From the mom of a "real life Wonder Woman", Raising a Chronically Ill Child".

(guest post from my momma)


There are a lot of misconceptions about chronic illnesses.  You don't "get better", "get over", or "get well" from a chronic illness.  You just learn to live with it.  Think of it this way, if someone loses an arm, you wouldn't say, " i hope you get better".  As if that person can actually grow a new arm!

When Abby first got sick, at 21 months, both Lew (my husband) and i knew our lives would never be the same.  Abby's first doctors at Rockford Memorial were afraid she would die before we got to the hospital.  Then after spending 6 weeks in the University's Children's Hospital in Madison we quickly learned this was not something she would outgrow.  This is something we have learned to endure.  Because Abby was so young, she doesn't ever remember a day that she wasn't chronically ill. She has only known sickness.

 

A few health examples:

When other kids her age were learning to ride a bike, she was too weak to pedal fast enough to keep a bike upright.

At age 8, she had major surgery - kidney transplant.
She had to and still has to avoid more than 20 minutes in the sun at a time.

When she was in 3rd grade, she went to school with a leg bag.  The teacher would keep the lights dimmed and allow her to wear a hat and sunglasses in the classroom.
We had to tell her in 5th grade she could no longer play soccer, to dangerous for her health....what a blow that was to her.

When she went to Arizona to spend time with her grandparents over Easter, one year, she spent all but a day in the hospital.  What kid spends vacation in the hospital?

At about age 10, she had painful, painful shingles which landed her in isolation at Children's Memorial.

Her Junior year of high school, she missed prom because she was in the hospital with shingles, again.

She has had so many surgeries we don't remember an exact number.....we think the count is 17ish now.
Abby will be taking medicine everyday for the rest of her earthly life.

 

 

Chronic illness is something, even on the good days, that lingers in the back of your mind.  It wakes you at night, not just for a night but for years.  It can cause you not to sleep.  It causes you to change the way you think.  You take ZERO days for granted.  You realize EVERY SINGLE DAY IS A GIFT! Sometimes you wonder if that sniffle, upset stomach or slight fever is the beginnings of a huge health problem.  It's not being negative, it is reality with chronic illness.  The reality of chronic illness tells you to have a bag packed for a stay at the hospital, any time.

 

You learn to live with disappointment.  But you also learn to find pleasure and enjoyment in simple things.  I remember being so excited when Abby got perfect attendance for one quarter in grade school.  That was a pretty big deal for me, she just thought i was being dumb.  You learn that people don't know what to say to you.  They stumble over their words and then offer advice or platitudes that make themselves feel better.  The remarks of "keep trusting" and "don't give up faith", all i can do now is laugh when i hear those things.  We have kept the faith for more than 20 years, so you really think we will now?  What really helps is : Romans 12:15 Rejoice with those who rejoice; mourn with those who mourn.   Words are not necessary.  A hug, a kiss, a smile, a note of "thinking of you", cookies, etc. they all go a long way of rejoicing or mourning with us.  Personally, when someone looks me in the eye, with tears in their eyes, that means more to me than anything else.

As a family, we have learned to pray differently.  People tend to pray for bad things to go away or healing for health problems.  And don't get me wrong i have prayed for BB's healing, for years i have asked for this for her.  But why are we so quick to ask God to take away the difficult things in our lives? 
               We can rejoice, too, when we run into problems and trials, for we know that they help us develop  endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation.  Romans 5:3 &4
I have seen more faith in a life that has had many difficulties than i have in a life with a quick healing or few difficulties .  We have been told we lack faith because Abby has not been healed.  Even though those words hurt i realize that person doesn't know us because everything about this life is faith in our Healer God.  I have also seen doctors, nurses, strangers at Wal-Mart (Lori), and many others brought to tears when they hear or witness the difficulties this life produces.  BUT they see in BB, a young lady who has not lost her faith, or her joy, or her love of life and laughter.

Something else we have learned along the way. God can only give good gifts. The strange thing is, when i was pregnant with Abby, i didn't want her.  I had my mind made up, we were done having children. But, from the moment she was born, i was fascinated with her.  She has brought so much joy and laughter to our lives.  It is hard for me to remember why i didn't want her.  And i wouldn't trade anything about her.  Do i wish she didn't have to suffer?  You bet i wish she didn't have a life of suffering. Her life has been a beautiful gift.  Matthew 7:9- 11 says - Which of you, if your son asks for bread, will give him a stone?  Or if he asks for a fish, will give him a snake?  If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!   Enough said.

With 20 years of experience raising a chronically ill child, I have so much more i could say.  I think for now I have said enough.