Raising children when you have a chronic illness - to Cecilia

[Guest guest]

Cecilia wrote:

> My youngest, Evan, was 12 years old, when I started having recurring panc

attacks. He is now 18. There are so MANY times I could not be there with

him/for him because I was either in the hospital having an attack or home so

drugged on pain meds, I don't remember much.

> I am sad when I think about those years that I have missed so many of his

life events.

> Do our kids resent us for being ill and missing out on these and other

important life events? I wonder... I know that I HAVE GREAT REMORSE,

ANGER, FRUSTRATION AND SADNESS at not being there often times

during his teenage years.

>I do try and make special memories with him during times of good health,

>any other mothers suffering from this distructive disease would like to join in

on this dialogue, I would greatly appreciate it. I know I gain great strength

from our collaborative support and similar life experiences.

Cecilia,

The emotions you expressed in your post reallly saddens me - to think of all

those things that you missed. I've often said that I've considered myself most

fortunate in the fact that I got this disease so late in life...I was 49 when

officially diagnosed, but probably the problems started when I was about

47-48. Fortunate, you say? Yes, because by then I'd already been able to

raise our four children and see them off to their adult lives. This sickness

didn't interfere with any of those special years.

I was raising Austin during the time that my battle with CP started, but the

requirements of a solitary 8 year old boy aren't as involved as when the

children are older, and he was (is) not a very demanding child. He had

school, soccer and Boy Scouts, and thankfully, I was able to keep up with

those activities. It was really only the last year that he lived with us that I

wasn't able to participate as much as I would have liked, and then he was

gone with his father. I believe this was all part of God's plan, for things to

work out this way. Now when I have to spend a day or days in bed, no one is

here to suffer because of my illness.

My heart goes out to those of you who are younger mothers and having to

deal with this, or those like you, Cecilia, who have had to live with CP while

trying to raise your children. I know you must feel that you missed so many

important things, but I imagine that most of you have given your " all " to the

children, and made the time you had with them " quality time " , which is more

important than you realize. I've seen a lot of people who's work has kept

them from spending as much time with their kids as they'd like, but once they

left that work, the time and interest they devote to their children is

overwhelming. They concentrate on making that free time completely

commited to the children, not themselves or their own interests....much more

so than someone who's there ALL the time. I don't know if what I'm saying is

understood, but I hope you get the gist of it.

As far as whether or not they resent the fact that you weren't there for some

of the special events, I can't answer for others, but I can explain about my

own youth. Perhaps hearing about my experiences will help you to

understand how living with a parent with a chronic pain illness affected me.

In 1939, my mother was run over by a logging truck when she was 12. She

spent a year afterwards in the hospital, at the mercy of medical expertise that

was a far cry from what we know it to be today. Instead of amputating her

right leg as the surgeons recommended, her parents chose to have her keep

it. This mistake in judgement caused her to spend the rest of her life

physically impaired and in pain every day. Although she could walk okay, her

leg was just an ugly appendage of bone, muscle and skin grafts that caused

her daily pain. She was constantly in pain, on crutches some of the time, or

using a cane. She was on all types of medication and in and out of the

doctor's office or hospital, or home lying in bed a good percentage of the

time. Consequently, she wasn't able to participate in any of the

winter/summer sports activities that my brothers, sister and I were addicted

to. From the age of six, onward, we spent every available moment involved

in competitive alpine skiing, ski jumping, cross country, figure skating, or

hiking, mountain climbing, waterskiing, tennis and swimming. The competitve

winter sports took us away every weekend during the season, traveling to

races all over the northeast. Because of her " sickness " , our mother was only

able to attend a small handful of any of these events over a twenty year

timeframe. We rejoiced when she could be there with us, but when she

wasn't there, we ALWAYS knew she was there in spirit. When we got home,

she would listen, transfixed, to our lengthly explanations of each activity.

That

was " quality time " , and we loved it, and her, for making her time with us so

special.

When my brother ran into a tree in a downhill event and ended up in a 3 day

coma, she wasn't there, she was in the hospital herself. But she was there

for the four months that he spent home in bed with a broken pelvis, broken

collar bone and broken leg, nursing him back to full health. Then when she

got sick during this time, I learned how to empty bedpans and change sheets

with a person lying on the bed while it was done. (I fortunately haven't

needed to use these skills since....;-)). When my other brother and I both

crashed on a slalom course and were taken to the hospital in the same

ambulance she wasn't there, but she was there afterwards to nurse us

through the healing process. She was in bed when one brother got married

and couldn't go to the wedding. We always understood that when she was

well, she'd make up for what she'd missed.

I never resented her absences, and I don't believe my siblings did, either. I

found that when you're raised with a parent who has a chronic illness, you

learn to appreciate the time you get with them even more than someone

who's there every moment. This is just my perspective from my own

upbringing, but I imagine it's much the same for other people.

I do believe that most parent's that have a chronic illness make the most of

their time with their children, often more so than healthy parent's, and that

the

children aren't deprived at all, but enriched by it. My observation of you,

personally, is that you're a woman who's devoted to children's enrichment. I

base that on the fact of what you do.....I mean, why else would you be in the

profession you're in, and a vice-principal? Forgive me if I've got the title

incorrect...but I think that's what you're called (smile). Just based on that,

Cecilia, I imagine that even though you've missed what you think are " life

events " in your son's life, you've more than made up for it in other ways that

he appreciates and remembers you for.

I didn't mean to ramble on so long, but I can understand how this topic would

be an important one to talk about, and to share with others suffering with a

chronic illness. People's anger, frustration and remorse needs to be vented

and shared in a healthy way so that they can release those emotions and not

have to carry them inside the rest of their lives. Discussion may well help

each of us to learn how to deal with it, go through it and on to more positive

thinking, other than letting it self-destruct within.

Think good thoughts,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are based on personal experience or opinion

and should not be substituted for consultation with a medical professional.