One of the “perks” of having a child(ren) with disabilities is that you get to meet some amazing families.   It is a club of sorts that you belong to you.  One that you wish upon no one, but treasure once you are in it.  Don’t get me wrong, I would do anything to take the pain away from my children and all the medical challenges they face, but what I have learned is to embrace the joys that come along this journey.  I often tell my kiddos, “we can’t necessarily control how we are made or what medical issues we must face, but we can control how we react to it.”  Our reactions aren’t always joyful.  They are sometimes raw, painful, and real – but we face them head on as a family.  And when there are times of considerable joy and humor, we embrace that too with open arms.

 

One family I have the honor of knowing, faces life very much the same.  I recently had the opportunity to ask Mendy Fann about herself and her children and the struggles they face on a daily basis.  I hope others will find the same encouragement from her story as I did.  It’s nice to know we are not alone in our journey of raising “extra-ordinary” kids.

 

Mendy and her husband John have 5 kids, Shelbie (18), Lyla (16), Brandon (soon to be 15), Whitney (9) and Chloe (7).   They affectionately refer to themselves as the Fann Clan.  Mendy has her hands full in more ways than that.  You see, her son, Brandon, has an incomplete spinal cord injury and utilizes a wheelchair for mobility.   Brandon was diagnosed with transverse myelitis at 6.5 months of age.  Transverse myelitis (TM) is a “neurological disorder caused by inflammation… in the spinal cord” (NIH, 2016).  Brandon had swelling in his spine, C2-T4, and a 103 degree fever rendering him listless and retracting when breathing. This occurred within 3 days of a small fender bender (he was securely in his car seat at the time of the accident) and 1 week after his dTap immunizations.  There was speculation that the car accident could have caused the spinal injury, but also due to the fever, doctors wondered if the injury was viral, stemming from the immunization.  Every hospital and doctor’s office they have visited have differing views on the cause behind his paralysis.

 

Regardless, of the etiology, Brandon faces life with the challenges of being paralyzed from the waist down.  He has to be on strict regimen to manage bowel and bladder function.  He must self catheterize 4 x day, take medications to manage bladder spasms, and wear depends due to incontinence.  He utilizes a wheelchair for mobility, and until recently, he would use a walker or forearm crutches for shorter distances.  However, as a teenager, Brandon wants to keep up with his friends and get out of the house to have fun.  He recently made the conscience decision to use the wheelchair fulltime.  His mom also thinks he got tired of falling down in front of his friends.  This was a tough decision for Mendy but she “let him decide and no longer pushed him to do what I thought was going to be the most beneficial.”  It was interesting to hear Mendy say that.  Don’t we all face that as parents, a time when we have to let our kids make decisions for themselves and let them figure out their place in the world. But when your child’s decision is to stop ambulating with his legs (and walker), while it slows them down, it also works his muscles and allows him to be upright for some parts of the day.  She knew in her heart, Brandon knew his body best and knew what he wanted in life.  These are decisions far greater than some of us could imagine we could give to a 15-year-old teenage boy.  But as many of us also know, kids who face such extraordinary circumstances, grow up and mature faster than they should have to.  As a mom, Mendy must wonder: is he going to want to continue to try therapy to one day walk again?  Or are we letting him move forward in his life on his terms?  Regardless of any concerns I know Mendy must have, she chooses to raise her son with the dignity and respect he deserves.

 

Brandon is not the Fann’s only child facing chronic medical issues.  Their youngest child, Chloe was diagnosed with Rett Syndrome a couple weeks before she turned 2 years-old.  Mendy, like many parents instinctively knew something was wrong and became her child’s biggest advocate well before she was even diagnosed.

 

As Mendy said, “she was born without any issues, developed normally and met most of her milestones on time until she reached about 15 months.  She started to slow down a bit, but I thought it was due to our move from FL to Ohio and the fact that she was the baby of 5 and didn’t have to talk or try to get things for herself if she didn’t want to (Shelbie is 11 years older and Lyla is 9 years older).  She finally walked without assistance at about 20 months, but when she started walking her speech regressed. Then she started self-stemming (rolling her eyelashes) and hand washing/wringing…that followed by an odd gait within a couple of weeks.  After that, she started falling down a lot and her “temper tantrums” increased and became more like fits of rage and fear. All of this happened within a couple of months. She stopped playing with her toys and would drop her sippy cup and snacks.  I noticed she would clasp her hands behind her back while walking and rock back and forth instead of actually coming to a complete stop while standing.  I did a little online research and Rett Syndrome continued to pop up on my screen.”

 

According to the National Institute of Health, Rett Syndrome is “is a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability” (NIH, 2016).

 

Mendy’s suspicions were soon verified by a base doctor.  (The Fann Clan are a military family so they are navigating Tricare insurance and Base Medical Facilities when it relates to their child’s needs).  Two weeks after lab work and tests were run, Chloe was officially diagnosed with Rett Syndrom.  The entire family took it hard, especially Brandon.  He knew the struggles ahead of Chloe as he had spent years in doctor’s office and therapy appointments.  Nobody in the family wanted to go through these struggles again.   While at the time, they didn’t know everything Chloe would be facing, the family knew she would not live a “normal” life.  Chloe’s level of functioning went downhill quickly after her diagnosis.  John, Mendy’s husband and Chloe’s dad, got deployed to Afghanistan just three months after her diagnosis and Mendy had to face the challenges of setting up therapies and appointments (along with raising the rest of the family) on her own.  Mendy had to yet again, grieve for the life she desired for her child, but knew she would never be given. 

 

While, John was deployed, Chloe lost her speech, her ability to use her hands with purpose, her ability to chew and drink from a sippy cup and more.  She also lost weight and was classified as failure to thrive.  Her behavior also changed and Chloe would experience “meltdowns” due to sensory overload.  The family did their best to stay involved in society, but even going to church became a struggle as Mendy was often called to come soothe Chloe.

 

Between Brandon and Chloe, Mendy spent most of her days taking kids to physical therapy, occupational therapy, speech, ABA, doctors’ appointments and more.  She had to find a new “normal” in a not-even-close-to-normal life.  Some things had to be sacrificed.  Mendy just didn’t have the time to keep her other kids in their extra-curricular activities.  They entire family was impacted with the addition of Chloe’s diagnosis and increasing needs.

 

Eventually Chloe required a feeding tube to increase her calories and help her to gain weight, but that like everything else continues to be a daily struggle.   Chloe remains in pullups as she struggles with daily life functions.  And just recently, Mendy admitted they have had to have their youngest child fitted for a wheelchair as she is losing the strength to ambulate.  With each new diagnosis, the entire family adjusts to the changes coming their way.  Mendy knows full well that with regression in her daughter’s abilities, more fears are affirmed.  

 

Currently, Chloe, goes to school 5 days a week, in the local public school.  She has full time nursing care at school and also receives therapies there. 

 

Rett Syndrome has no cure at this point in time.  October is Rett Syndrome awareness month…an awareness that is so needed.  We need more research dollars allotted to finding a cure for this debilitating disease so girls like Chloe can one day live a normal life. 

 

Being the mom to 5 children, 2 of which face chronic medical issues is no easy task for Mendy, or the rest of the family.  One of her biggest struggles she faces in raising her extra-ordinary kids is dealing with the insurance company.  As a military family, the Fann’s utilize Tricare insurance – which presents its own unique set of challenges.  As Mendy said, “Tricare really puts the families through it.” She goes on to explain that Tricare typically covers most expenses but the families need to work to get those things covered.  Having to raise children with special medical concerns is challenging in and of itself, but having to be the primary advocate to getting the insurance to cover the required costs those children is just that much more of a hardship for the family.

 

I asked Mendy a few more questions in regards to her children and their unique needs, here are her own words when it relates to these issues.

 

What are the biggest struggles with raising your children as it relates to their specific medical needs:

 

“For Brandon:  my heart breaks to see him want SO badly to do what the other kids do…hiking, swinging from the rope while kayaking, exploring the river bank, hitting the waves, etc.  He never complains, but I see it in his eyes.  He uses his charm and quick wit, humor, to take the attention off of his inability to do certain things.  He makes jokes about himself to fit in. 

 

For Chloe: I hate to know she has so much to say, but can’t.  I don’t know what is hurting her when she cries.  She has different cries for different things.  She fell last night in the bathroom and her cry was one of disappointment in herself.  I just sat down beside her in the floor and let held her while she cried.  It’s like she knows part of her body is starting to fail her again.”
 

What are some of the joys of raising your crew?

 

“I’m amazed at Brandon’s determination and strength.  I love his laugh and his beautiful soul.  He really man’s up and takes care of things while John is gone.  He’s a brain, too!  He fixes all of my electronic issues….he helps Whitney with her school work when there’s not enough of me to go around.  He reminds Lyla (she has her own issues with dyslexia, dyscalculia, dysgraphia, and ADD) of different things she should do or be doing. He rarely complains and loves to pitch in and help out whenever I ask him to do something.

 

I love Chloe’s eyes…they speak volumes.  I love that she will still finally let me hold her…there for about 3 years after her diagnosis, she didn’t really want to be held or touched.  She has the most precious giggle, too.  I love that little things will get her laughing.”

 

What keeps you going?  How do you cope on those tougher days?

 

“My faith in God is what keeps me going.  I know He is taking care of us, the kids…all of them.  I know that one day it will all be over; the pain and suffering.  I just have to ask Him to remind me of that; daily.  I have to ask Him to remind me of all the good in our lives; not the bad.  I have to ask Him to show me Chloe’s life through His eyes because I have a hard time understanding why she must go through SO much hurt and pain.  Sometimes, it’s ‘Ben and Jerry’s’ that gets me through….”

 

Have you had any exceptionally good or bad experiences with doctors/nurses/therapists etc that still resonates with you today?  Why do you think you still remember those experiences? 

 

“Brandon had a phenomenal PT in Ft. WaltonBeach, FL…she could get him to work and try anything when no one else could.  She just had a way about her that clicked with him.  I remember it/her so well because Brandon seemed so happy and didn’t complain about going to therapy “again” he actually looked forward to it.”

 

How are your kids doing today?

 

“Brandon is doing well…has to stay on top of his renal issues but other than that he’s doing great.  Chloe; not so much.  Her weight gain is good, but the vomiting has become an issue.  She is also getting weaker which is troublesome.  She will be getting a wheelchair soon.”

 

What are your hopes for your children and their future?

 

“I would like Brandon to finish high school and get into a good college where he can pursue his dreams of being self-sufficient in all ways of life (software engineer is the direction he is heading).  I would like for Chloe to be able to use the eye gaze system so she can communicate her needs, wants, wishes.  I would like for a cure to be found for her before it’s too late.  Her lifespan is anywhere from Now to mid-40s…it all depends on how weak or strong her immune system is and if she develops long qt syndrome (heart probs), sleep apnea (lose them in their sleep) pulmonary issues (pneumonia gets a lot of our girls) and the list goes on.”

 

If you could talk to medical, nursing, PT, OT students – what advice would you offer them in working with kids with disabilities and their families?

 

“Listen to the moms…we have a 6th sense about us concerning our kids and how they may be feeling on a certain day, or issues that have been going on…behavior or mood wise.  Involve the kids as best you can when setting goals and making therapy plans/routines.  Show compassion.”

 

What is something you would share with other parents with children who are newly diagnosed?

 

“It’s okay to cry, to not be perfect, to not make every single party, dinner, or other social engagement, to send store-bought cookies to the school function, to stand up and have little attitude when you’re getting something done for your child…be the advocate, to accept help from family, friends, neighbors…to take a nap in the middle of the day, stay off of web md for every little symptom, to hold and love ALL of your kids, to not shut out your spouse…we all grieve differently, and yes…grieve over the diagnosis as you feel appropriate, don’t bottle it up, don’t sugar coat the dx but see it for what it is and tackle it with everything you’ve got.  Find YOUR happy and try to get as much of it as you can, even if it’s only when you shut your eyes and visualize it.”

 

Anything else you want to share?

 

“…  Seeing other children progress as they should is always tough because you are seeing what your child “should” be or you hoped they would be.  Hearing others complain about how their kid won’t “shut up” when all I wish for is a simple “mama” from Chloe…I have never heard her say “I love you”.  The fear of planning a funeral for my little girl.  Knowing I will outlive her…wondering what that will do to our already fragile marriage….wondering how that will affect the kids.  Wondering how Whitney who has a brother older than her with a disability, and then a younger sister who can no longer play with her….”

 

Hearing Mendy say those words…so powerful. So Raw. So Real.  I am grateful to her for being so honest with us on her family’s perspective of life with pediatric disabilities.  She has painted us another picture of what life is like for families like ours.  It is my hope that Mendy’s story will shine a light on the family’s perspective.  May future professionals learn a little more insight into the plight of the child and family as they enter the field of pediatric disabilities and may other families facing similar life struggles, realize they are not alone in their journey.

 

Thank you Fann Clan!  You are always in our prayers.  Keep fighting the fight!

 

 

References:

 

International Rett Syndrome Foundation - https://www.rettsyndrome.org/

 

National Institute of Health (2016). Transverse Myelitis Fact Sheet. The National Institute of Neurological Disorders and Stroke. www.ninds.nih.gov  October 20, 2016.

 

National Institute of Health (2016).  Rett Syndrome Fact Sheet. http://www.ninds.nih.gov/disorders/rett/detail_rett.htm October 27, 2016.

 

 

 

 

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