The Story of Braden

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!

It's time again for another birth.

Said the Angels to the Lord above,

This Special Child will need much love.

His progress may be very slow,

Accomplishments he may not show.

And he'll require extra care

From the folks he meets way down there.

He may not run or laugh or play,

His thoughts may seem quite far away,

In many ways he won't adapt,

And he'll be known as handicapped.

So let's be careful where he's sent,

We want his life to be content.

Please Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they're asked to play,

But with this child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD.

  

by Edna Massionilla

21 years ago today my greatest life-altering event took place.  Braden was born.  I've been thinking about it a lot this week, actually...partly because I can't believe it's been 21 years yet it feels like just yesterday.  Recently we were watching some home videos from 2003 and I saw some pictures of Braden and it really showed me how much his poor little body has become more stiff and twisted over the last ten years--it happened right under our noses and we didn't even notice because we see him every day and it has been a slow process.
I realized the other day that because I have never been good at keeping a journal, I've never really written down the story of Braden, the events surrounding his birth, and all that has happened since then and I decided that his birthday might be the perfect day to spend some time reflecting on it and get the story down so that future generations will know him.  I'm sure the writing of it will make me an emotional train wreck, but here goes:

Braden was born on July 27, 1992--10 days before he was actually due, but he didn't just show up early.  I woke up one morning and after serious contemplation I really felt like he was not moving as much as he used to or should be, but being a first time mother, I really wasn't sure I wasn't just being a nervous pregnant lady.  After discussing the situation with my husband, we decided it was best for me to check in with the doctor just in case.  I ended up in the labor and delivery ward of the hospital having a non-stress test, and as it turned out, they couldn't get him moving either.  My doctor calmly came in and informed me that there was something that the baby just wasn't liking and we should probably be getting him out of there.  He was SO calm, in fact, that I had no idea what a big deal it was even after the nurses came in and started fussing over me in a big fat hurry to whisk me off to the delivery room for an emergency C-section.  After that I don't really remember much for awhile.
The next thing I DO remember is waking up in the recovery room, seeing Patrick sitting by my bed, and asking him, "Is the baby okay?" and all he said was "no".  Through a fog of painkillers that were way too strong and the sickness they caused, I have vague memories of being pushed into the room where the baby was and reaching into the warming bed to briefly touch his hand.  I remember bits and pieces of a conversation with the pediatrician, and I remember them bringing the transport unit into my room for me to see him one last time before he left on the Life Flight helicopter headed for Primary Children's Hospital.
 The doctor had needed to revive him with a bag and mask right after birth to get him breathing at all. Eventually we would find out that something had happened to the placenta (it had started to die and pull away from the uterine wall) and the umbilical cord was too short and narrow to provide him with what he needed.  He had been oxygen deprived for an unknown amount of time before birth, and then he had a stroke during birth--leaving him with brain damage in two separate areas of his brain.
As I already said, he was sent on the Life Flight helicopter to Primary Children's Hospital four hours after he was born.  Because of my surgery, I was stuck in the hospital in the maternity ward with no baby for four days.  They took a Polaroid picture of him at the hospital and Patrick brought it back for me, but that was all I had.  Leaving the hospital with no baby and going home to an apartment with a nursery all ready for a baby that was not coming was perhaps the hardest thing I had ever done. I remember sitting in the doorway of his room staring at all the baby stuff including a mobile with pastel bunnies that Patrick had bought when we first found out I was pregnant and crying hysterically, wondering what I had done to deserve this.

Braden and me in the newborn intensive care unit.  He had shaved areas all over his head because they was the best place for putting in an I.V.  After so many I.V.s, he barely had any hair left.

Braden spent the next 28 days in the newborn intensive care unit.  During his time in the hospital he actually made very good progress towards recovery and doctors expressed optimism than maybe things would be okay...or at least not as bad as they had feared.  When he finally came home it felt like a miracle but I think I was in denial about what was really coming.

Days after coming home from the hospital.  He had bruises around his nose and eyes from the resuscitation and a feeding tube in his nose so we could make sure he got enough food and all of his medicine.  In this picture you can see him looking at the camera but that would soon change. 

He came home with a feeding tube in so we could monitor how much he was getting to eat, and he was on some medication for seizures (they suspected he'd had one while in the hospital) but he was a good baby!  He rarely cried, slept well at night, and started eating well enough that we could permanently remove the tube after just a few days.  We were so happy to have him home!
A home health nurse was assigned to come visit him once a month to check on his progress and his health and for the first several months things went very well.  Then around five months, one night when Patrick was feeding him, he said he noticed him doing some very strange repetitive jerking motions.  He was concerned that he was having some kind of a seizure...but again, I was in denial...so that couldn't possibly be what was happening.  But after a few more months of the nurse visiting, she expressed concern that he just wasn't progressing like he should be--he should be sitting up, he should be able to roll over both ways, etc.  She recommended that we take him in to a neurologist again just to be sure things were okay.
So off we went to the doctor again.  Patrick explained the jerking that he'd seen and the doctor confirmed that yes, he was having seizures.  He was later diagnosed as having a very difficult-to-control seizure disorder called Lennox-Gasteaux Syndrome--basically what it means is that he has so many seizures of all types that we can't control them all so we have to pick and choose the worst and make due with the rest.
Once the seizures started in earnest, it was all downhill from there.  Suddenly his vision was gone--explained as cortical blindness (his eyes are fine but his brain can't process vision), his hearing was impaired (but because it can't be tested very well, we still don't know exactly what he can hear) and ALL progress stopped.  And now, 21 years later, it's as though he was frozen in time as a six month old baby--he does today what he could do then and no more.

Braden at 6 months.  These pictures were very hard to take because he could not sit up unsupported

He was diagnosed as a baby with cerebral palsy and we have watched for all these years as his poor little body has tightened up and twisted until his skin rips and his bones protrude in unusual places.  He has a dislocated hip that the doctors have determined is better off left where it is as opposed to fixing it.  And he is fighting off scoliosis as his spine has begun to turn (thanks to some amazing, wonderful, capable teachers and therapists this process has been a lot slower than it might have been).  He takes four different types of medication that work hard to control the seizures as much as possible, but in reality we see a lot more seizures than we'd like (anywhere from a couple to a couple dozen a day--some much worse than others).  At his last EEG we were informed that his brain is constantly misfiring--nothing but constant seizures all the time--so the medications really do suppress a lot of them.  But this explains why he can make no progress--who could learn with all that going on?  It has been a long, hard road.
The very hardest thing for me personally over the years is the milestones we have passed with unfulfilled expectations.  When Braden was almost one year old, the people living below us in the apartment complex had a baby the same age.  I remember watching out the window as they were on the sidewalk with him taking his first steps while my baby was laying on the floor on a blanket, unable to even sit up.  It was the day I realized we were going to have a lot of these firsts that would never come--no first words, first steps...and that has truly been the case.  There was no first day of Kindergarten at five, no baptism at eight...no driver's license, no first date...no high school graduation, mission, marriage, grandkids....and there never will be for him.  Each time we hit one of these moments in time when big things should be happening my heart breaks again for what will never be for him...at least not in this life.

At age 2 we tried to get pictures of him but it was very hard.  There was no way to get him to sit up so Patrick had to jump in the pictures with him.  They ended up being some of my favorite pictures of all time.

Having Braden in our family has not been easy on any of us, most especially my other kids.  Our family isn't like other families--we can't just decide at the drop of a hat to go on a vacation, or to the movies, or even out for ice cream.  Everything takes advanced planning and preparation.  Braden isn't happy a lot of the time (I'm sure he has a lot of pain) and when he's unhappy he can easily make the whole family grouchy.  When the kids have events for us to attend, it usually means just one parent because someone has to be home.  We have to be very careful about letting people around us if they are sick because having Braden get sick is torture--especially for poor Patrick who is the stalwart perfect father than always takes good care of him and has lost many nights of sleep during Braden's illnesses.  I don't think that people that don't care for a disabled family member have even an ounce of understanding of what this is like--they can imagine that they do, but until you've done it, you really have no idea how it changes your entire life.

Braden with his brothers.  Getting a good picture with Braden AND a toddler was really a challenge.

But now, especially on a day like today, since it is his birthday and all, I want to reflect a little bit on how Braden has truly blessed our family.
For one thing, while I have heard many stories of how marriages fell apart when faced with a challenge like this (usually the husband checks out and eventually leaves), our marriage has been strengthened by it.  Mostly because Patrick is the perfect father for Braden--he has loved him and cared for him like no one else could possibly have done, and I could never have done this alone.

I also like to think that my kids have learned about Christlike compassion and service by having Braden with us--things they would otherwise not have had the opportunity to learn.  I know it hasn't been easy for them, but I remember once when Savannah was little and I came in the room and she was rubbing lotion on Braden's hands because they looked dry.
I, personally, have learned what it means to love someone with no reciprocation...yes, maybe in his own way he loves us, but he certainly can't show it or tell us.

One of the best ways I have been blessed is the wonderful people I have met.  The therapists and teachers that we have come to know over the years have been truly amazing!  They love these kids like they were their own.  They choose to spend their days doing this extremely hard work and you can see how much they care when they are interacting with them and talking about them. Patrick and I have a running joke about how I hate all people because they annoy me but knowing them has renewed my faith in humanity and the goodness of people.  Without having Braden I would never have had the chance to realize that these great people exist.

And then, for the best blessing of all--I have developed a new faith in the atonement and the plan of salvation that would never have been possible without this challenge in my life.  I truly know how special and wonderful Braden is and what an important role he is playing in the lives of those that care for him...and I know that despite the fact that he will never get the chance to live a long and fulfilling life at this time, he will get the chance again later--when his body is healed and perfect. I also know that families can be forever, so I have faith that I will get to see him again when that has happened.  I hope that someday when I see him in the next life he will be willing to forgive me all my shortcomings and frustrations as a mother and be able to tell me that he really did know how much I loved him.

Christmas 2012

These days, aside from Braden going to school or the doctor, he doesn't really leave the house because it's just too hard on him to travel (hard on the rest of us as well).  That means if we want to go somewhere there has to be someone here to care for him, which has presented a whole new series of challenges. I don't know how long he will be with us--even though he has relatively good health, he takes a lot of medications that are doing a number on his liver, and eventually his twisted body is going to give out and the scoliosis will take over.
When Braden was young, I found an essay called "Welcome to Holland" and I have always kept a copy and read it often.  I feel like it is such a simple yet accurate way to describe this journey we're taking.

WELCOME TO HOLLAND

by Emily Perl Kingsley

©©1987 by Emily Perl Kingsley.

All rights reserved

I am often asked to describe

the experience of raising a child with a disability

to try to help people who have not shared

that unique experience to understand it,

to imagine how it would feel.

It's like this......

When you're going to have a baby,

it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans.

The Coliseum. The Michelangelo David. The gondolas in Venice.

You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.

You pack your bags and off you go.

Several hours later, the plane lands.

The stewardess comes in and says,

"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? 

I signed up for Italy! I'm supposed to be in Italy. 

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.

They've landed in Holland and there you must stay.

The important thing is that they haven't taken you

to a horrible, disgusting, filthy place,

full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books.

And you must learn a whole new language.

And you will meet a whole new group of people

you would never have met.

It's just a different place.

It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while

and you catch your breath, you look around....

and you begin to notice that Holland has windmills....

and Holland has tulips.

Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...

and they're all bragging about

what a wonderful time they had there.

And for the rest of your life, you will say

"Yes, that's where I was supposed to go.

That's what I had planned."

And the pain of that will never, ever, ever, ever go away...

because the loss of that dream is a very very significant loss.

But... if you spend your life

mourning the fact that you didn't get to Italy,

you may never be free to

enjoy the very special, the very lovely things ...

about Holland.