A Mothers View

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A Mother's View

Written by: Janet Miserandino

My daughter has had Lupus, with the accompanying vast

array of symptoms, since she was 15 years old. During college, in

her attempt to explain her illness, she wrote about Lupus and its

debilitating effect on her energy, by a comparison to waking up each

day with a limited amount of " spoons " . Having spoons has always been

an inside joke in our family. If was having a particularly

bad day, she might call me and say, " Mom, I have no spoons left

today. " As an ultimate good luck charm, even had a silver

spoon hidden inside her bridal bouquet. And I often sign my cards to

her- " May you always have spoons. "

has tried to educate our family, friends and even total

strangers with her analogy. Well this is a view from the other side

of the spoon, so to speak. Having a child means worrying your whole

life about their happiness. Having a child with a chronic illness

means worrying about grades, dating and makeup; but also about pain,

medical tests and future prognosis. Somehow you survive.

is often asked about what it is like to have Lupus. You

see, she doesn't look sick, so she is a curiosity to some, an enigma

to others. Few people ask me what it's like to have a child with

Lupus, and I think it's because they already know- it's every

parent's worst fear. No parent wants to be healthier than their

child.

lives with chronic pain and fatigue and a constant

pendulum swing of good days and bad. Being her mom means struggling

not to be so effected by them, especially the bad ones. I am not so

good at this. I have often found myself overwhelmed and in bed

crying, after seeing in a flare-up, or hearing that down,

resigned tone in her voice. It's a roller coaster ride I would

prefer not to be on. But then there are her good days, and when

is having one, she seems to want to pack a lot of life,

laughter and joy into 24 hours and luckily for me , I have often

been around for the ride. , more than most, realizes the

gift of a " good day', a gift most of us take for granted. Hopefully,

she has rubbed off on me, and I try to appreciate the little things.

I remember once taking home from a doctor's visit and she

asked me to stop for a Mc 's ice cream flurry. I felt rushed

and tried to dissuade her, but she persisted, saying " mom, it's such

a little thing and it will make me happy. " I don't really know why I

remember that so vividly, but I think of it often and I try to

cherish the little things that make me happy, like a warm cup of

tea, or relaxing in my recliner.

Having a child with Lupus means trying to coax her into

experimenting with vitamins, heat, cold, massage therapy, herbs, and

physical therapy, whatever. I always think everything will work,

while approaches life more cautiously and often thinks

nothing will work. She has been known to say I dwell in

Pleasantville, but I like it here and plan on staying. Pleasantville

is filled with hope and promise. I think in dealing with any chronic

illness you always need hope, otherwise you might as well raise your

hands up in defeat- the illness has won.

I used to save my sick days at work for my chronic colds, but for

the last decade I hoarded them and used them oh so sparingly, just

in case I needed them if got sick. I found myself

conveniently sick on weekends, as if my body knew I had no time to

be ill. In reality, I always felt I could never be as sick or as

tired as must feel. That's a difficult one- there's a lot

of guilt in feeling better than your child.

Being ' mom often means waiting a lot. I've become good at

waiting- waiting in doctor's offices, waiting for test results (now

that seems like an eternity), waiting in emergency rooms (always in

the middle of the night), and even waiting for as her

sluggish body tries to catch up with her good intentions. It has

meant being flexible, as plans need to be changed the last minute,

to accommodate her unpredictable flare-ups. I used to feel that

everything was important, but I've learned from that the

world doesn't come to a halt if you are a little late or even have

to miss something. I remember once trying to get her out the door in

order to be on time for a doctor's appointment, and was

moving very slowly that morning. I was upset because we would be

late, but when we got there we still ended up waiting for almost an

hour. A lot of what I worry about never materializes or turns out

not to be as important as I thought. I'm still trying to remember

that.

As a parent of a chronically ill child, I have encountered those who

stop asking about how is doing and how she is feeling,

because they feel uncomfortable with any negative response. I

thought of lying and saying things are wonderful, but most of the

time I just say things are good and bad, which they usually are.

There are those that continually ask about , and I

appreciate their good wishes, concerns and prayers. My closest

friends don't just ask about , they ask about me. It's easy

to get lost in the shuffle. It's easy to remind your child to take

care of herself, and run yourself into the ground in the process. I

have become so much better at being the caregiver than taking care

of me. I am finally learning that lesson from too. I have

seen how important it is for her to take care of her body and her

spirit, and I am thankfully realizing to do the same

On the other side of the spoon it can be depressing. If your loved

one is down, it's a constant struggle not to be down too. Beside

dealing with your own depression, the parent juggles emotions of

fear, disappointment, anger and fatigue; all the while trying to be

optimistic, calm and hopeful. I have learned though a lot from being

on the other side of the spoon. I (along with ) am stronger

than I thought. I have discovered many life lessons about patience,

acceptance and joy for life I have shared many special memories with

, with a greater awareness and appreciation for them. I am

so proud of the woman she has become, not because of the Lupus, but

despite it. I guess I can say the same for me.

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