Fiona Midori King

Fiona Midori King

Hope 4 Fiona

We Will Meet Again

 

 

Paxton wrote: 

"Our words are failing us this day. This sweet light in our lives... We can only simply say... Our angel Fiona is in heaven. She went peacefully surrounded by love early this morning (Dec. 23). She left her body and immediately was in the presence of Jesus. No more GM-1. We miss her. We love her and we are more grateful than ever to know all the beauty she brought into our lives... Hug your beloved ones. Lie next to them and kiss their cheeks and hands. Ask them about their important things and lock it all up in your heart. There will come a day when it will not be as easy to come by and you will need those tender, caged moments to carry you through. Love fiercely, without end. We loved her more than she could ever imagined ❤ We will see you in heaven our sweet angel girl ❤ With deep sadness, deep love and joyous remembrance, Dee & Paxton"

 

 

 

 

Happy Father's Day

 

Fiona has never said a single word to Paxton, nor is she likely to on this earth.  He will never teach her how to ski, go to a father/daughter dance with her, or walk her down the aisle to give her away.  But the beautiful bond these two share - not even GM-1 can mar that!  When we welcomed Fiona into this world, Paxton had no way of knowing he would be raising a terminally ill child, had no way of anticipating the many challenges that would test him and force him to face life head on.  Yet from the very beginning he took on this vital role of fatherhood with strength and unconditional love.  It wasn’t the fatherhood he’d expected.  He held me up when I couldn’t stand on my own, and told me that as long as we stuck together, nothing else mattered.  Paxton has done the bravest thing by making life carry on; it's going to work each day and pretending to bosses and co-workers like everything is normal just so the pay check keeps coming in and the medical insurance doesn’t lapse. Its saying “Great” when co-workers ask “how’s it going” instead of, “terrible, my little girl is at home with a lung infection and I want to be at her side in case she doesn’t survive the day.”  Sometimes its retaining his sanity so he can be become my rock. Sometimes it’s just listening when no one else understands.  He is Fiona’s biggest advocate, the researcher of GM-1, the record keeper of all her medical files, the communicator with all her specialists, the fighter of our insurance rejection claims, the keeper of spreadsheets of seizure activity, weight, ketone level, blood glucose, current prescription medications, unpaid medical bills, and the pusher of wheelchairs.  He’s the hug giver, the hand holder, the rock and strength of our family, and the beautiful part of Fiona’s life and mine. For the past 4 years I’ve watched Paxton treat Fiona as the priceless gift she is. He is a gentle, loving, kind, intelligent  man who is not afraid to love our family openly and fiercely.  I want to wish the biggest HAPPY FATHER’S DAY ever to my amazing husband.  He has been such an amazing father to Fiona throughout the years even though his job at work and his job as a father have been much harder than the typical dad experiences.  Special needs dads are in a category all their own and in my humble opinion, they don't always get the credit they deserve.  To all the different types of Fathers out there. YOU ALL ARE NOTHING SHORT OF AMAZING!  Happy day to all of you; I hope you are able to spend it with the ones you love the most! 

 

 

 

Let's Find A CURE!!!

 

Home School

 

This morning Fiona had her special needs school at our house. She did a great job today with various activities and had so many expressions on her face. I know she enjoys the interactions.  I also learned that she didn't enjoy getting slime all over her feet as was one of the interactive activities.  Although Fiona does not attend a “traditional school,” she is still receiving educational experiences within the safety & sanitation of our home & I’m grateful to share these experiences with her.

 

Fiona has taught us a great deal about what truly matters in life.  She has also revealed to us that anything & everything is possible.  If you are a parent raising a child with a health condition, whether it is cancer, autism, a rare disease, deafness, learning disabilities- the most important advice I can offer is to educate yourself about what it is that your child is facing and to seek the best possible treatments. I thank God that we came across amazing families that helped us along this journey, doctors that really care for Fiona,  and all the resources we need to provide Fiona with the best treatments and necessary programs available. 

 

Oddly enough, this story of a family planning a trip to Italy helped me a lot when Fiona was diagnosed. It was a family that dreamt for years about traveling to Italy. They bought books, learned the language and planned every detail of their trip. When the day of the trip finally arrived, they felt really prepared! When they landed, the flight attendant's announcement welcomed them to Holland. "Holland???" said the family. "What? We're not in Italy? But we have everything set for Italy!" Needless to say, to land in Holland was not what they expected or prepared for and their journey turned into something different--with sights, people and places unlike what they had anticipated & hoped for but still an amazing and true learning experience nonetheless.

 

My family's journey since Fiona’s arrival has been much like this family's trip to Holland: unpredictable and new but oh so very fulfilling and blessed with wonderful surprises.

 

 

My Hands Are Full

 

 

When you are a parent of a child with a rare disease, there’s much to consider & remember when going about your days.  When needing to leave the house, its not quite as simple as asking your child to hustle along into the car with a bag of snacks & activities to preoccupy them while you attempt to cross a few errands off your to-do list.  I don’t have to worry about making sure my toddler is holding my hand when we are in parking lots and I don’t have to teach her not to talk to strangers.  What I do have to think about, however, is all the support equipment I need to have ready at a moment’s notice.  I have to think about the germs to which I am exposing my daughter’s lungs. Although I don’t draw the attention of others due to my toddler’s temper tantrum at the gas station or her spirited performance of her favorite song in the middle of a grocery aisle, we do draw a different type of attention.  A type of attention that only families who share the similar life experience of having a member with many medical needs could understand.  It is what my life entails & I’ve learned to better understand it & proudly live it each day.

 

I used to be nervous at the beginning when we took Fiona out of the house. Some of the concerns that ran through my mind included: What if Fiona has a seizure? What if she stops breathing? What if people notice that our daughter is very sick? My anxiety is not because I am in any way embarrassed of Fiona, but as a private individual, the idea of drawing attention to myself or to my family made me slightly apprehensive.
Our lives are remarkably different from that of our friends and families.  Whenever we leave the house (even if just for an hour) our car is packed with an oxygen tank, suctioning machine, extra feeding tubes, emergency seizure medication, and syringes of food.  Longer excursions require more equipment. Trips also have to be planned well in advance to coordinate with oxygen delivery and therapists’ visits; there’s no such thing for me as doing something last minute. Our lives lack their former simplicity and security but I assure you that there are still just as many moments of happiness & joy. 
 

When we are in public places, adults usually glance down at Fiona then quickly redirect their gaze, sometimes smiling uncomfortably. Children, curious by nature, always notice that Fiona is different from them and will stop what they’re doing to stare at her until their parents notice and swiftly whisk them away. In the beginning, the reactions of others used to unsettle me. Their reactions used to emphasize to me what I already knew: that our family no longer fits the mold, the false illusion of what’s ordinary.  It’s understandable to be curious about noticing something in your vision that isn’t seen often, but when those opportunities occur please notice with love & kindness.
 

Fiona had a doctor’s appointment today and as I walked through the hospital clinic I elicited a comment.  "Boy, you sure have your hands full!"  What I want to say in response is "Oh boy, and you've lost your manners!" But instead I just smile.
In fact, I have realized just how much truth there is in these strangers’ bold comments.  My hands are absolutely full!
 

My hands are the part of me that:
- brush Fiona’s hair off her face when I give her kisses
- hold and comfort her every second I have
- mix and administrate myriad of daily medications 
- feed her and bathe her
- move her arms and legs so they don't stiffen
- flip the pages to all her favorite books as I read to her
- play instruments for her to hear 
- assist her in doing arts and crafts
- wipe her tears when she gets shots
- rub her hands and feet when they get cold
- stabilize her tummy when it shakes from clonus
- suction her mouth and nose of fluids  
- provide oxygen when needed
- reposition her so she’s comfortable
- perform nebulizer and cystic fibrosis VEST treatments to clear her lungs
- capture many beautiful photos of her.
 

So you are darn right my hands are full- full of love & care & happiness for Fiona and my family.
I hope it is my hands that hold her when she leaves my arms to rest in Jesus’ arms. My hands are not burdened at all. My hands are blessed, and I am so thankful that I was chosen to be Fiona’s mama. 

 

 

Parenthood

 

 

Last night Fiona was restless.  I looked at the clock; it read 1:45 am.   I kept saying out loud "please sleep," but it didn't work.  I scooped her from the bed, placed her in my arms and then laid her right next to me.  I snuggled her in the blanket and she became calm.  We just laid there together looking into the dim light in the room.  The clock now said 3:30 am and she finally fell asleep in my arms. Maybe, just maybe... she just needed her mama.  I felt her littleness in my arms, the way her body tucked so perfectly right into my body.  I could feel her smooth cheek against mine and hear her soft breaths.  I could feel her trying to reach her tiny right hand on my chest as if she needed to be reassured one more time that I was really there.  And then I heard this in my head, "so this is what parenting is all about."  It's about love.  A love that is so deep, you can actually feel the huge space it takes up in your chest.  A love that is so overwhelming, it stops you in your tracks when you try to wrap your head around it.  A love that has the propensity to instantly swoop your mind off into a magical, timeless dream filled with sweet & precious memories of the past, memory upon memory.  A love so powerful, unimaginable & indescribable that it could only possibly be understood after actually becoming a parent.  I started thinking that I may not have these moments with Fiona when she's not with us anymore.  Waking up tired in the morning no longer mattered because this moment with her was everything.  And when it comes down to it -- all the time, the limited, bounded, finite time we have with Fiona consists of these collections of moments that we are able to share together now,  in the present moment.

A New Road

 

I am taking the very first steps onto a new road but remain on the same journey. Today we met with the new therapists and teachers who will help us transition into the special needs school system. Fiona will have completed the ‘Birth to Three Program’ the day before her third birthday and needs to continue with her existing therapies in the special needs school system. We discussed the various therapies she needs and also determined that everything will be done in our home, just like before. We can't risk exposing Fiona to the other kids with her immune system being so weak. It was a productive meeting and we accomplished much.

When I was pregnant with Fiona, I had visions of her going to school and then she would come home and tell me all about her day. We wanted to give Fiona every opportunity in the world to flourish and be a productive member of society. Like most parents, we wanted our child to be comfortable and happy.  We wanted her to have a positive self-image that would promote positive self-esteem.  We understood that a child must have a strong foundation from the beginning and felt that it was our responsibility to build this foundation for her.

It's been a very different path than I imagined for my little girl. I know it's not the end of the world. I just have to release my very personal, unrevealed dreams that I had hidden in the corners of my heart for my little girl...
 

 

Time, Patience and Love

 

 

 

As I look back around the time that Fiona was first given her diagnosis of having GM-1, I am able to share a few lessons I’ve learned through my experience.   I recall having done a tremendous amount of research online about metabolic storage diseases in order to prepare myself for the diagnosis.  Even though I tried to prepare myself, the diagnosis was still a kick in the gut and I found that really no amount of research or reading could truly prepare me for this experience these past nearly 3 years. There was that small part of me that thought the doctor would say Fiona was “normal” and that there was no need to worry, but…that just wasn’t the case, that is not what was in store for Fiona, or Paxton and me as her parents.


On the day Fiona was diagnosed, I cried and held on to Paxton. I went into our room and cried some more.  I buried my head in a pillow and screamed as loud as I could.  I was heartbroken, angry, confused.  I had read somewhere that after a diagnosis, there is a series of emotions that a parent goes through, I felt them all – and some emotions are better left unsaid.


Nothing I read prepared me for the years ahead.  Not a single book or online research prepared me for the hardships of parenting a terminally ill child or the heartache I’d feel when seeing other kids Fiona’s age on the playground down the street playing happily.  None of it prepared me for the revolving door of therapists in and out of my home or the daily care that is demanded of me.  Nothing I read prepared me for the emotional toll it takes to parent a terminally ill child nor the advocating for my child’s rights and needs.  

 

On the other hand, those books and online research also never prepared me for the excitement I’d feel when Fiona sat for the first time or for the joy I’d feel watching Fiona giggle and laugh when her father would talk to her or for the tears I cried the first time she babbled endlessly while watching Sesame Street.  In the last three years since Fiona's diagnosis, there have been so many firsts and I’ve treasured all those happy memories.  They are the memories that keep me going on the really hard days.
That’s the thing about raising a child terminally ill - in time you can find peace with it & embrace it, knowing that there is no cure for it.  But to prepare for & accept it is altogether something else.   I’ve realized that acceptance is not a one shot deal, it’s an ongoing process.  There will always be something new to accept.


I spent a lot of time preparing for parenthood and even more time preparing for special needs parenting, searching for answers to all of my questions.  Over the years, I’ve realized that you can’t prepare for it – it’s not a test you can study for. You will never find the answers searching online or in a book.  The real answers come with time, patience and love – and Fiona taught me that.



 

 

 

The Strength of an Egg

 

 

 

Fiona’s condition is stable and she’s comfortable as of now.  She is getting bigger and growing, and her seizures have been under control-some days she's seizure free.  We keep her on oxygen as needed to make sure that she stays comfortable when we see that she is struggling to breathe or when her oxygen saturation drops below 90%.  Fiona had her Synagis (RSV shot) this morning and a "weigh in." She has successfully gained a pound since her last shot 4 weeks ago and now weighs 24.7 pounds. Our house, for the most part, has been quiet. 

 

This article was passed on to me by another mom of a terminally ill child. I can really relate to it and feel it’s a good description of what I endure and feel as I face the day to day challenges that come from caring for Fiona.

 

The Strength of an Egg

by J. Freitag

Parents of children with a terminal illness are often referred to or viewed as having strength “like a rock.”  Although flattering, it isn’t quite true.  It is more like the strength of an egg.  An egg, you ask? Yes!  If you’ll think about it, you’ll see my point.  An egg has a polished, smooth outer appearance, with no cracks or weak spots visible.  It seems almost inconceivable that the inside might not be so smooth or solid. Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.  A rock, on the other hand, is solid all the way through.  To break it is almost impossible.  If you succeed, you will find that there is nothing inside but more rock.  It takes a lot more than pure hardness to hold the hand of hope.  Parents of [medically fragile] children are not solid all the way through.  We hurt, we fear, we cry, we hope.  It takes a very careful balancing act to keep the shell from being shattered.  “Balancing an egg” while running a household, going for doctors’ visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed!  Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.  Unlike Humpty Dumpty, though, parents of medically fragile kids will pick themselves up and put themselves back together again. 

 

 

Our Love

 

 

Last night Paxton and I wanted to see what Fiona would look like if she could stand up.  I held her up and had her feet on the floor.  Paxton held her hands while we both told her how much we love her.  We pictured her running around the house, playing with her toys, and standing right under us asking for cookies.  She brings more joy to my heart than it could hold, yet at the same time I also feel more heartache and pain than it can hold too.  I know Paxton feels the same. I could see the deepened expression settling in his face and hear the pain in his softening voice.  I can read the words lodged in his heart, the ones he doesn't let go.  I know what he wants, what he wishes for and how much he loves.  I think about what this journey has brought into our lives and what it ultimately will take away.


These are all things we never in our wildest dreams thought we would have to deal with, but in our reality it has become what we have had to learn.  You do that for your kids.  We have settled into our not so normal life, which for us has now become normal: various therapy routines,  doctors’ appointments, sleepless nights.  We spend more time with doctors, therapists, and nurses than we do a lot of our friends.  Being a parent of a child with a rare disease has a tendency to take over your social life and what results is a “not so normal to most people but very normal to you” type of schedule and routine full of health-related activities that are necessary for the continued survival of your child.  There are many things that most parents couldn’t imagine having to deal with that Paxton and I couldn’t imagine living without.  Feeding tubes, oximeters, nebulizers, suction machines, oxygen distillation machines,  doctor’s appointment after doctor’s appointment, time-consuming research and reading-it’s a lot, but it’s our life, it’s what we must do.  Not many parents have to worry about limited time with their child, but we have to accept that GM-1 will take our Fiona away from us. It’s an unbearable pain for a parent to have to live with such a prediction for their child; it’s a pain in which our hearts are broken by love, by wishes, by hope for a different outcome.

 

 

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