so beautiful?” … I should talk to children more often.
I know there is more. Probably lots. Just at a loss at the moment. Been one of those days.
This is really cool to read. Thanks for sharing 🙂
19 years old
It never ceases to amaze me when people who are in professions that should have given them the experience to know better, say the worst things. Roo’s ESD Case Mgr., whom we started out really liking, once said to me that she believed Roo was exhibiting challenging behaviors because I didn’t spend enough time with her. “At home mom,” with her nearly 24/7, at her side through all her medical complications, dropped almost everything else I was doing prior to having her, guilty over not spending enough time with her older sibling, etc. Guess that still wasn’t enough…. That said, overall we have received far more positive comments than negative, and are very thankful for that. The worst we receive now are people underestimating her immediately due to her diagnosis, and people who think they are offering kind words, but are wrong. I am a person of faith, but I always tell people, that if they believe “God only gives us what we can handle,” then if we truly do have the opportunity to meet God face to face one day, I have some questions for Him!
After so many friends and relatives kept dishing out all the usuals of “G_d’s plan” and “He’s beautiful, he’ll outgrow it,” our party hardy young neighbor said upon hearing there was an unknown neurological problem, “That must be really tough for you.” Bless Adam, wherever he is today, for saying exactly what I needed to hear!
Because I am a total nerd, I was playing around with the “translate” function. It apparently thinks names are words that need to be translated, so Kathy Young translated into Hebrew as Kati theYoung. Kati haTzaeer. Okay, not funny, but it tickled me.
Just dropping by to wish you a shana tova.
I have had many positive things said to me regarding my daughter over the past 22 years, but what stands out most in my mind is how my nonverbal severely handicapped daughter is known by and receives acknowledgement by more adults and kids in our community than I ever have or will. When we are out people who I have never met will come up and speak to her by name. It amazes me how she is able to draw people into her world. I feel privileged that through her I am allowed to see the goodness in total strangers.
By the way this is my first post to your blog or any blog for that matter, so I just wanted to say Pearlsky is one lucky young lady!
I have scoliosis for which I am about to get two surgeries to fuse my lumbar vertebrae and lift my ribs out of my pelvis, where they decided to settle down and raise all kinds of hell.
Despite all that I lead an active life, have a great career, a husband who is far too good to me and three nearly grown kids. I still get remarkably insensitive comments from people about my cane and back brace but when my kids were little I got some real winners such as:
“Why did you have children if you can’t run around with them?”
“Is it fatal? I hope you at least live to see your children graduate from high school.”
“How did you get that way? Was it from having poor posture? I tell MY children to stand up straight.”
“Your husband must be a saint.”