Monday, February 9, 2015

A Mother's Perspective into Neurofibromatosis

Hello everyone! This week I decided to have another guest blogger, so please take the time to read this post, as my lovely mother worked very hard to write it for us! Not only do we have my own mother as a "guest star" but I'm also happy to announce that Mrs. Bibbs (Reggie Bibbs' mother) will be making an appearance in this blog! So sit back, relax and enjoy!

A Mother's Perspective 

My lovely daughter Courtney has asked me to write a blog post addressing neurofibromatosis from a mother’s perspective, and I am honored to have been asked!  I was inspired to do this as well, when I read the post on the MBNF site a while ago, which featured an article by Amy Thompson talking about her son’s NF.  It was great to read another mother’s view on how challenging this disorder is to deal with, and I appreciated her honesty in her article.  However, the ultimate inspiration for me to share my perspective came as a result of speaking with Dorothy Bibbs recently.  She is Reggie Bibbs’ mother, and you all know who Reggie Bibbs is!!!  I thought this would be a great platform to share her perspective, as well as mine, and she gave me her blessing to share.

Our family had the incredible opportunity to talk to Mrs. Bibbs over the phone a month or so ago, and she shared with us her journey as a mother with not only one child with complicated neurofibromatosis Type 1, but with three other children affected by the disorder, ultimately losing one of those children to a cancerous NF tumor, as well as having NF herself (which was diagnosed when Reggie was only eight months old).  She shared with us in conversation just how challenging her life has been, raising a big family with six children, and having to deal with all of the medical issues that came with NF for those who were affected.  She recalled being completely devastated when she was diagnosed with the disorder herself, just when symptoms were starting to show up in Reggie, who was the youngest of all the children.  She told us of the many surgeries he went through, and how difficult it was to watch him suffer through those surgeries.  Living in Houston, Texas, they had access to some of the best doctors, but she found that many of them had never heard of NF, and didn’t really know how to deal with its symptoms, claiming that NF was “very rare”.  Those were tough times for the Bibbs family, but they persevered, despite being given some very negative odds for Reggie’s progressive NF. 

At the end of our conversation, Mrs. Bibbs told us that “God chose Reggie for this mission….to teach others about NF.  God gave him the strength to pursue the challenging times, and he is a much stronger person for that.”  In her words, she said that Reggie is “a blessing and a hero” to all.  I couldn’t agree more!!!

After hearing her story for myself, and hearing how positive and encouraging she was, I couldn’t help but feel that it would be important to share her experience and feelings, in the hopes that it might reach out to others currently dealing with the same types of issues, and perhaps give some encouragement to those same people.  

Now for our story. 

After my somewhat complicated pregnancy with Courtney, she arrived five weeks early, relatively healthy and absolutely beautiful!  We watched her grow over those initial first few months and years into a happy and loving little girl.  Along the way, we noticed that she had some interesting birthmarks (which were confirmed to us as such….”stork bites” in fact is what her doctor called them).  Of course we didn’t think twice about them, even when they started showing up in bigger numbers.

We took Courtney in to the pediatrician when she was three years old, with a strange rash (that turned out to be shingles….I know…..poor kid ~ but that was thanks to me having chicken pox when I was 5 months pregnant with her).   The pediatrician said little about the shingles, but was very interested to have answers to some very odd questions, like “does she throw up much?”, “does she know her colors?”,  “is she clumsy when she walks or runs?”, “does she see things ok?”, “is she speaking properly?”.  Puzzled by all these strange questions, my husband and I asked her why she was inquiring about these obviously important milestones.  “I think your daughter has NF 1….neurofibromatosis type 1”.  HUH ???  What in the world is that???  How do you spell it?  Type 1??  How many types are there??  We were speechless, terrified, completely shell-shocked that there was something possibly wrong with our perfect little girl!!  She had shown us no signs at all of being anything but perfect!  We had just celebrated the birth of our beautiful bouncing baby boy a few weeks prior.  Did he have this too??

Of course the first thing we thought to do was to get on the internet and research all we could find about NF.  It ALL seemed to be bad news!  Everything from severe disabilities and disfigurement, internal cancers, tumors growing inside and/or outside the body, learning challenges, blindness, deafness and sometimes death!!!!  How could this be???  Where could we go for help??  We had so many questions and it seemed like this “rare” disorder was virtually unknown.  Her family doctor didn’t know anything about it, and the pediatrician who diagnosed her didn’t really have much to say about it, other than “we need to get you referred to a genetic specialist”.  Certainly there wasn’t any kind of specialist like that in our city, which would mean having to consult with a physician in a larger center.  That started the whole adventure back in 1997.

The most frightening part of that (now 18 year) adventure was that we could not find any medical professional who knew much about NF.  Occasionally, a specialist would say that they knew a little bit about some part of the disorder, but we were shuffled around from one type of specialist to another, to try to deal with the multitude of issues that Courtney was facing at any given time.  How many doctors have we seen over the years, you ask?  32.  This includes a trip to the Mayo Clinic in Rochester, Minnesota in 2011, which was probably the most successful trip we had.  We didn’t get any new answers or solutions to Courtney’s medical issues, but the specialists we saw there confirmed her multi-diagnoses and further confirmed in our minds that we were getting the best care possible at home.

The hardest part about all of this, from MY perspective?  I’m a mom.  I am programmed to fix things.  I am supposed to make things better.  I am supposed to be able to make sickness go away.  And if I can’t do those things, I should certainly be able to find someone who can….even if I have to move mountains to do it.  I couldn’t.  My hands were tied.  I was stuck for a solution.  These were the cards we were dealt, and we just had to live with the situation.  I could not fix this.  I still can’t.

It has taken me a lot of years to accept the fact that I cannot change or make better Courtney’s disorder.  Sometimes I’m still not sure that I have found peace with it.   I was deeply inspired by Mrs. Bibbs, though, when she said that “God chose Reggie…”    It made me think that while sometimes we don’t have a choice in this life, we do the best we can with what we are given, and we try to make the world a better place by sharing our experiences and our hearts.  Some people are just meant to do this, and I believe that Courtney’s desire to teach others about NF and raise as much awareness for the disorder as possible is something that will make other people’s experience with NF perhaps easier.  There is so much more knowledge out today about NF, and that is thanks to people like Reggie Bibbs and his Just Ask Foundation, and to Courtney for all they have done to raise awareness.

Amy Thompson said it just perfectly in her article.  “I don’t know what [the] future holds, and that’s the scary part”.  All of us parents who have children with NF can completely relate to that.  Things change all the time, and we have to ebb and flow along with those changes, as frightening as they may be.  All we can do is be watchful and deal with issues as they crop up.  We learn that we can sometimes find strength in others’ experiences, and know that we can get through the challenging times and enjoy the happy times.

This is what I have learned in my experience of having a daughter affected by neurofibromatosis:

 ~ You never know how strong you can be, until being strong is the only choice you have ~

Much thanks goes to Dorothy Bibbs for her contribution to this article.  She is truly a woman of strength, wisdom and love!


1 comment:

  1. Well said. Mom's do put a lot of pressure on themselves. You do make a powerful suggestion which is support from one another. I enjoyed your post.