Showing posts with label spina bifida. Show all posts
Showing posts with label spina bifida. Show all posts

Tuesday, January 21, 2014

You Don't Know What You Don't Know

Daughter Julie who has had a shunt (since birth) for taking fluid build up/pressure off her brain is again having headaches.  Always worrisome since neurosurgery is no walk in the park for her.  It starts off the same way each time she needs a shunt revision, generally caused from protein building up in the tubing leading from the brain to the heart (or lungs, or abdominal cavity or wherever it happens to be placed from the last revision).  The headaches are intermittent, since the blockage in the tube can often be dislodged almost spontaneously, and with no apparent reason for the build up to be cleared by her body's defenses.  But at some point, perhaps a day or two after a shunt headache begins, sometimes after a week or ten days of intermittent headaches, the blockage will not pass down the tubing, allowing for the CSF to be shunted off.  She has had so many revisions and hospitalizations that we have lost count: over 100 at least.  CT scans are always taken, and the results of these scans, to this point after her entire life, have always shown "no appreciable difference in the suture line", although the build up can be so tremendous that she will be in a coma-like state. Mind you, I am not using medical terminology, because by this point you would have almost certainly given up on reading this post.

Julie and Muggsy, 2008

And for over five years, she has been mostly doing fine with this particular shunt and tubing.  And her breast cancer seems to be at bay.  She has a husband who is very supportive, a dog she dearly loves, and aides and nurses and doctors she schedules responsibly.  She is lucky in so many ways, and has stayed out of long term care facilities for most of her life.

The last time I posted about her shunt problems was the time I went to Charlotte, NC to be with her at the Carolinas Medical Center.  You can read more posts about her at these links:


Like my SIL Charlotte says, "you don't know what you don't know".  And we don't know why or how the time comes for a revision, but it will likely be sooner than later.  But it is a concern, of course. Your prayers and concern are appreciated.

Regularly scheduled arts and crafts will resume shortly.

Friday, August 30, 2013

Best Scottish Shortbread Recipe Since Robert Redford

Friend Natalie served Lavender Shortbread cookies last week.  She had tried several recipes using lavender, and declared this was the best one, first published in Sunset Magazine in the 1970's.  Credit goes not only to Nat for finding it, but also to a person named M.C. from East Palo Alto, California for having it published in the magazine.

Daughter Julie's birthday is next week, so I'll be sending her some lavender cookies and some zucchini bread, along with trinkets to open.  For those of you who have followed Julie's progress with her surgeries and her chemo and radiation, she is doing pretty well, all things considered.  She has an aide who comes in twice a day, and great doctors.  Her champion husband Jack takes her to appointments and occasionally they go to Fatz, their favorite restaurant in Rock Hill, SC.


Here is some culinary lavender purchased in Colorado that I used for the cookies:


Happy Birthday, Julie!


Photobucket
And linking with Fiber Arts Friday, here is my more than half way completed Seriously Simple Shawl by Wendy Johnson.  Details on Ravelry are here.




Lavender Shortbread Recipe:

Thursday, May 17, 2012

You Knit Me Together in My Mother's Womb

For the Inspiration Avenue Weekly Challenge on "hearts," my brother tried his best to help me use the basics of Photoshop, but I failed miserably.  He even made me a 13 minute tutorial on layers and how to create images by combining pictures together.

It looked easy when he did it on his video, but there were so many intricacies that I could come up with only one half-way presentable image by combining two heart art clips on top of one image. Then I couldn't save the danged thing except to a .pdf file.
 (Mother and daughter in NIC unit, Kentucky, 1970)

"...You created my inmost being; you knit me together in my mother's womb. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body."  (Psalms 139, verse 13, 15, 16)

So there are a couple of clip art hearts on my daughter and me.  My entry...it certainly won't win any awards, but it was valuable in at least learning a few basics on the software of Photoshop.

Join in Art with Heart and show us some of your favorite heart-y inspirations like these:

                                                                               cianellistudios.blogspot.com


                                                                              Palmarin Merges : In the Studio

Thursday, February 16, 2012

Elusive Secret of Happiness

Remembering the good times is so important that researchers in the UK have found a clue that
The elusive secret of happiness could be as simple as remembering the good times and forgetting the regrets, a new university study reported
Valentine's Day, 1997 when daughter Julie and SIL Jack married:

Just look at the smiles on all our faces as Julie sets forth on a new journey with her husband Jack! It brings tears to my eyes remembering that joy.

1997, Jack and Julie enjoying their wedding cake on Valentine's Day after their marriage ceremony

Update: Julie has completed her second round of chemotherapy and had a PET scan yesterday in order to better target radiation that begins next week.  She is happy, upbeat, sweet and a joy to have as a daughter.  (Further links to Julie written by her mama can be found here, here, here, and here.)
Further: For people who look at the past through rose-tinted glasses are happier than those who focus on negative past experiences and regrets, according to a new study published in the journal Personality and Individual Differences.
The study helps explain why personality has such a strong influence on a person's happiness and the findings suggest that people with certain personality traits are happier than others because of the way they think about their past, present and future.
The study examined how peoples' ratings on the "Big Five" personality traits relates to their approach to time and life satisfaction.
The "Big Five" model assesses how extroverted, neurotic, open, conscientious and agreeable a person is, and rates individuals as high or low on each personality trait rather than assigning them a personality type.
"We found that highly extraverted people are happier with their lives because they tend to hold a positive, nostalgic view of the past and are less likely to have negative thoughts and regrets.

Wednesday, June 22, 2011

Good News!

Instead of linking to a care page, I'll just let my blogging buddies know what has happened to daughter Julie over the past two days:
  1.  She had her chemo treatment, but a week later she had severe nausea.
  2. When the nausea continued to the point that it was obviously not related to the chemo, she was taken by ambulance to her local hospital (20 miles from her home in S. Carolina) and then AGAIN transferred by another ambulance several hours later to Charlotte, NC to the 700 bed Carolina Medical Center for tests on her AV shunt (the AV shunt drains fluid from the brain to the heart to treat her hydrocephalous).  She has had over 100 AV shunt revisions in her life.
  3.  Julie underwent emergency surgery last night to replace the clogged. She is speaking coherently now, has no headaches and has no memory of anything that happened, including her intense pain from the headaches, for the past 72 hours. That short term memory will likely not be regained, and I say "who cares?" as she won't remember that awful time.
  4. Julie is supposed to sit up in her wheelchair for a few hours today while in hospital and will be discharged tomorrow if all goes well.
  5. Thank you all for your prayers and concern!
The other good news is the package of breast cancer clothing accessories that came in the mail yesterday from Cafe Press.

This is the t-shirt I wore yesterday:
It says: "They're Not Real (the real ones tried to kill me)

Here is a hat for Julie going in the mail today, also from Cafe Press:

Monday, May 9, 2011

Cancer and My Daughter

Malignant, malevolent, invasive: cancer

It has happened again, and to my daughter.  And it is breast cancer.  And how will she choose to deal with it during the normal course of Stages of Grief ?
  • Denial (this isn't happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I'll be a better person if...)
  • Depression (I don't care anymore)
  • Acceptance (I'm ready for whatever comes)

She could be stuck and stay angry and depressed.  But knowing her, she will not.

Allow me to give you a background for Julie.  This is a picture of my daughter and me in her first week of  life, along with a little social history:

(the rest of the story can be read at More Magazine by clicking on this link)

Daughter Julie has been dealing with this latest diagnosis of an advanced breast cancer for about a month.  She has a myriad of medical complications to go along with this recent diagnosis.  But she has taken on this current medical problem with her usual courage and a complete lack of self pity.

So when I dare to complain, I remind myself to look to my exceptional daughter and her life.  How can one not marvel at her successes and her positive outlook?  And how could I think of ranting my despair from petty disillusionments or physical pains? 

God unceasingly reminds me of Julie, my role model for serene acceptance of what life throws at her.  I am blessed because she blesses.

There are things that we don't
want to happen but have to accept,
things we don't want to know but have to learn,
and people we can't live without but have to let go.

~ Author Unknown

Wednesday, February 16, 2011

"Good News and Ah-Choos" by NPR - Health

The podcast showcased here is important to me because it deals with breast cancer and spina bifida, two health conditions with which I am much too well versed.

If either breast cancer and lymph node removal and/or spina bifida has touched your life, please go to this site and do a quick download and listen to the first ten minutes of  THIS PODCAST.


(photo shown at referenced NPR Health site)

You will be happy to know there is some good progress with research and surgeries going on with both conditions.

Wednesday, May 26, 2010

More Magazine: "One Amazing Thing" Story Contest

For "women of style and substance", More Magazine is
the leading voice of today’s sophisticated, affluent and accomplished woman, who is enjoying the richest years of her life, sharing news and advice on beauty, fashion, health, career, travel, money and relationships from her distinct perspective.
It is a health and beauty periodical geared toward women over 40 and has been a Christmas gift for several years from my friend Kathy.  I enjoy leafing through each monthly publication as soon as it hits the mailbox.

More Magazine is having a "One Amazing Thing" story contest open to everyone with a story to tell. Here is what More Magazine says about their contest:
We all have a story.  One of my favorite stories is about the birth and subsequent decisions her father and I made about her health care in the first hours of her life.

My partial submission to the "One Amazing Thing Story Contest" (screen shot only) is this: 

 That picture on the left is of my first born (of whom I write) and me, the 20 yr. old college sophomore who was unexpectedly faced with a critical decision concerning the medical fate of this child.

This is not the entire story.  And there is yet more to write almost forty years later, but that is for another place and time.

If you would like to submit an amazing story of your own, or read and vote for others' submissions, here is the link: READ and VOTE here.

 Who knows, maybe we will get a meet-up at Barnes & Noble's  in the future.

Monday, March 1, 2010

Moments in the Healthcare Setting

There have been many eventful moments I have been privileged to share with patients hospitalized for myriad reasons, and also with individuals involved in the hospice experience.  Sometimes, the clients have shared personal thoughts and fears.  And quite often, when conversing with those in their last months of life, people have shared inspirational moments.

Here are a few incidents of spiritual, or ironic, or pleasant, or perhaps even humorous moments recalled with people who were ill:
  • One patient shared that she knew the secret for a happy life in some of her last verbalized thoughts.
  • A 96 year old woman who was raised on a ranch once asked if I had ridden my horse over to see her. (This occured in 2009 in an urban setting.)
  • An elderly gentleman reportedly asked why Joe Biden was pitching for a televised baseball game he was watching from his recliner.
  • A younger woman was having simultaneous conversations with people in the room that I could not see, but she was sure were present.  It appeared to be a one-sided from where I was sitting, but who was I to question it?
  • My personal dream when I believed I had died, only to awaken to realize that I was still living. That dream had me puzzled for quite a while.
  • A frightened, elderly patient who wanted someone to sit with her, but no conversation would be allowed. ( her wishes were followed.)
  • One young man said that he imagined I was a "pretty hot babe" when I was younger. (love this one...how much younger?)
  • One woman explained how she was not afraid of death, because she had a near-death experience when she was a teenager.  She was fully expecting and embracing her life after death.
  • A friend who told me shortly before she died that she wanted me to do everything I could to make a happy life.  (That conversation could take a lifetime to interpret.)
  • A patient with whom the pup and I were visiting shared her last hours with us as we sat on her bed; she stroked Libby Sweetpea between times of lucidity and murmured for us to please stay for a while.
  • The painting below tries to capture the last days of a friend's life in a hospital bed as he struggled for breath, yet with his assurance that he would come into eternal life.  He was Catholic, and looking forward to release from this earth:
(original oil by N. McCarroll, 2002)

Along this line, a poem written by Dietrich Bonhöffer, a young theologian of great promise and was martyred by the Nazis for his participation in a plot against the life of Adolf Hitler. He wrote Who Am I? in 1946:
Beginning stanza: Who am I? They often tell me I stepped from my cell’s confinement Calmly, cheerfully, firmly, Like a squire from his country-house. ..... Ending stanza: Who am I? They mock me, these lonely questions of mine. Whoever I am, Thou knowest, 0 God, I am Thine!
The entire poem can be found here

A reference about Victor Frankl's book Man's Search for Meaning:
Life is not primarily a quest for pleasure, as Freud believed, or a quest for power, as Alfred Adler taught, but a quest for meaning. The greatest task for any person is to find meaning in his or her life. Frankl saw three possible sources for meaning: in work (doing something significant), in love (caring for another person), and in courage during difficult times. Suffering in and of itself is meaningless; we give our suffering meaning by the way in which respond to it…Forces beyond our control can take away everything we possess except one thing, our freedom to choose how we will respond to the situation. We cannot control what happens to us in life, but we can always control what we will feel and do about what happens to us.
This post on others who have come through difficult situations comes to mind as our daughter Julie is awaiting surgery today at Carolinas Medical Center for an AV shunt revision.  Your prayers for her well being are appreciated.
Julie with Muggsy, 2009

Saturday, February 28, 2009

Inspirational Stories for Publication

A fellow blogger and author recently put out a call for inspirational stories that she will compile and publish in the near future. This individual, Jena Isle, has the website GewGaw Writings. Here is her banner:Ms. Isle states in her blog the term "gewgaw" ...

... in this site means " bauble" - "baubles" of writing....an attempt to write poems, short stories, essays, quotations and what-nots...
She plans to put together twelve inspirational stories which she has garnered for a book she believes will be a good read for a wide audience.

The oral story I submitted last August to the National Public Radio Story Corps was one about a moral and medical decision which was made almost forty years ago that has had far reaching impact. You can read it here at Jena Isle's blog. If you scroll through her blog, all twelve stories she has chosen can also be read.

When she publishes, she will send each of the contributors one of these books. Thank you, Jena, for selecting this story as one of the twelve you believe worthy of publication. Best success on your book, as well.

Friday, October 31, 2008

Attitude of Gratitude; Request for Cards for Julie

Several months ago, in this post, I wrote about my daughter Julie, who was born with spina bifida. On August 25, 2008, she was admitted to the Carolinas Medical Center for a urinary diversion procedure. Medical complications arose and and led to a revision of her AV brain shunt , and an entirely different procedure of a nephrostomy, yet another medical complication. She is still under constant medical care at Hunter Woods Nursing and Rehab. in Charlotte, NC.

She has been hospitalized for eight weeks and is now in a nursing rehabilitation hospital. This is another in a long line of surgeries and hospital stays she has experienced throughout her life. Julie will likely go back into the acute care hospital for another surgery next week. There is not much to break up her long days in bed, and she enjoys mail.

Julie has given her permission that I write in this blog asking for cards or letters from people who might read of this request, and wanted me to be sure and say that she is one of the more fortunate people born with the birth defect of spina bifida.

I am asking you to please drop her a card. It would make her day to get something in the mail addressed to her, even if it were from a stranger. You may not know her personally, but this act of kindness on your part would be received by her with more than heartfelt thanks. I will send you her name and address if you would contact me at nmccarroll at mindspring dot com, or if you leave a comment asking for her address, I will immediately get back with you. For the next week, she may receive mail addressed to

Juliet Heniford, c/o Hunter Woods Nursing & Rehab Center,
Room 605, 620 Tom Hunter Road
Charlotte, NC 28213
.

In talking with her on the phone, I was struck, once again, by her positive attitude. Yes, she has been hospitalized and stuck in the nursing home for going on three months now, but what she said to me was amazingly wonderful:
"But, Mom, it could be so much worse. At least I hallucinated for only a week and was not in Intensive Care very long this time. Another guy had this same type procedure two and a half weeks after I did, and he is still in Intensive Care and intubated. I'm just in bed, but am awake and I can watch television."
Her attitude of gratitude was powerful, and led me to post this message.

From How to Develop an Attitude of Gratitude:
True gratefulness comes from a conscious decision to recognize your blessings, coupled with the emotional feelings that accompany a thankful heart. An ungrateful person can utter the words “thank you” in protest. A thankful person can hold their gratitude as a guarded secret, yearning to be shared.
“Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition, with thanksgiving, continue to make your wants known to God.” Phil. 4:6

While writing of gratitude, this prayer in the form of a benediction written in 1513 by Francesco Giovanni is most appropriate:
There is nothing I can give you which you do not have; But there is much, very much, that while I cannot give it, you can take.

No heaven can come to us unless our hearts find rest in today. Take heaven! No peace lies in the future which is not hidden in this present instant. Take peace!

The gloom of the world is but a shadow. Behind it, yet within reach, is joy. There is a radiance and glory in the darkness, could we but see,and to see, we have only to look. I beseech you to look.
Again, please get in touch with me if you would be willing to mail Julie a card to her home address. Also feel free to use the Hunter Woods address above through November 7, 2008, prior to her next surgery.

Your prayers for God's Hand to be on her are so very much appreciated.

Monday, September 1, 2008

Reflections from the Bedside

Update on daughter Julie: lab reports are good, appliances are working, except for her shunt which diverts CSF (cerebrospinal fluid) for her hydrocephalous.

Chair side observations IMHO:

1) Nurses are overworked and stressed;
2) Hospital food is generally tasty;
3) The general public does not understand the importance of hand washing;
4) Hierarchical symbolism in the hospital has changed over the past few years -- every direct patient care provider slings a stethoscope around their neck and wears scrubs. Therefore, doctors distinguish themselves as "physicians" by wearing a sport coats over their scrubs, and leave steths to the assistants
5) RN's are the only nurses employed here at Carolinas Medical Center; LPN's are a thing of the past;
6) 12 hr. shifts are the norm for RNs; charting is half their workload;
7) Lab results still get misplaced/lost. (Julie's most important CSF labs are still "missing" after five days, and the risk of tapping her shunt for more lab work is risky.)
8) Drama is constant; one does not get too excited over minor crises;
9) Common courtesy is often overlooked by patients; a sense of entitlement often pervades the patient's outlook;
10) Ensure that the patient visitor can take care of themselves in all ways before "visiting" the patient, or the visitor will be a burden to all concerned;
11) An hallucinating patient can almost make one believe an outlandish story, simply because they are so convinced of their own reality;
11) In general, people surely do complain about minor annoyances;
12) Pain control is better managed.

Update on daughter Julie: lab reports are good, appliances are working, except for her shunt which diverts CSF (cerebrospinal fluid) for her hydrocephalous. She is to have more x-rays this hour to determine the amount of CSF fluid around her lungs.

Julie is stapled all the way from her clavicle to her bottom. She is quite coherent and the hallucinations have abated. She is not in pain.

Hurricanes, the Republican National Convention, and life goes on.

Wednesday, August 27, 2008

Urinary Diversion Surgery @ Carolinas Medical Center

Previously, in this NPR Story Corps post, I wrote about our daughter, Juliet, who was born with the birth defect of spina bifida and hydrocephalus. I am writing today about her ongoing surgical experience at the Carolinas Medical Center-University.

Julie underwent a day long surgery Tuesday at the Carolinas Medical Center in Charlotte, North Carolina. Generalized information about this type surgery can be found at Surgery Facts. Another website with more stats can be accessed here at More Information. The procedure was a major ordeal, as the websites explain. I talked with the nurse a few hours ago; she was in stable condition.

Further complicating matters was the additional removal of previously undetected extended, large ovarian masses which pushed the surgery to over ten hours in length. She currently has a nasogastric feeding tube and a pic line for intervenous medication delivery.

Julie is being cared for through the McKay Urology Group, "dedicated to the highest standards of clinical care, research and education with the latest urologic technology". Its programs are nationally recognized for quality and were named as one of the Top 50 Urology Programs in the nation by U.S.News & World Report 2008 edition of America's Best Hospitals.

I am told that Julie's surgeon, Michael Kennelly, M.D., a principal in the McKay Group, is known nationally in this urological practice. She was fortunate to get a referral to this physician and practice.

CarolinasHealthcare:
Dr. Kennelly was one of the first physicians in North Carolina to subspecialize in female urology and neurourology; and, he is currently one of only three doctors in the state who concentrates in these highly specialized fields.

We trust that Julie is receiving state of the art medical care from both her physicians and this teaching hospital affiliated with the University of North Carolina. I will be going to visit Julie in the next few days. This blog will be intermittently posted while I am away from Colorado and staying in a hotel nearby the medical center in Charlotte.

More about the birth defect she was born with can be accessed at The Spina_Bifida_Association or at Spina Bifida Facts.

Here is a picture of Julie and her dog Muggsy taken last January:


Prayers for Julie and Jack, her husband, are appreciated.

Thursday, July 31, 2008

National Public Radio Story Corps coming to Grand Junction

A few weeks ago, I talked about my friend in Denver making a reservation for the National Public Radio Story Corps (NPR).

Since 2003, tens of thousands of everyday people have shared life stories with family and friends in StoryBooths in New York City and Nashville, and in MobileBooths traveling the country year-round. Everybody’s story matters, every life counts...

I made a reservation to tell one of my stories a few days ago since the NPR MobileBooth is coming to my home town for two weeks next month. My slot is reserved for August 12 in Grand Junction, Colorado, the last stop on its national tour.

If you would like to tell one of your life stories, go here to make your reservation for an interview.

And to listen to a few stories from around the country, here is the StoryCorps Link. Everyone has a story to tell, and listening to some of these recordings is fascinating. You can even buy a book of interviews (see last paragraph below for details).

The interviews result in a three to four minute verbal story. To give myself some structure in preparation for telling my story, I wrote this, which I have titled "ONE DECISION." It is factual, and I have taken out close to forty years of emotion in order to capsulize what I want to say in this message. Here is my NPR story:

This is about a decision made after the birth of my physically handicapped daughter in 1970. The doctors attending to her in her first hours of life gave her father and me the decision of either doing no medical intervention with her death imminent within a few painful months, or to immediately begin intensive medical treatment. The physicians left the room with this question to be answered by us, young people in college, working, never having planned on being parents, much less to a child with grave problems.

We were advised there was no guarantee of success in any way relating to her quality of life. My husband’s inclination was to let nature take its course and not intervene medically: we were young and we were not through with our formal education, and since she probably never walk, her life would be very difficult for all of us. (I was a sophomore in college, and we were both taking as many classes and working as many hours as we could to help defray student loans and living expenses.)

But the path we chose, and the decision made, was to start trying to save her life immediately. We decided to let the doctors do what they could for her.

And she lived. And she grew up, although most of her adolescent and adult years were spent hospitalized due to shunt malfunctions and systemic infections.

There are more than a few ironies in this story. One was that Julie’s father and I both DID finish our educations (he got a PhD and I have a Master’s degree). So her life did not hamper that goal. And another irony is that Julie’s father died of cancer over twenty years ago, while Julie is still living today.

Which is not to say that over the years, her life has been extremely happy or in any way carefree. She has had over one hundred surgeries relating to complications brought on by her birth defect. She has been depressed to the point of trying to end her own life; she had virtually no childhood friends her own age.

In a few weeks, Juliet is facing another very serious operation. She has been in bed the better part of three years with skin ulcerations and infections. But in spite of the heartache, there have been positive, bittersweet successes…

1: She has worked for as a receptionist and lived alone, using public transportation to get her to and from work while in a wheelchair;
2: Julie completed high school and then college with a four year degree -- this in spite of many long months of hospitalization;
3 : Julie has resided independently both as a single and married woman;
4: Julie has maintained an eleven year long, loving marriage to a man having the same handicap of spina bifida;
5: She moved across country from her native state, and then she and her husband built their handicap accessible home five years ago on land which he husband purchased many years ago as an investment;
6: She (and her husband) are members of a strong faith-based Christian community. I’m told they are of spiritual importance in that church group;
7: Julie aspired to be a journalist, worked at a local newspaper as a college intern and had several sequential articles published. She currently writes to the editor of her local newspaper in South Carolina, expresses her opinions (especially about the problems that handicapped people encounter), and has had her letters published in the Charlotte Observer;
8: She and her husband are the loving owners of an eight year old frisky Yorkshire terrier;
9: Julie is a loving, generous, stubborn, sweet person with an amazing coping mechanism of denial.

She has become the person she is, in part, because of caring adults coming into her life by way of a loving family, excellent medical care, good surrogate fathers, a decent education, mental health assistance, the religious community, paid caregivers, and adult friends. And her own will to live and thrive are, of course, part of her essence.

And so all this has happened, at great financial and emotional expense. Her determinism and desire to keep living came out of ONE DECISION years ago to proceed with medical intervention. Julie's life has played out in far reaching ways that I cannot fathom. But it MUST have been the right decision to try and stave off hydrocephalous and infection in those first hours after her birth, because all of the lives she has touched have been significantly, and I believe positively, changed by knowing Juliet.
In a nutshell, this story is about perseverance and love, and how each person's life is important and part of the structure behind the doors where we live. Maybe more than a few will find it a valuable listen.

A compilation of NPR Story Corps stories can be purchased here.

Monday, April 21, 2008

March for Babies and Spina Bifida

Upcoming Walk Event:
Saturday, April 26, 2008 8:30 AM Opening Ceremonies; 9 AM March Begins

Location: Lincoln Park
12th & Gunnison / 6-mile route
Grand Junction, CO
Phone: (970) 243-0894
Debbie Horwitz, Director

March for Babies! is the new name and reflects what the event and the March of Dimes are all about: babies. Take off your walking shoes, put on your marching shoes and sign up. You'll be supporting lifesaving research, services, education and advocacy that help all Colorado babies get a healthy start.
This organization has a mission to improve the health of babies by preventing birth defects, premature birth and infant mortality.

The "March for Babies" has always held a special place in my heart. Every year, when the event rolls around, I check out the poster child to determine if the selected kiddo was one born with spina bifida. Two times out of three, yes, spina bifida is the birth defect of the cute kid with crutches. Believe me, I can tell.

My daughter was born with this condition, and with the more severe type termed myelomeningocele. She also has hydrocephalus, with its own set of serious complications. Sometime I will write about her remarkable life.

Disaboom gives a thumbnail definition of this birth defect:

..."spina bifida” ...(with neurological deficits in movement, sensation, bowel, and bladder). During development, the bony arch fails to form and the meninges (spinal cord covering), spinal cord, and related nerves herniate through the opening which leads to neurological injury. These tissues may be partially or completely covered by skin. There may even be an open defect with leakage of spinal fluid and the spinal structures exposed to air.
As young parents, we educated ourselves about what the future might hold for our daughter. I joined parent support groups, learned how to give my child physical therapy help, researched physicians and health care systems and practically lived side by side with her for many years at various hospitals across the US.

Support groups are important not only for the provision of information, but also to keep isolation in check. Current groups involve internet connectivity, such as the spinabifidaconnection,
...a community where the ups, downs, positives and negatives of living with spina bifida are discussed. It is a person to person support website for spina bifida. This site offers resources, personal experiences, and support so that our visitors can discover options and make decisions for themselves.
After her birth, and for many years thereafter, the isolation and, at times, almost despair, was not mine alone. I learned other mothers had walked that scary path of having a child with special needs long before I ever took that first step.

If you have never read the poignant “Welcome To Holland “ piece by Emily Kingsley, read it here: Someone Different. That writing precisely mirrored my thoughts as a young mother.

The more recent piece of writing that I would like to put directly in this blog is by Maureen Higgins. It is entitled “To You, My Sisters”:

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 NICU units, 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 physiatry. 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 "Welcome 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.

And we do reach for the stars. This text is for all you moms who dedicate your life as caregivers, by accident or choice. The March for Babies brings it all home to me again this week. Research into prevention of early births and causes of infant mortality is key, and March for Babies is helping.

Bless all of you out there walking for our kids. And God bless and strengthen our children.