To You, My Sisters....

I read this while visiting a friends caringbridge page...Rach, thanks for posting this and thank you to the amazing people who wrote it!


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 wellworn.
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, bloodtests, 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 schoolboards
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 in 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.

Making of a LONG night....

Shunt Boy is not sleeping through the night. I can get him to go to sleep but he is up at all hours. "My head hurts! My head is going to explode! My leg hurts! My feet are 'nailing'!" and our list goes on and on. Last night after 1:30am I decided it was time to head to bed as the boy was driving me nuts. We got settled into bed I am guessing around 1:45am and the boy could not sleep. Toss and Turn, sit up in bed because it makes his head feel better, "Mommy, are you sleeping?"

Finally sometime after 3am he finally fell asleep, or at least laid quietly in bed. I felt myself in the early stages of sleep when I could feel someone watching me. I decided to ignore it because I was dog tired and I hear, "MOMMY!!! I NEED MOTRIN! I DON'T FEEL SO WELL!!!!" My eyes fly open as I about fall out of bed from a little person yelling in my face. It was 4:02am. I said, come on lets go get motrin and I will get you back into bed. "No mommy! I want to sleep with you." I tell her the only place that is open is at the foot of the bed. She is cool with that. I give her a pillow, go get her motrin, medicate her, tuck her in and get myself back into the small sliver of bed that I get.

HACK HACK HACK. UGH MY HEAD HURTS. HACK HACK HACK. OUCH!!!! MY HEAD HURTS!!!! Gabe starts yelling, MAKE HER STOP I HAVE A HEADACHE. He is awake, she is awake, *I* am awake. This goes ON and ON and ON! I was too tired to get out of bed. I reach over and push at Darren who has slept through all of this (Lucky bastard) and wake him up.
Me: "Can you PLEASE go get her cough medicine?"
Him: *** WHINE WHINE WHINE***
Me: "Can you PLEASE go get her cough medicine?"
Him: "I have to work tomorrow!"
Me: "Get your ass up and get her cough medicine. I have been up with Gabe until after 3am and she started at 4am. It is now after 5am and I have had less than 50 minutes of sleep and I am getting really really really effing crabby. You do not leave for work until 2PM. GET HER COUGH MEDICINE...NOW!"
Him: "You don't have to be so crabby about it!"
Me: "And you can stop whining like a toddler and do your share of the middle of the night crap"

Hannah went with him to the kitchen. Drank water, took some cough medicine and I must have fallen asleep. Then all of a sudden I feel someone pushing on my shoulder...

Me: "Gabe, stop it!"
Gabe: "It's Daddy!"
Me: "WHAT!!!!!" (Now I KNOW I am being crabby. I am building on 5 years of sleep deprivation here)
Darren: "I just wanted to tell you that I gave her medicine!"
Me: "You HAD to wake me to tell me that???"

Literally in 45 seconds he is sleeping away.

HACK HACK HACK

STOP HER MOMMY

HACK HACK HACK

STOP HER MOMMY

Finally I tell Gabe. I cannot stop her until the meds work. If you are tired of hearing her cough go to your own room or go to sleep in Hannah's bed but don't tell me to stop her!

The last time I looked at the clock it was after 6:15am.

8:30am I hear...
*** KNOCK KNOCK KNOCK*** "Mommy, I haffa pee!", "MOMMY, I haffa pee NOW!!!"

I pull my nearly dead body out of bed, go to Fayeth's room and open the door. She is completely undressed, pull up off and she shoots out of the room yelling, "I HAFFA PEE NOW!!!"

What ever happened to my little waking up with, "Good Morning Mommy! I had a GOOD rest. GOOOOOOOOD rest?"

On a good note, I must get a pic of Fayeth. Monday I cut 3 inches off her hair. Her hair is still under her shoulder blades and she has transformed into a little girl and not a baby. *SIGH* We just love her!

It is Fixed....

My washer is fixed. I have a brand new basket in there. WOOHOO!!!

Gabe is not sleeping at night. Maybe 1 night every week. He now has a few new shows that he likes:

1. Trauma Life in the ER
2. Code Blue
3. Mystery Diagnosis
4. Medical incredible

So, my Neurosurgeon to be has been having a good ole time while Mommy looks exhausted. :)

Washing Machine...

Only another 72 hours until I can do laundry again.

2008...

Started out with our good friend Tummy Flu. The same night Lindsay, Gabe and Fayeth really started puking a lot, the washing machine died. A house of 6 people and the washing machine died while 3 have the tummy flu. That sucks!!! My mother loves me and has washed the load of laundry that needed to be washed. Thank you mommy!

Today the repair man came to give us an estimate on fixing our washing machine. The repairman walks in, "Wow! You have a lot of kids!"
Me: Just 4
Him: Thats all?
Me: Yep, I don't think that my husband has snuck any extra in on me.

He starts taking my washing machine apart. "Wow! The basket is broken. You must do a lot of laundry."
Me: Ummm, you did say I have a lot of kids ** said dripping with sarcasm **
Him: I have never seen a basket break like this. You do a lot of laundry.
Me: Actually I do not. I only wash clothing after the children have wore it 5 times. No matter how dirty the outfit gets. ** Flashes him a smile **

So my basket will be here and washing machine will be fixed by NEXT FRIDAY! UGH! Darren will be going to my moms or the laundry mat this weekend. =)



Gabe is sick, again. He started vomiting last week and not it is this freaky I puke within 30 minutes of getting up in the morning and within a few minutes of going to bed at night. Twice a day. To top it off he is now coughing and has nasal congestion. So not only does his head hurt because he has increased pressure on his brain, he has head congestion. To top that off he is coughing savagely. He is a mess and feels crappy. He complains that his shunt reservoir and valve area are hurting him. It is hard to touch. The reservoir is like a rock. I sent an email off to F rim this even asking him about this freaky vomiting thing and this is what I got in return,

"Gabe may have caught the same flu that Hannah had, but given his unusual brain stem and intracranial situation, he will be affected much more with each stress like that. I could still guess stomach flu of some kind coupled with his unique sensitivity to vomiting stimuli, etc. The vomiting will cause more CSF to be pushed through his shunt and eventually he will end up with over drainage headache to go with everything else.

Please let us know what happens over the next few days. I have cc’d Sheri as I am out of town and my email is a bit spotty.


DF"

Nice to know that my son has an unusual brain stem. ;) Gabe's shunt will drain extra with the increased force of vomiting and coughing. Hence how he can/will get an over drainage headache. So we are germy, yet again. UGH!