mean mama

depressing, incoherent post about difficult stuff. skip this post. i just wrote it to vent. really, it will only depress you. I talk about death and sick kids and stuff.
January 16, 2008, 3:25 am
Filed under: Uncategorized

(This post’s title is not meant to be clever. Read it for what it is.)

Today was not the best. It started out when the boys awoke at 5:15AM and wouldn’t go back to sleep. I knew I wouldn’t be able to either, so I got up with them. Huddled in a mass under a blanket on a huge chair, M tried to fake sleep while J blew farting noises on my bare shoulder.

At 10:15AM, J’s occupational therapist came. She was only supposed to stay with us for 30 minutes, but she was here for at least an hour. We talked at length about J’s progress/lack thereof and what to do. She thinks he needs more therapy than he is getting. She says he has lots of sensory needs and that the thing to do at this age is to “bombard him with therapy,” so that he can develop the skills to play with toys for longer, interact with other kids more fully, and gain muscle mass. If that’s what he needs, I’m all for it. The problem is getting the services. I have a long way to go in understanding our rights, and lack of information makes me feel out of control and very scared. Further, the fact that he is only 26 months and we could still see signs of Autism from now to 3 years is terrifying.

He is not losing any skills that I can see- on the contrary, I think he is gaining them. But, his eye contact is not always great, and he is just spacey sometimes. Not spacey like unreachable, just like he’s tired or something. His attention span is very, very short, though he’s not hyper. Our therapist feels that it is sensory-related (he is under-stimulated) and that it doesn’t look like he’s on the spectrum. No one so far thinks he is. It’s just that it’s “too soon to tell for certain.” Right now, I’m just trying to pull all of my resources to get information about J and about our rights. Fortunately, I have tons more resources than most parents because of where I work, where I’ve worked in the past, and my sister, who has worked with a lot of children with sensory issues and Autism.

So anyway, continuing on with my day. In the late afternoon, the boys and I went out to a local cafe for a cookie and coffee. On the way back, I got a phone call from a friend giving me the news that an old work friend of ours died yesterday, completely unexpectedly. She was a real inspiration to me. For lack of better phrasing, it just sucks.

Warning: don’t read any further if you have a baby, because I talk about infant death and terminal illness here.

I have come to realize, in the past couple years, that anything can happen to any of us at any time. Once you actually know that from the depths of your soul, as opposed to knowing it as a logical fact, it is hard to forget. Yet we have to forget, in order to function without fear or constant weightiness. Once in a while, though, I think about people I’ve known who have died unexpectedly.

When I was in elementary school, my neighbor’s second-born baby girl died unexpectedly. She just got an infection and died a few days later. She was a normal baby being treated at a nationally-renowned children’s hospital. Similar thing happened with my best friend’s family, who lost their first baby well into his babyhood. Then there is my cousin’s husband who was killed instantly in a car crash in his early 30’s. Last year, a friend of ours died of a heart-attack at 47. And now this friend.

I remember when we were told my son J could have cancer. It seemed like my worst nightmare come to life. When we found out he didn’t have cancer, I was so relieved, but at the same time I was so devastated that there were parents out there with kids who *did* have cancer and were fighting for their lives. I mean, how could I know that such injustice and suffering was going on and still be okay with living in this world, especially after experiencing the horror of even thinking my child might be sick. And the thing that separates “they” from you is just luck, it would seem.

With time, I have realized I can’t take on others’ pain, and I shut some of it out. Today it was hard to do that, thinking about the uncertainty of life – of my son’s future and then of any of our futures. We think we will be the exceptions, but… you know. The people to whom things happen were also the exceptions. All I can ever come back to is to enjoy each day to the degree that is possible. I’m glad, despite my being a basket case over my son having a delay that could be worse than I thought, that I took my boys out for a cookie. That’s something, right?

(RIP, my friend. I know you would tell me to get off my sad ass and do something instead of blogging this drivel. I will honor you by eating a chocolate before I go to bed.)


5 Comments so far
Leave a comment

I am sorry for your friend’s death and your struggles with J.

Once you know someone who has had a terrible loss it does change your perspective. My good friend gave birth to twins 6 years ago on January 10. On the 15th, one stopped breathing – no one knows why. He lived on life support for two more days. Tomorrow it will be the sixth anniversary of his death – and his sister’s sixth birthday. When Natalie was small I thought about it every day (especially the first 7 days of her life) and alternately cried and tried really hard to absorb every minute I did have with her because you just don’t know how long you will have with ANYONE.

Comment by Jen (yup, another one)

Er, it was his sister’s sixth birthday last week.

Comment by Jen (yup, another one)

A very honest post. Such painful stuff. I think you are very strong.

A former colleague of mine died unexpectedly last week as well. He was only 46. These things always bring you up short.

Comment by Lo

I’m so sorry. O had an infection that went to his brain lining and caused sepsis when he was 6 months old, and it easily could have killed him had he gotten the antibiotics any later. Even though he was fine within days, that fact rocked my world, and it took a long, long time to get over that awful feeling like the wolf was at the door. It still comes back sometimes. I think it likely that even though things can happen at any age, early childhood is the worst when it comes to feeling like that. Not to pull the “you’re just all hormonal” card on you, but I’m sure being pregnant doesn’t make it any easier.I hope it passes, or at least eases for you soon.

Comment by Emmie (Better Make It A Double)

I’m sorry to hear about your friend and for your pain and loss.

Now that we’ve had a couple of medical “run-ins” with D (NICU, regular 4-day hospital stay in June, 5-day PICU stay in Dec-Jan of this year), I keep having those bad “what if” thoughts…what if next time, we’re not so lucky? What if the third time isn’t a charm? What if we lose her? Yes, she’s fine and healthy now but I can’t stop thinking these thoughts from time to time and I push them away just as quickly as I can.

My therapist says it’s normal and every mother’s greatest fear…and my guess is, since you’ve had some scary medical experiences with the boys, both at birth and for some time aftewards, you know the reality, unfortunately, that babies do get sick (and sometimes, g-d help us, worse–so do grown ups, obviously, and the hurt is just as overwhelming).

May your pain ease with time and may your friend live on in your heart 🙂 And may the coming third child be healthy and his/her delivery smooth and without any surprises or complications whatsoever. Oh, how I wish this for you and the mister!

Comment by Dee

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