I asked for her to be taken away and that’s what Boy did. He had been unaware of many of the things going on partly because I didn’t want to bother him with all of it, and partly because he was busy working.  He knew our baby was different and that she was a handful, but many of the events of the day I kept to myself.  It’s my problem, she’s my responsibility, it’s my fault she is the way she is.  And so there it was, hello GUILT.  They say that it’s part of the grieving process when you lose a loved one, and that’s just what happened in my case.  I lost the vision of my perfect little girl, of my ‘trip to Italy’, of my happily-ever after.  Guilt would creep in and start to play a huge part in everything I did and felt.

So Boy stepped in to save the day. He took her to his family’s Thanksgiving celebration in a small Texas town.  I was relieved and ecstatic.  I would shop, watch TV, sleep, drink wine and do whatever I wanted for a very quiet and long weekend.  It was just the medicine I needed and had been craving.  I didn’t feel bad about it at all because I deserved it!  I thought to myself, this will go down as one of my most favorite Thanksgivings-just some time away from her and that’s all I need.  Then the phone rang………I answered happily, how could I feel anything else on such a blissful day?  The news my mother-in-law shared on the other end turned my body ice cold.  My little girl had suffered a seizure while in the bathtub and had to be taken to the local clinic, they needed me to call with her doctor’s information and phone number.  “It’s OK sweetie, don’t worry, she’ll be fine.”

I stood there shaking uncontrollably, but called with the information that was requested.  “How is she”, I asked.  Boy had no time to give me any information, it wasn’t good, he had to go and be there with her, and he would have to call me later.  So, all that was left for me to do was sit, cry and think about how horrible I was for wanting to be away from her and how I’m not there with her now.  What if I lost her?  All I could think about was, it’s MY fault, and this wouldn’t have happened if I had been there with her.  Another phone call later and my mother-in-law reported that they were having to life-flight her to a bigger hospital and Boy was with her on the helicopter.  I got myself together and packed for the drive to be with that little girl I was enjoying time away from just hours before.

Ummm, excuse me, Guilt…will you just leave now or have you parked yourself in the middle of my chest?  It feels like you are there and you weigh as much as an elephant.  I hope you don’t stay long because you are not a pleasant guest to have around.  That next morning, I walked into the hospital room to find her laying motionless, eyes shut, machines breathing for her and tubes all around.  The doctors and nurses were prepared for my arrival and were at the ready with words of reassurance.  “Oh, hon, she’s a fighter- a tough little girl, but she’s been through a lot and she’s taken a hit.”  Little did they know that I was being beaten up on the inside the whole time I was trying to be strong standing there choking back tears and feelings of immense guilt.  That was the hardest thing I’ve ever done and it got worse.

As we stood there looking at our little girl, Boy finally had time to tell me the story. He had been giving her a bath when he saw that “look in her face” and the seizure started.  By the time he got her out of the tub and wrapped her in a blanket she was seizing violently.  He jumped in the car with his father and they found the nearest clinic that was open on Thanksgiving night.  It was desolate in the parking lot, not a good sign.  When he got inside the doors he started yelling for help with this baby in his arms fiercely seizing.  The few staff members that were on call that night started scrambling, they weren’t prepared for this kind of emergency with a very young child.  And it was obvious to Boy, that they weren’t experienced with this sort of thing either.  He watched in horror as his baby girl almost came off the table while her seizure continued.  They had to quickly administer medication to her to stop her seizure but didn’t have the pediatric supplies they should have had.  She quit breathing once her seizure stopped and had to be intubated to save her precious little life.  I could tell that Boy had been through his own little hell that night; was he feeling the same guilt as I was?  Or was he quietly blaming ME for not being there with him.  As he continued to tell me the story, I felt GUILT crushing my chest even harder.  Shortly after they intubated her and gave her medication to counteract the valium they had administered to stop her convulsion, her seizure started up again as violent as ever.  Boy reported that’s when he was the most scared as he watched the IV come out of her arm, blood spouting everywhere; he thought his little girl was dying right then and there.

The weather that night had been stormy and dangerous and the life-flight helicopter that was called almost didn’t get to take off.  The crew desperately knew that if she was going to live she was going to have to get out of that clinic so they made the decision to go up in the air.  Boy was on the helicopter with her and when they received the recommendation that they would have to turn around and head back to that unfitted clinic due to the weather, he looked at the pilot and begged him not to head there, please anywhere else but there.  They promised him they would find somewhere else and they thankfully made it through the storm and found a hospital with a pediatric intensive care unit that could handle everything our little girl had been through.

She’d taken a ‘hit’ was what the doctor had said and it never really registered what he meant until she had woken up several days later.  The only thing she would do was rock back and forth, ring her hands, and moan inside that little iron cage they had her in.  I spent hours holding her, singing to her and quietly telling her “I’m sorry”.  It was our little secret, “I’m sorry baby for not being there for you, for not being the mother that God wanted for you, I’m sorry for not wanting you and I’m sorry for hating you.”  I was left to face the thought of now having a child totally opposite of what she had been in the past. Would she ever run, climb, dance, sing, laugh, and be her vibrant self again?  Be careful what you wish for because you might just get it. I found myself running through the hospital in search of the chapel; making my way there hiding the tears that were falling down my face.  I sat in the pew and cried thinking to myself how could this happen?  I’m sorry for doubting you God, was this some kind of punishment you had for me?  I’ll do better, I promise, if you just help her and make things right again, I’ll do better.

Seeking solace in something is all part of the coping process.  Perhaps God did have a plan for us and maybe He did choose us for this ‘special’ purpose. It all sounded soothing and at the time it gave us some sort of  explanation for the insanity we were experiencing.  People would say, “God never gives us more than we can handle”, and then they’d smile and say they would pray for us.  They would tell me, “God knows what he’s doing, just trust Him, He picked you for a reason.” So, I started believing them; after all, people had been telling me all my life how patient, sweet, and kind I was.  My mother even nicknamed me “GiGi” because I was such a ‘good girl’. I decided to just accept the fact that I was CHOSEN for this mission. My new job became my daughter.  Our dream of a big house, money, and success would be put on hold and I would leave my job to take this mission on full force. We had no idea how we were going to survive on one salary and I had no idea how I was going to take care of our little girl. But, like everything else so far, we would just have to figure it out.

Figuring it out along the way seemed like a good idea since so many young parents have to do that anyway.  But the parenting books I had read didn’t have instructions on what to do when your child wasn’t the ‘norm’.  So I searched for ‘alternative’ instructions and about that time I found a story online called ,“A Trip to Holland,” written by Emily Pearl Kingsley.  Its message was touching and familiar to many parents of children with disabilities.  Basically this; you may have had dreams of visiting Italy all of your life and that’s what you hoped and prayed for. You learned the language and read the tour books. But, guess what?  On the way there you find out that Italy is closed, off-limits to you, and the plane is landing in Holland instead! No matter how much you protest, you have to get off while everyone else goes to Italy.  But you haven’t learned Dutch and you don’t know anything about Holland, your heart sinks, you cry, you DON’T want to go.  But you have to get off that plane and when you do, you’re lost….where do you go from here?  It’s only after learning about Holland that you realize it’s just as beautiful as Italy with unique windmills and beautiful tulips.  So, there it is, I just have to learn about and love my daughter for who she is and forget about who she isn’t.  It’s a choice and as Marcy Blochowiak says, “You are always only one choice away from changing your life.” So, here I go Life, I am choosing to change you!

I quit my job and became a stay at home mom, even enrolling my baby girl in a Mother’s Day Out Program after her doctor suggested it to help her with social skills and communication.  “This is going to be great,” I told myself.  I read the behavior books and talked to the doctors.  “Be consistent, be firm, establish rules and set consequences,” they would tell me.  I can do this and soon enough she’ll be fine and on the road to ‘normal.’ Thankfully, at about this same time, she was placed on medication to help ‘calm’ her. It worked and calmed her down enough so that she took several short naps throughout the day.  During those times, I could take a breath, relax and regain physical and emotional strength for when she would be awake.  My Little Texas Tornado, flitting from one thing to another; biting, grabbing, hitting, mouthing, screaming, kicking, scratching and generally causing distress wherever she went.  That’s what it was like when she was awake. Sleep, baby Sleep.

Oh, and that Mother’s Day Out idea………what was I thinking?  Once a week I put my daughter and myself through three hours of pain and anguish.  The staff was comprised of wonderful and compassionate individuals with all of the best intentions.  They provided the moms with a parenting class while the toddlers were in the classroom and they even had a mirrored window so us “moms” could see our sweet little angels interact with each other.  I stood there many times watching my little angel grab toys from other kids, hit them, push them, put things in her mouth, climb on the table, and throw herself on the ground when someone told her “no”.  I bit my lip every time and held back tears, because what I really wanted to do was bawl! What I really wanted to do was turn to those other mothers and say, “I know what you’re thinking but I’m not a terrible mother, I don’t know why she’s doing those things, I just don’t know, please don’t look at me, please don’t judge me!”

None of it was fair! Wasn’t this what I was supposed to do as a mom of a toddler? You know, mom’s groups, play dates, mommy and me gymnastics, blah, blah, blah! Wasn’t I supposed to do all that fun stuff as a stay at home mother?  Nope, NOT me, not this GiGi! I wasn’t Chosen for that!  I wanted to scream, but I saved that for when we were at home……..”why can’t you be like everyone else, what’s wrong with you, what did I ever do to deserve you? I hate you, I don’t want you!”  Yep, I said that………..I said all that and more to that beautiful, conflicted little girl, it was all HER fault.  All that stuff about God choosing me and the beauty of Holland, whoever wrote that stuff knew nothing about me and what I was going through!  It was a sick conspiracy to give people like me false hope! Holland stinks and God doesn’t know what the heck he’s doing!  Please just take her away from me, I don’t want this job anymore, I’m the wrong person for this mission. Dear God, I am NOT the CHOSEN one nor do I want to be!

The seizures started when she was only 8 months old, but that’s only the first ones we saw.  Those “episodes” were probably there long before that.  Looking back on things, there were times we called her name over and over before she would turn our way. There were periods of staring that we thought were so cute, “maybe she’s contemplating life, she’s so focused-oh she’s so smart.”  But, something was going on inside her precious little head, something not so ‘precious’.

That first seizure took us both by surprise.  There we were shopping as a family one Texas spring evening.  Boy and Girl were enjoying one of those grown-up, responsible, married couple activities with our little sweetie-pie.  She was sitting in the front basket of the grocery cart in her pink fuzzy one-piece pajama smiling and waving at people when they walked by.  People would smile back at her and comment about how cute she was; they just couldn’t help it, she really was a doll. Then, all of a sudden, her head started turning dramatically to the side, her eyes locked up into the corners, her face was blank, her lips started turning blue, her arms and legs stiffened up, we shouted for help and Boy took charge.  He swept her up in his arms and called for help. We thought she was choking on something, so he turned her upside down pounding her back to get out whatever she had swallowed.  A stranger grabbed me and brought me down another aisle and held my hands asking if I would pray with her.

By the time EMS arrived, she had regained color to her face and was fine, a little grumpy, but after all she had just been beaten on the back and turned upside down!  I rode with her to the hospital in the back of the ambulance. The doctors were at a loss for what had happened, until it happened again in the Emergency Room.  “OK, that’s a seizure, please wait in the hallway, we’ll take care of her”.  They quickly rushed us out and shut the door. Thus began the barrage of tests; spinal tap, Cat-Scan, blood work, MRI, EEG and various others. Five days later we were allowed to leave and we were told that she had probably suffered a febrile seizure and that it could happen again. Which it did, of course; Reality wouldn’t have had it any other way.

The doctors never said the word ‘Epilepsy’ to us and never mentioned that our daughter’s world was about to be turned upside-down and ours inside-out. They gave us the medications and hooked her up to machines but never told us “why” any of it was happening. They had the best intentions; after all, we weren’t the only parents they dealt with on a daily basis.  I’m sure they recognized the fear in our faces and the looks of anguish, but they were there to diagnose and treat our daughter, not to provide therapy for our depression, exhaustion, and confusion. Those things we would have to cope with on our own, just the two of us.

Lots of parents deal with this kind of stuff-right?  That’s what we told ourselves; and so we dressed her up in her Easter outfit and shared our little hospital stories with the family.  Everyone thought she looked beautiful despite everything she had gone through.  “She’ll be just fine, you wait and see, she’ll grow out of it and you’ll look back on this and laugh.  This happened to a friend of mine’s little girl and she never had another one.” They were just trying to console us, and we believed it-yep, she’ll grow out of it, it’s just a speed bump on the road to bliss. It will all be just fine. Boy, Girl and Baby would soon be on their way to happiness….

But, what we weren’t prepared for along the way were those horrifying seizures. They truly have a way of tearing your heart out each and every time.  There is never a way to get used to that look on your child’s face; “are they dying, are they breathing, when will it stop, oh my God please make it stop!”  For our precious Baby Girl, they just kept coming and our hearts kept breaking.  The convulsions and the medications were making our little girl literally crazy, and making us lose faith in ourselves and the world. What was happening and more importantly, Why?

Our baby was a mess, a little tornado spinning around non-stop.  She was up and running by the time she was ten months old.  We chased, we distracted, we ignored and we coped with all the wild behaviors and then we wondered, “is this normal, and if it is-why in the world do people have children?”  It was insane and we struggled to make it from one day to the next.  I was still working and Boy had finally graduated with that long-awaited degree.

Even though we both had college degrees, those big paychecks never came. It took the two of us working full-time just to make ends meet and that meant finding daycare. Anyone out there know what it feels like when three day care centers tell you they can’t keep your one year old because she was a threat to the staff and the other children?  It’s awful, it’s degrading, it’s humiliating, and it hurts!  We were just trying to get on with our lives and live out our dream, just trying to be a happy family, but Reality kept smacking us down reminding us that our destiny wasn’t to be what we had planned.  So, we temporarily consoled ourselves with the thought that maybe a higher power, maybe God, was at work and had a different dream for us, and we started to cling to that belief for sanity’s sake.

With the passage of time, many things were to change, and two older parents let go of the pain. 

Their child was different, her future unclear, these two wiser parents learned why they were here.

 God searched far and wide, took care who He’d chose, His angel needed love there was no time to lose.

 Two parents He found with courage and pride, He hoped they’d accept her through all kinds of times.

 For two special parents are all this angel needs, to show her the love to grow and succeed.

You know how the story goes…….Boy meets Girl and they fall in love. Pretty soon they start spending all their time together.  Things like studying and going to class just aren’t important anymore. Pretty soon, Boy asks Girl to marry him, after spending hours scratching off jewelry coupons to be able to afford a ring.  It’s pretty exciting when you’re 21, but thinking realistically doesn’t come naturally when you’re that age.  Instead Boy and Girl just knew that they’d have it all! They’d finish college, get great, high-paying jobs and be just fine!  Between the both of them working, they’d be millionaires!  They dreamed of traveling and seeing the world together, and someday, when they were ready, they’d start a family and they’d live happily-ever after. Of course, that’s how it goes in all the fairytales -doesn’t it?

But, in our fairytale, we weren’t both finished with college, we had no money, and a great job for me didn’t come even with that degree.  Yep, we struggled at first, like so many other young couples.  The apartment was small, the car was small and singular, and we lived tiny paycheck to tiny paycheck.  The real world wasn’t as fun as in our dreams but we were together and we were determined to make it work.  We knew the struggling wouldn’t last forever, everybody has that story when they first start out, you know.  Boy, looking back on it now, those days were EASY!

Maybe those days were “EASY” looking back on them, but like all good things, they didn’t last.  Yep, I’m pregnant………I’m sorry; I know we were going to wait, but stuff happens-right?  Boy tried to make me feel good by holding my hand and telling me everything was going to be alright.  He was wonderful, a rock, a shoulder to cry on and more importantly he was there for me.  “It won’t be easy, but we can do it together”, he would say.

And so, there it was…our first introduction to Reality.  A baby was coming, part of both of us, we may not be ready but that doesn’t matter, it is what it is.  What could have tore us apart, brought us closer together and when she came along that hot July day, we were in awe of every bit of her; her smiles, her giggles, her funny faces, her sounds and her smells.  It’s true what they say, that you’ll fall in love from the very first minute.  And despite the craziness of being new parents, we did our best and made it through the first few months without knowing any better. 

We made it through colic and constant crying, working two jobs and not sleeping. Boy was trying to finish school at night while staying home with our little one during the day. We were doing the best we could and paying most, well maybe just some, of our bills!  She was our little cutie-pie and we were a family, the three amigos! After surviving those first few months we started feeling a little optimism creep in and we innocently let ourselves think we could be happy. Yet, that wasn’t to be our destiny and instead Reality was back and this time it was there to remind us not to get too comfortable or have too much fun. It’s message was quick and harsh; “parenting isn’t an amusing little game or fairy tale; it’s real-life, real emotions, and for the two of you, it’s NOT happily-ever after!”

A baby is born on a hot summer day to two young parents just finding their way.

Their days passed quietly no problems they’d see and two thankful parents sat and rocked their baby. 

Then all of a sudden their baby took ill and two frightened parents sat quiet and still.

The doctors were careful to watch what they’d say and two tearful parents just held hands to pray.

Their lives took a tumble; their road took a turn and two troubled parents had new things to learn.

Their friends’ lives were easy with runny noses and colds but for two hardened parents life was not an easy road. 

Their days filled with medicines, their nights filled with tears, these two tired parents lost track of the  years.