Friday, October 10, 2014

Special Needs Spotlight || Rachel


 


Hey guys, Migs here.  You know I used to write a little something before the spotlight and I think I'm going to give it a try again. So today's spotlight comes from Judy who is a mother of 3 grown children, one of whom--Rachel--was born with spina bifida. I'm so glad Judy was willing to share her story with us today as I always think it's valuable to hear from parents who have already been through the child-rearing phase of this journey. I appreciate Judy's candor--it was not and is not easy being the primary caretaker for a child, now adult, who is both physically restricted and medically fragile. Even the fact that Rachel was born in 1980--younger than me--makes you realize just what a different world Judy was raising her family in. Judy gives some great insight about how she and her husband have stayed connected over the years. Also, one thing I couldn't help think about over and over again reading Judy's words were how should legislation, regulations and insurance companies (I don't even know which would apply so I'm just using them all) be changed to be more beneficial for families who need additional help? I'd love to know more about these things. Anyway, please enjoy today's spotlight...it's a good one.



Hi, I am Judy and have  been married to my husband, Bob, for 41 years.  We have three children: Rachel, 34; Zachary, 30; and Molly, 26.  Rachel was born with spina bifida and hydrocephalus, although the hydrocephalus was not immediately apparent or suspected.  Prenatal exams and studies had not predicted that we would be facing anything troubling when our first child was to be born.  So, when Rachel was delivered, we learned only on the spot that she had an abnormality on her back - one that we suddenly learned meant she had myelomenigocele, more commonly known as spina bifida.


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Miggy:  Judy, thank you so much for participating in today's spotlight. You have a grown daughter, Rachel, who was born with Spina Bifida and who you raised her long before the days of Google and the internet. I always love hearing from parents who are further along in this special needs journey as I know there is so much that those of us still in the thick of child rearing can learn. So first, can you take me back to the day you learned Rachel had spina bifida? Do you remember how you felt, as well as the reaction from those around you? How has your view of this diagnosis changed over the years? (Or has it?)        

Judy:  At the moment of Rachel's delivery, what should have been an experience of sheer joy and relief, suddenly turned into an overwhelming crisis.  We were shocked, confused, totally unprepared and uneducated about what we were all to face, and we were suddenly barraged with misinformation mixed in with reliable information, but we wouldn't yet know the difference between the two.  I just remember being immediately, incredibly sad, and I remember that Bob was more or less trying to logically assimilate all the information and preparing to break the news to unsuspecting parents and grandparents waiting just outside.

When Rachel was born, 1980 was still the era of "Baby Doe," where some children with myelomeningocele were more or less given what would today be considered hospice care, at birth, without surgery or other treatments.  That's the way things were then.  The only informational resources available were the opinions of doctors, my husband's medical textbooks, or the parents of similar children.  Most of the medical information in print was typically at least ten years out of date, considering the early neurosurgical advances that were actually being made.  Fortunately, Rachel was born at a major metropolitan hospital, one where she was hospitalized for the first month of her life, so medical ignorance wasn't as rampant there as it might have been elsewhere.   On the other hand, no one at that hospital had advised us that there was a children's hospital nearby that was in fact one of the leading specialized centers for myelomeningocele. The hospital of Rachel's birth, now long defunct, had prided themselves on being a top notch medical center, so they did not refer us to the children's hospital.  We would have known that, had there been the Internet with a search engine back in 1980.  But, within a couple of months, Rachel began care at the more appropriate, specialized hospital.


Miggy: Rachel lives with you and as you explained is still very medically fragile. Can you explain how Rachel’s needs affect your day-to-day life? How has this changed over the
years? For example do you have other children and if so what was it like taking care of your daughter's needs while also taking care of other children? You also mentioned getting this diagnosis while your husband was in medical school...wow! I can imagine this brought a lot of additional stress to an already stressful time of your life.    
 
Judy:  Over the first few months of her life, Rachel had a few surgeries, and we gradually became the ones who knew her best.  Due to severe dysphagia, she was NG tube fed for the first nine months of her life, and I changed those tubes every three days, myself.  She did go on to eat somewhat normally, but only while being restricted to baby foods for the first three years of her life, while undergoing intensive physical therapy, occupational therapy, feeding therapy, speech therapy, etc. that she and I would travel to in order to receive.

Our next child, Zach, was born when Rachel was four.  It was a delight to have a "normal" healthy baby to deliver, nurse and raise, but in retrospect, Zach felt somewhat limited in his childhood by our availability, especially during prolonged hospitalizations, and because of his father's call schedule, and even because of my frequent appointments for Rachel.  Nonetheless, Zach and Rachel developed their own relationship, and we went on to have Molly, when Zach was four and Rachel age eight.  


Molly was born with ears that did not fully develop: bilateral microtia with atresia, and as a result, her prognosis for normal hearing and regular facial appearance was at first uncertain.  Very summarily, Molly had many reconstructive surgeries and ended up to be just fine.  We are looking forward to her wedding in May, 2015.
Rachel was actually more physically robust and independent when she was younger.  She rode in a little "Star Car" until age five, when she got her first manual wheelchair.  She has had several wheelchairs over the years, and even a couple of power chairs, neither of which was practical for her.  We have also had a succession of handicap accessible vans to accommodate our family travel needs.
In 1996, Rachel had very serious spinal surgery that left her with both a tracheostomy and a G-tube.  She slept with the use of a CPAP machine at night, and later it was a BiPAP machine, and finally a ventilator.  With time, the ventilator was needed around the clock.  Despite this, we have traveled as a family, even going on two cruises prior to her complete dependence on her ventilator, as recently as 2006.  

We never needed nurses to assist Rachel until after her 1996 spinal fusion, and then everything changed.  Following a three month hospitalization, we had in home nurses around the clock, but later less hours were covered by insurance, and eventually, we exceeded our insurance lifetime maximum benefit, leading us to find, fund and train our own nighttime nursing care, or doing it by ourselves, and sometimes with nurses helping out by day.  We've had over the years nurses who have been like family, and we have had nurses that were outright scary, but we developed a system, and we are fortunate to be getting by.

For the past several years, Rachel has been able to eat a fairly normal diet, but each meal takes up to two hours, and constant vigilance and suctioning is required for her to eat.  This is the most strenuous part of our day.  Until Rachel became permanently dependent on her ventilator, we used to travel as a family, and Bob and I would travel for long weekends once per year - now not so possible.   

Leaving the house with Rachel requires a lot of planning and equipment.  Between the ventilator and suction machine, both hooked to the back of the wheelchair, it can be quite exhausting.  This is something I worry a lot about, having the ability and strength to continue to care for Rachel’s needs as I get older.


Miggy: Judy I'm interested in hearing what childhood was like for your daughter--and
perhaps she can help answer this question as well.  Did she have friends, did she enjoy school? Was Rachel ever bullied or teased for being different? How did you handle this as a family and how did your daughter handle this individually? Any words of wisdom you'd like to impart on us younger parents when it comes to these things?

Judy:  Rachel only recalls two instances of being bullied in grade school and each time a teacher came to her defense.  Looking back on it, Rachel feels her childhood wasn't that dissimilar from anyone else's, with the exception of her surgeries, hospitalizations and therapies.  The kids she grew up with were generous in tolerating her physical limitations, and the friends of her brother and sister just accepted her for who she was, without any significant barriers.  The area we live in is one where people tend to be more inclusive, and it is fortunate that no one bothered her in that way.  I remember in first grade every Monday a new student was assigned to sit next to Rachel and be her helper.  One mom told me that the kids loved this opportunity and looked forward to being her helper.  Another mom, who was a nurse, insisted that Rachel join the Girl scouts and that she was well equipped to care for Rachel at the meetings.  It’s funny how these two kind acts are still so memorable to me.


Miggy: One of the things that has always been important to me is making sure that Lamp’s disability doesn’t define her life or our family.  Having a daughter who needs a lot of assistance I can imagine that finding a balance over the years would be difficult. Did you and your family make conscious decisions to help create some balance in your
lives? (Having help in the home, weekly date nights, etc?)

Judy:  We still make it a point of having date night every other week, it is so important and not one that should be neglected.  You can’t take care of others unless you first take care of yourself and your marriage.  Life is not easy for us, and sometimes it is hard to avoid judging those who complain about having much less to do.  I don't always feel part of the company I am with, and often feel like I am in my own unique category in life.  Despite all the pressure, the time constraints and financial hardships, we have always been able to have a good dog, a nice cat, and the freedom to pursue various hobbies.  Rachel, herself, does art.  I have done mosaics and knitting, and I love to read and workout.  Bob has sailed and ridden motorcycles most of his life, and he still does.  In his fifties, he became a flutist.  Rachel enjoys going to plays with me, listening to music and having Bob play Broadway music for her.  Humor has always been part of our personalities, whatever the situation, and it has remained that way.   



Miggy: Will you share one lesson or trait that you've learned from being a special needs
mom?
Judy:  It is easy to worry about what the future holds for your family.  Someone once advised me when Rachel was a baby to try to take one day at a time and to focus my efforts on the present.  I still find myself going back to that advice when I worry about our future.  You really can't afford to be afraid.  Work on establishing a vision for your special family situation and try to make it happen.
Thank you for this opportunity to share my family with you.  I have to confess that it was a bit painful reliving some of the more difficult challenges in being Rachel's mom, but at the same time I marvel at how positive she is in light of her medical needs.

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Judy, wow... thank you so much for sharing your story and your daughter Rachel with us today. You're a great mom. You probably know that, but I just wanted to reiterate it. Hugs to you and your wonderful family. I'm so glad you all have each other.

If you or someone you know would like to participate in the special needs spotlight series please email me--or have your friend or family member email me directly--at thislittlemiggy at gmail dot com.

Have a wonderful Fall weekend.


2 comments:

  1. Liz the PT6:18 PM

    That note about exceeding the lifetime insurance max is important--some babies reach that before they ever leave the hospital! I've never known what happens then, but I guess now I do--the person gets nothing beyond Medicaid, should they qualify. Some states have the Katie Beckett waiver that allows kids like Rachel to access Medicaid when their families are over income but still have significant medical expenses, and the Katie Beckett waiver is one of the best things to happen in insurance for kids with special needs, in my opinion. No matter how much money you have, it is super expensive to care for a child with special needs. Oregon has a terrible, weak, very restrictive version; Wisconsin has an amazing one that is basically supplemental insurance. So many changes need to be made to our heathcare payer system....
    Thanks so much for sharing, Rachel and Judy!

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  2. Judy, thank you so much for sharing this spotlight! I am also a mom of a daughter with SB, though we are 30 years behind you. There have been many, many changes in the medical care and technology available now for kids with SB, and I know that a lot of that has been paved by moms like you. We still have a ways to go, but please know that everything you have gone through has made it better for those of us coming behind you. Rachel is a beautiful girl and clearly is so much more than spina bifida. You are an inspiration to other moms who still have a long way to go in this journey.

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