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To You, My Sisters by Maureen K. Higgins


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To You, My Sisters

 

by Maureen K. Higgins -

 

Many of you I have never even met face to face, but

I've searched you out every day. I've looked for you

on the Internet, on playgrounds and in grocery stores.

 

I've become an expert at identifying you. You are well

worn. You are stronger than you ever wanted to be.

Your words ring experience, experience you culled with

your very heart and soul. You are compassionate beyond

the expectations of this world. You are my "sisters."

 

Yes, you and I, my friend, are sisters in a sorority.

A very elite sorority. We are special. Just like any

other sorority, we were chosen to be members. Some of

us were invited to join immediately, some not for

months or even years. Some of us even tried to refuse

membership, but to no avail.

 

We were initiated in neurologist's offices and NICUs, in

obstetrician's offices, in emergency rooms,

and during ultrasounds. We were initiated with somber

telephone calls, consultations, evaluations, blood

tests, x-rays, MRI films, and heart surgeries.

 

All of us have one thing in common. One day things

were fine. We were pregnant, or we had just given

birth, or we were nursing our newborn, or we were

playing with our toddler. Yes, one minute everything

was fine. Then, whether it happened in an instant, as

it often does, or over the course of a few weeks or

months, our entire lives changed. Something wasn't

quite right. Then we found ourselves mothers of

children with special needs.

 

We are united, we sisters, regardless of the diversity

of our children's special needs. Some of our children

undergo chemotherapy. Some need respirators and

ventilators. Some are unable to talk, some are unable

to walk. Some eat through feeding tubes. Some live in

a different world. We do not discriminate against

those mothers whose children's needs are not as

"special" as our child's. We have mutual respect and

empathy for all the women who walk in our shoes.

 

We are knowledgeable. We have educated ourselves with

whatever materials we could find. We know "the"

specialists in the field. We know "the" neurologists,

"the" hospitals, "the" wonder drugs, "the" treatments.

We know "the" tests that need to be done, we know

"the" degenerative and progressive diseases and we

hold our breath while our children are tested for

them. Without formal education, we could become board

certified in neurology, endocrinology, and psychology.

 

We have taken on our insurance companies and school

boards to get what our children need to survive, and

to flourish. We have prevailed upon the State to

include augmentative communication devices in special

education classes and mainstream schools for our

children with cerebral palsy. We have labored to prove

to insurance companies the medical necessity of gait

trainers and other adaptive equipment for our children

with spinal cord defects. We have sued municipalities

to have our children properly classified so they could

receive education and evaluation commensurate with

their diagnosis. We have learned to deal with the rest

of the world, even if that means walking away from it.

 

We have tolerated scorn in supermarkets during

"tantrums" and gritted our teeth while discipline was

advocated by the person behind us on line. We have

tolerated inane suggestions and home remedies from

well-meaning strangers. We have tolerated mothers of

children without special needs complaining about

chicken pox and ear infections. We have learned that

many of our closest friends can't understand what it's

like to be in our sorority, and don't even want to

try.

 

We have our own personal copies of Emily Perl

Kingsley's "A Trip To Holland " and Erma Bombeck's "The

Special Mother". We keep them by our bedside and read

and reread them during our toughest hours. We have

coped with holidays. We have found ways to get our

physically handicapped children to the neighbors'

front doors on Halloween, and we have found ways to

help our deaf children form the words, "trick or

treat." We have accepted that our children with

sensory dysfunction will never wear velvet or lace on

Christmas. We have painted a canvas of lights and a

blazing Yule log with our words for our blind

children. We have pureed turkey on Thanksgiving. We

have bought white chocolate bunnies for Easter. And

all the while, we have tried to create a festive

atmosphere for the rest of our family. We've gotten up

every morning since our journey began wondering how

we'd make it through another day, and gone to bed

every evening not sure how we did it.

 

We've mourned the fact that we never got to relax and

sip red wine in Italy . We've mourned the fact that our

trip to Holland has required much more baggage than we

ever imagined when we first visited the travel agent.

And we've mourned because we left for the airport

without most of the things we needed for the trip.

 

But we, sisters, we keep the faith always. We never

stop believing. Our love for our special children and

our belief in all that they will achieve in life knows

no bounds. We dream of them scoring touchdowns and

extra points and home runs.

 

We visualize them running sprints and marathons. We

dream of them planting vegetable seeds, riding horses

and chopping down trees. We hear their angelic voices

singing Christmas carols. We see their palettes

smeared with watercolors, and their fingers flying

over ivory keys in a concert hall. We are amazed at

the grace of their pirouettes. We never, never stop

believing in all they will accomplish as they pass

through this world.

 

But in the meantime, my sisters, the most important

thing we do, is hold tight to their little hands as

together, we special mothers and our special children,

reach for the stars.

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As I lay on the cot in the PICU next to my 8 year old son who is getting plasma exchange for PANDAS I have to say this poem made me tear up. I am trying to hold it together this week so I am not going to read it again for fear I may crumble. I have to say though that after seeing some of the kids here today...if I put my problem in the middle of the room to compare woth the other parents here...I would gladly take mine back.

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As I lay on the cot in the PICU next to my 8 year old son who is getting plasma exchange for PANDAS I have to say this poem made me tear up. I am trying to hold it together this week so I am not going to read it again for fear I may crumble. I have to say though that after seeing some of the kids here today...if I put my problem in the middle of the room to compare woth the other parents here...I would gladly take mine back.

iI hope all goes well, and I will keep you and your family in my prayers!

~Karen

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I am glad to hear you got to go ahead with the treatment as originally planned. Please keep us posted on how things are going. Did you get to see Dr. Latimer at all? Take care and God bless your family during this difficult journey. I hope to hear from you soon.

 

Michele

As I lay on the cot in the PICU next to my 8 year old son who is getting plasma exchange for PANDAS I have to say this poem made me tear up. I am trying to hold it together this week so I am not going to read it again for fear I may crumble. I have to say though that after seeing some of the kids here today...if I put my problem in the middle of the room to compare woth the other parents here...I would gladly take mine back.
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Mommd-

 

Hang in there!

 

I hope (we all hope) this is the answer for your son. You have been so brave. I admire how fast you have worked, your son is lucky to have you!

 

Please keep us posted, and at some point, tell us about the whole experience. I am considering pex at Gtown with my daughter, at some point...

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We have not seen Dr. Latimer at all but the intensivist saw her last week and got the plan together. We are supposed to do three PE treatments. Unfortunately we had to abort the onelast night. He had his femoral line placed at 2pm last night and then the meds that they used to sedate him made him nauseous. They tried to do it sonner but they had a hard time starting the mainline because he was so dehydrated. (Note to anyone who has this done, get a early am time to put the line in). We scheduled it loast week and got an afternoon time. They did not start the PE until 7pm and he had some wheezing and hives after 20 minutes(apparently this is a common reaction) and they were going to give him albuterol and more benadryl and then he started having severe leg cramps and screaming. His Calcium was fine and I think he was just severely dehydrated when we started. The lady running the PE said they like the patients to have a big breakfast before they do this. We hydrated him all night and will start at square one this morning. I will keep you posted.

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You poor thing. It has been so rough on you guys. You are a mom warrior. Please post us an update when you get a free moment. God bless you all.

Michele

We have not seen Dr. Latimer at all but the intensivist saw her last week and got the plan together. We are supposed to do three PE treatments. Unfortunately we had to abort the onelast night. He had his femoral line placed at 2pm last night and then the meds that they used to sedate him made him nauseous. They tried to do it sonner but they had a hard time starting the mainline because he was so dehydrated. (Note to anyone who has this done, get a early am time to put the line in). We scheduled it loast week and got an afternoon time. They did not start the PE until 7pm and he had some wheezing and hives after 20 minutes(apparently this is a common reaction) and they were going to give him albuterol and more benadryl and then he started having severe leg cramps and screaming. His Calcium was fine and I think he was just severely dehydrated when we started. The lady running the PE said they like the patients to have a big breakfast before they do this. We hydrated him all night and will start at square one this morning. I will keep you posted.
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