Sunshine Always Follows the Rain

Five years ago, I was asked to write a story about how Tuberous Sclerosis Complex affected our lives. We were 2 years into our journey at the time and looking back, even then we had hope. Here is the story~

My entire life changed the day I became a mom. I was

handed this beautiful, perfect creature, who had deep

blue eyes and swirls of blond curls. As she curled her little

fist around my finger, I was hooked. I gave her my

whole heart and entire soul, in one tiny instant. I

dreamed of the two of us playing dress up, going shopping,

having tea parties, and putting make-up on each

other. I imagined showing her how to throw a fast ball,

how to drive a car and watching her walk down the aisle,

as she married the man of her dreams. I also pictured

her holding her daughter in her arms and thought, life

couldn’t get more perfect than this.

Kylie was 4 months old when she had her first seizure.

We were lying in bed together one morning, when she

started sticking her tongue out. She was moving it in and

out, in a rhythmic motion. Her eyes started deviating to

the left and then she fell asleep. I stared at her, in shock.

Being a nurse, I knew she just had a seizure, but my

heart wasn’t ready to accept it. I took her to the doctor,

where she checked out just fine but they sent us to a neurologist, more so to calm my “new

mother jitters.” She checked out fine there as well, and we were sent on our way. Life was

good again.

Two weeks later, Kylie was rushed by ambulance to Children’s ER in St. Paul after experiencing

another seizure, this one lasting longer and scaring the heck out of all of us. She

received Phenobarbital, making my baby literally unconscious for two days. We were

brought up to the pediatric epilepsy floor and I remember thinking, we don’t belong here.

There were kids in wheelchairs, wearing helmets and drooling. My baby just had a reaction

to her baby shots, and we would be going home soon. How naive I was and how I wish

it could’ve been that simple.

I remember the pediatrician and neurologist coming in to talk to us, stating ever so kindly

that they had a suspicion Kylie had tuberous sclerosis complex (TSC). An MRI showed two

tiny spots on her brain, but the scans were being sent to a few different neurologists across

the country. One day, a team of doctors came into our room. From that moment on, I knew

our lives would never be the same. My heart broke into a million tiny pieces as I cried for

my baby and grieved for the life we would never live.

It has been just over two years since Kylie was diagnosed. Some days it feels like we are

on a roller coaster. We have had some really, really, really good days and an equal amount

of really crappy ones. Kylie had a two-month break from seizures when she was 14 months

old but they came back with a vengeance. We spent a month in the hospital, where the

seizures finally stopped cold turkey. She went from 17 to 27 months of age without a

seizure, and I had days when I almost forgot she had TSC.

She finally started to walk at 26 months, and I can’t even begin to describe the joy in my

heart. She worked so hard for so long and she did it! There is nothing more magical than

seeing your child achieve milestones for the first time, and I think because we had to wait

for so long, it was even all the more special. She was doing so well that she was weaned

off a seizure med (she was on five medications at the time). Unfortunately, we chose the

wrong one to wean. She ended up back in the hospital, seizing nearly every three minutes

at one point in time and having roughly 100 seizures a day. After two weeks, we went home

and the seizures have once again stopped. We pray every day they will continue to stay

away but realistically, we know they can come back at any moment.

TSC has changed my life in so many ways. I have come to the realization that life is a gift—

it can be altered or taken away at any given time. We do not get to choose the life we are

given but we can make the most of what we have.

Am I angry that TSC has robbed my family of normalcy? Of course. I long for the ease of

the lives my friends lead, one that doesn’t involve having a child sleeping in between my

husband and I, one where I wouldn’t have to turn around and drive home because I forgot

the Diastat®, one that didn’t involve weekly doctor appointments, daily therapy

appointments and the mass chaos of trying to keep Kylie’s paperwork all organized. I would

be totally ok without knowing how to decipher what an EEG recording says, to not know

what all of the different seizure types are and the names of all of the top TSC specialists

names in the country.

I can name all of the seizure meds out there, even the ones in clinical trials and what the

normal lab values should be for a child. We should be going to dance class, not therapy

appointments. We should be running in the grass, not falling on our hands and knees. We

should be shushing Kylie for talking too loud, not clapping for each new word she says.

But do you know what we are doing? We love our sweet girl, each and every day we have

that can only make you laugh with her. She is kind, gentle and beautiful. We may be falling

every few feet we run, but when we are sitting in the grass, we are exploring ant hills and

lady bugs. We are splashing in puddles just because it rained and cheering her on whenever

she says something new. Every day is a party at our house.

We have met some of the most courageous and inspirational people that I now have the

privilege of calling friends. We have learned which friends will be on our doorstep at 1:00

in the morning just to wipe away our tears and which ones just won’t. I have seen so many

different people come together to pray for us; some I would have never met if Kylie would

not have been sick. I have learned that I am much stronger than I would’ve once thought

and that the love of family is stronger than anything else in this world.

I don’t know where we will be 10 years from now, five years from now, or one year from

now. I don’t even know what tomorrow will bring. I do know that I have an amazing, strong

and beautiful daughter, despite TSC. It does not define who she is or who our family is.

Every time Kylie wraps her arms around me and whispers, “Ma-ma,” I melt. When she

blows kisses to me as I am leaving for work, I know I will have a good day. She has brought

many blessings into our life and I wouldn’t have it any other way. We continue to have hope

for her future and that tomorrow will continue to bring smiles, giggles and sunshine. (copyright of the TS Alliance, 2007- for more info, go to www.tsalliance.org.)

Watching the news tonight, they featured a story about a family who was told they should not do any heroic efforts to prolong their son’s life- that he would face a lifetime of struggles. The family talked about how much he changed their life and only for the better. I think that unless you become the parent of a special needs child, you may not even be aware of how much these kids can change your life. Yes, there are struggles along the way. No one wants to watch their kid suffer seizure after seizure. Or to spend weeks or months in the hospital, to be poked and prodded, to hit every single milestone late, if at all. But there is joy. And love. And pride when they finally hit that milestone you have been waiting 2 years for. I sometimes wonder how different our lives would be, had we never experienced being special needs parents. Sure, it would probably be easier. Less complicated. But it wouldn’t have been as beautiful. Our daughter, whom we thought would never talk, was singing Justin Bieber songs in the car today. The one whom we feared could not learn, because of the thousands of seizures she had, knew her entire alphabet by age 3. At 7, she is reading. Reading. I don’t know who is more proud- me or her. We have been passing around a lot of high-fives and fist bumps lately. Her siblings get just as excited as we do, every time she learns something new. They are learning a type of compassion that can't be taught from books but from a deep love & pride they have,  just from being Kylie's sibling. The experiences we have in life are what make us who we are. They define us. Some our good, some are bad. Some are heartbreaking beyond belief. But without these experiences, we would never have gotten to experience wonderful.