21 Apr 2011
“I remember the first time I had sex – I kept the receipt.” ~Groucho Marx
I have been in touch with Aria’s mom and dad, and they are all home and doing ok.
Remembering the first six months with Pearlsky (the first six with David were, unfortunately, old-hat) I can say …
- I did not cry once
- I did not ask “why” once
- I did not curse a god once
- I did not wish I were dead once
- I did not question a doctor once
- I did not question a medicine once
- I did not wish Pearlsky were dead once
- I did not assure my spouse it would be ok once
- I did not wonder what the future would be once
- I did not lie to love ones about what was up once
- I did not look longingly at Pearlsky’s phenobarbital once
- I did not say to a social worker “Where’s your red nose? I thought all clowns wore them” once
Nope, I did not do any of that … just once. Nope, not me. Way more than once.
In a sentence, how did you get through the first six months, starting from when you realized what the situation really was? For some of us, that was birth, others after a stroke or other insult. A simple piece of advice or how you did it. Keep it simple … and if you comment and are not a parent of one of “our kids,” please identify yourself as such.
My advice to new parents … keep the receipt.
It’s not like you have a choice, so you just keep going until you go through the stages of the loss of your perfectly normal child and develop into a parent of a different kind of child.
Moment by moment, breath by breath. Continually hoping that one day, one action, one small step I made forward would make a difference.
Five stages of grief!
Not a parent.
I have a progressive condition, it started to seriously affect my walking when I was 12 years old. I’m 25 now, have no mobility to speak of, PEG fed, can only transfer by hoist, need some nursing care, problems with speech yadda yadda.
I’ve pretty much never stopped saying to myself “When [whatever] happens, everything will be okay again”. When I see my specialist. When my new communication aid arrives. When I finally get those new wrist splints. When they fix the seating on my wheelchair.
It’s a lie, every time. It’s never all going to be okay, at least not the version of okay I still hold in my head. But it gets me through the worst patches, the times of utter despair, terror, frustration so great that it feels good to pound my arm on something until it blotches and bruises – because that kind of pain is so much easier to cope with than the others.
Wow that is a hard question to answer in one sentence. For me it was to let go of what I had imagined my child would be and instead embrace [ and adore 🙂 ] who they are.
I think I was in denial for the first 6 months. I was the one that said everything would be okay. But 10 1/2 years later, it’s still not okay. I’m still angry at times, but her sweet smile, kisses and hugs, and the fact that the only word she says is “Mommy” keep me sane. I pray a lot. It eases my soul.
The first six months were total denial, and assumptions that Marissa would be the rare case of beating the odds, getting the expensive steroid and being fine afterwards.
So, really, the time I should have been learning coping and other related skills, I totally fell down on the job.
By the way…thanks for the Aria update. Glad they are home!
For those who don’t know, our children have no diagnoses. I’m having a difficult time phrasing how I view the grief of the parents of children I treat/serve. Very individual. That feels the most true.
Thanks for sharing the well-being of Aria’s family, SD.
Well, I haven’t reached the six month mark yet but I’d have to say that I have spent the last four months trying to convince myself that I am okay with my dream dying (you know – the dream of having a normal kid who you one day send off to college and watch become a productive citizen? The dream of one day becoming an empty nester?) Some days it works. Most days it doesn’t.
When it finally hit me what it all really meant, I brough down the bill of my (metaphorical) hat to cut off the longer view, and just dealt with the things I could put my hands on. Short-term ‘fixes’, not looking to far into the future. Dealing with the here and now was all I could handle for a good space of time. I’m not sure if Autism counts as one of ‘our kids’, but for a self-centered responsibility shirker (that would be me)the prospect of having total responsibility over the entirety of a persons life for the entirety of that persons life (or my own) couldn’t have required a larger change than if I’d have had to change species.
I got through the first six months holding Sophie in my arms as she screamed and saying over and over, the words of Thich Naht Hanh: “Breathing in, I calm myself. Breathing out I smile” — and then I’d put the baby in the middle of the bed, still screaming, get in the shower, crouch down under the water and wail.
Stagerat: Autism counts as an “our kids”. Recently there was a show on TV about autism that was narrated by Kate Winslet. A mother of an autistic boy tells her story of having a disabled parking placard and parking her minivan in a handicapped spot at the mall. An older man followed her large family in and then accosted her saying no one was handicapped. Well, this mother let him have it and ended up screaming at the man, “You don’t think autism is a handicap?” The mother followed the man out of the mall screaming at him. The issues with autism can be harder in a lot of different ways then having a son with obvious severe medical issues.
I spent the first six months slipping further and further into a deep depression. My mother – in – law was kind enough to take Monkey for a few hours once a week so I could get some work done. Instead, I spent much of that time crying. When I wasn’t crying, I was obsessively researching treatments and possible outcomes. Everything else in my life – my friends, hobbies, and even my relationship with my husband – went on the back burner.
Somewhere around the ten – month mark, I found a group of other pediatric stroke survivor families. It wasn’t a support group/pity party, really, but simply a nice group of people who understood. Just spending time with them helped me to come to terms with Monkey’s diagnosis.
That was way more than one sentence – sorry!
Another mom of kids with significant special needs, yet very different needs than Pearlsky. It has been over 10 years since it was clear that these were lifetime special needs. The first few years were a whirlwind of doctors, therapists, judgemental neighbors, and helpless family. Living just down the street from my completely normal and above average nieces and nephews, each ‘milestone’ is bittersweet as they advance ahead of my (older) kids.
My older (autistic) son asked me the other day if it made him evil to think that life would be easier if his sister (severe mental illness, in residential care due to extreme violence) had died. It isn’t just the parents who wonder these things ‘just once’.
The biggest crack in my heart came when my youngest was dx with autism. After the older 3, why couldn’t I have one ~~just one~~ child without lifelong, dream-altering disabilities.
I spent the first six months fighting. Fighting to keep him alive, fighting to learn how to live again. Fighting for understanding, fighting against the unfairness of the universe. Fighting against this happening to my child and this being my life.Fighting against the ignornace of others.
(I am not a parent of one of “our children”.) In some ways, the most profound and telling thing in this post is your first sentence: “I have been in touch with Aria’s mom and dad, and they are all home and doing ok.” I went to the linked blog. They are really struggling with so, so much–more surgery, more medical problems, and more time spent in the hospital. Yet, that is in reality doing okay. Problems that would have been the size of galaxies before become relatively no bigger than a quark. You, and they, amaze me.
(Sorry, still reading back entries.)
The first six months? I was in denial. I thought we could fix her and everything would be fine…we just needed to figure out what was wrong with her and after that, all the pieces would fall into place. Of course, we never did figure out exactly what was wrong, and she never could be fixed. The horrible thing about this is that I constantly wonder what might happen if we do ever find out what happened to her, and then find out we could have fixed it but it is too late.