Thursday, October 18, 2007

August 11, 2006

Josh woke up and went to work like any other day. KayTar and I had to wake earlier than usual, because BubTar had spent the night at his grandmother's house and we had to pick him up. I loaded her into the car, sleepy-eyed and pajama clad to meet my mother-in-law at her place of employment for the BubTar hand off. She seemed fine. Sleepy, of course, but fine. We went in the school building, gathered BubTar and his things and headed off for home.

Once we got home, I plopped her on the living room floor and went to make BubTar breakfast. When I came back in the living room, she was behaving strangely. She couldn't seem to pick her head up off the floor. Her eyes were closed, but she was clearly awake. She wouldn't respond to me. I picked her up and she was a dead weight. She tried to open her eyes, but they just rolled back. Her head was stuck in a sideways position. She didn't look right. She started vomiting. I called our new pediatrician and said, "I think she might be having a seizure, but I'm not sure." She said to come in. I called my mom and she came over to ride in the backseat with KayTar. We dropped BubTar at work with Josh. By the time we got to the pediatrician's she was sleeping heavily.

As I was signing in, the receptionist said, "We have a room waiting, you can go right back." The pediatrician came in immediately and looked her over and sent us to the hospital. The exam sheet from that day said, "Developmental delay, dysmorphic features, new onset seizures. To Children's Hospital." Off we went. The pediatrician called ahead and we were immediately put in a room. The resident came in and took her history. There were so many questions. I answered the best of my ability, but I had no idea how to know what details were important enough to be included.

I was supposed to be getting ready to go on a beach vacation with my parents and instead, I were sitting in a hospital room, my world upside down. My dad came by on the way home from work. I told him it was fine to take my mom home, since she had no car and asked if they would pick BubTar up from Josh at work and keep him until we were released. I told them to go ahead and get ready for the vacation, if nothing else they could take BubTar and let him enjoy it. While both my parents were there, I left the room long enough to use the bathroom and get cash from the ATM. I had to walk across the indoor bridge to get to the ATM, and I remember passing the chapel. I thought, "How long will we be here? Is this somehow the beginning of the end? Will I be in there praying for her one day?" I remember passing sick kids and wondering if that would be us. I remember my eyes filling with tears and walking briskly to the bathroom to compose myself. I remember being afraid. We'd been to the emergency room before, for pneumonia and RSV, but I'd never felt like it was a preview to the rest of my life. I had always known we would go home and life would be normal again. I didn't know that anymore. It had only been weeks since we had seen the pediatrician and found out things weren't right, and now here I was, standing in the hospital hallway and I didn't know if anything would ever be right again.

Once everyone left, another doctor came in and asked the same questions that the resident had. I remember discussing Blue's Clues with him, although for the life of me I can't remember the context. He was a Steve fan. I liked that about him. After he left, KayTar finally started to rouse and about that time a horde of doctors descended upon us. I have never, to this day, seen so many doctors in one place. There were at least ten, maybe closer to fifteen. I felt so small and overwhelmed. There were even more questions, there were white coats and notepads, stethoscopes and sympathetic smiles. KayTar colored happily while I spoke with the doctors, effectively ignoring them. She used to ignore everyone. They did a cursory neurological evaluation and asked more questions. And more questions. Finally he recommended an EEG and gave me his card. He said he needed to see her in clinic. He also told me she needed to see a developmental psychologist for a full evaluation and gave me another card. I woke up that day with only a pediatrician. Six hours later, I had a neurologist and developmental psychologist and I had met more doctors in two hours than I had ever seen in my life. As they were leaving, two of the female doctors who had been whispering among themselves hung back. One said, "Those markers, they don't write on anything but the paper! How cool. Can I try it?" I said, "Sure, and she scribbled in KayTar's magic book. She whispered, "Wow." and giggled. I giggled, too. It was the most normal I had felt all day.



My sister came by to keep me company a bit later. She went down to the EEG lab with us. KayTar did not care for the EEG much. I had to told her down while they put the electrodes on. Then I had to lay with her in the dark, willing her to sleep after she had just taken a post-episode nap that lasted for hours. It was so stressful and as soon as she was asleep, I had to wake her again. Neither of us were happy. I was so emotionally exhausted, I could feel it in my bones.



We went back to the room to wait for results. Josh arrived sometime after the EEG was done, he had a migraine. He came in and slumped over in a chair. Before my sister left, I ran to get McDonald's from the hospital restaurant. I hadn't eaten all day. And then we waited. And waited. Finally, the resident came in and was about to explain the results when our room phone rang. It was our pediatrician. She had already spoken to the hospital and was calling to give us the very results the resident was there to give. She was so on top of things that she had beat the hospital staff to the punch. It was one of several times that day that I was reminded that we were in very, very good hands. Eventually we were released and I sank into bed that night more tired than I had ever been in my life. The next day we did meet my parents for the remainder of the vacation.



But that day, that trip to the hospital, it was the beginning. That was the day this crazy journey of ours started. The day that it really sunk in that this life, KayTar's life, our life, was different. We already knew that things were not at they should be, but this was the day when the rubber hit the road. The first time that our feet were firmly on this new path. This was the first time I looked out at the rest of my life and saw nothing but the unknown. This was the day that changed me. When I walked into the hospital that day, I knew I was a parent, but when I left, for the first time I truly understood what that meant.

This is my day late, dollar short submission for yesterday's Hump Day Hmmm. The subject was "The Journey" so I couldn't resist, even if it meant being a little late. Click the link to check out the other submissions.

26 comments:

Nancy said...

Wow, what a trying day. Thanks for the reminder of how quickly things can change -- and how we never should take those peaceful moments for granted.

I am glad you have such a wonderful advocate in the pediatrician. I am sure that helps you feel better about all the unknowns you face.

Hetha said...

This post has me fighting back tears. Obviously, it hits close to home and brings back some memories for me, but I hadn't really looked back on those moments with such clarity, until now. It's hard stuff my friend, but you've assembled an amazing team for Kaytar.

Julie Pippert said...

Oh Kyla. That moment when you walked past the chapel and began wondering? Oh all choked up here.

What a journey it has been.

(HUGS)

Julie
Using My Words

Becca said...

Oh gosh, I can't imagine how terrifying that must have been. I am so sorry. I am glad you are in a more hopeful place now.

Beck said...

It's hard to think about the day before that, when life was just normal.
And life is better now, which is a blessing.

nomotherearth said...

What a long trip it's been for you. I am constantly amazed by your fortitude. I hope the end of the journey is nearing - with nothing but sunny skies in sight.

laundrylessons said...

You really have been on the journey. I'm so glad your road has recently been leading you to a happier place.

Janet said...

What a gripping post. Your last sentence rings so true in my ears. I hate the medical mysteries and the way the hospital and specialists can make you feel so small and vulnerable. We can rise up to the challenge, though, can't we? You prove that it's true.

Katie said...

"but I'd never felt like it was a preview to the rest of my life"

That line really struck a chord with me. Sometimes I think that is why I get so angry over mine own sweet child, I want to know where our preview was...when did we become the parents to sick kids?

Sarah said...

I know the feeling of your world turining upside down.

Aliki2006 said...

What an awful day, and you remember it so vividly, and so poignantly.

I hope your journey will reach an end soon, and that memories of that day will fade.

Junie's Blog said...

wow . . . so that's how it all started. What a crazy, scary day. The day to end all days . . .

Catherine said...

Oh wow, wow, wow. I'm almost crying. Just before I got to the end of your post I thought - wow. That is what being a parent is about, and you never realize it until you get there.

And there it was.

catherine

slouching mom said...

What a story.

Truly a life-changing experience.

Lisa b said...

Oh Kyla what a journey it is. I know how some of this feels and you have captured it so well here. It seems so frightening to read and yet I know you have come through this all stronger.

on another note - I tried riessen today. you are a goddess of snacks.

flutter said...

Oh Kyla I am just tearful at this. I just want to gather you up and make this stop.

Oh your sweet girl.

jen said...

you are SUCH a mother. such a lovely, wonderful mother.

cinnamon gurl said...

Oh, that moment walking by the chapel totally got me. what a great post, and such a journey... you're seriously amazing, all four of you.

carrie said...

Wow, Kyla.

I am in awe of your strength.

Your courage.

Your beauty.

Your grace.

And you are passing all of that on to your lovely daughter. Every day.

motherbumper said...

I'm glad you couldn't resist writing about The Journey. I wish I could isolate those days that seem to branch a new path, but they often are a blur in my mind. Thank you for sharing yours - I feel like we've been back-seat passengers for some of it.

Christine said...

what a beginning to quite a journey.

and that scene by the chapel. wow, so scary!

i am glad we are here to walk with you down this path. . .

Kellan said...

This was a beautiful post - Kaytar is a beautiful child and she is obviously very lucky to have you as her Mom.

Oh, The Joys said...

Oh, Kyla! You are the bravest soul of all.

Amy said...

It is so amazing that one day can change your life forever. One day.

This has been such a journey for you and your sweet Kaytar.

I really hope yall are going to be dancing that new song in the very near future.

**HUGS**

kittenpie said...

I am all chokey and teary here, thinking of how terrifying and lonely and helpless a day like that would make you feel, and I ache for you, Kyla, because no one should have a day like that, and because I wish I could be there to wrap you in a big hug.

Julie said...

Kyla, what a wonderful writer you are. You really have a gift. And you document Kaytar's Journey in such a compelling manner as to create people like me who must check in daily.