Today was Charlotte’s 1st Birthday party.
Date: July 20th
Time: 2:30- 4:30
Charlotte was not present for the 1st 2hours. ….
I planned C’s party to a T! I knew exactly how many guests I
had invited, how much food to prepare, how many treats I would need; the whole
9 yards. The party went off as a success. If I had to change one thing, I would
have had a few more chairs. Other than the chair issue, all of the kids had a
great time. The water slide was a big hit. Kids literally slid down that slide for
half of the day. The other big hit was the snow cones. I just barely had enough
flavor syrup for all of the snow cones that were made. People stuck around
until the very end, just because they wanted to. Pretty cool. Nearly every hamburger and hotdog was eaten,
and most of the cake and treats were gone too.
The neighborhood kids showed up, and we collected over 75 stuffed
animals for the children’s hospital. $180 was collected for the FedEx
hospitality house along with a big sack of snacks. The confections were
awesome, and I even hired a professional photographer to come and take candid
photos of the party. From all outside appearances, the party was a fun success
and our guests were having a great time. Go team Dalton! The kids had so much
fun on the water slide and eating snow cones, while the parents raved on how
excellent the cake and food was. It seemed perfect.
On the inside, we
were one seizure event away from a disaster.
About an hour before the party, Charlotte had spotted me
getting things together. She noticed Case and I working outside to get the
slip-n-slide, kiddie pools, and blow up water slide, together for the party.
She wanted desperately to be a part of the action. She whined and cried all
morning until I finally relented and stuck her in her swim diapers and plopped
her in a kiddie pool, a full hour before guests were to arrive. I sat beside of
her in a rocking chair to supervise her; being that helicopter parent. While
things have been going great for the past 2.5mo, I didn’t want to risk today
being the day she had a big one. So beside of her I sat as she happily splashed
in the kiddie pool. She was happy and content for a few minutes, and then she
started acting odd. She would just stare off, expressionless. She jerked a
little, and she kept dropping her head down to her chest. It took me a few
minutes of this behavior to realize that something wasn’t right. I picked her
up and although she was super mad that I had plucked her from her pool that she
was having fun in, I could feel her having myoclonic jerks at about one every
2-5 seconds. I assumed she was just tired, and since I was about 30mins late
with her meds, I wrote it off as a fluke. Late with her meds and tired, that
sounds like a good excuse. No sooner had I got her settled in her pack-n-play asleep,
guests began to arrive. I told everyone she was napping and everyone was so patient
and kind. I didn’t tell anyone any details. “She had missed her nap time and
had JUST fell asleep. She slept for an hour this morning about 10am, so I bet
she will be back up any moment now.” I strategically planned our party time
just to avoid running into nap time. I went in to check on her several times.
My mom was lying on my bed watching her sleep and to make sure she didn’t have
a nocturnal seizure. An hour passed, she wasn’t just sleeping, she was snoring!
About 3:45, guests had to start leaving. I was so frazzled from that morning activities,
and trying to monitor Charlotte while entertaining the guests that I had
TOTALLY forgot to cut the cake.
Traditionally, we would have cut the cake after
C had eaten her cake, but what do you do when guests are leaving and the guest
of honor isn’t there? I cut the cake and began passing out slices. I went
outside and started treating kids with snow cones. The Kids were having a BLAST
playing on the waterslide and eating snowcones. Our friends and family were so
nice and polite, waiting patiently and making small talk while we waited for
Charlotte. Finally, 2 hours after Charlotte had fell asleep, she woke.
When I
saw her for the first time, I had sugar plum day dreams of her being excited to
see me and ready for whatever party activities we could fit in, in the last
30mins of the party. I was hoping that the last few standing guests would get
to experience the wonderful, intelligent, pleasant little person that my
daughter is. After all, part of the reason for throwing the big shin dig was
for people that hadn’t seen Charlotte in a long time, could see how well she is
doing despite her epilepsy. I wanted our family to see the Charlotte that I get
to experiance every day. I wanted everyone to get to experience her amazing
little personality and look past her health problems. Within the first few seconds of seeing my
baby, I could sense that she wasn’t happy about being awake. All of my sugar
plum dreams were shattered. Charlotte was NOT happy and that is a
understatement. I tried everything to make her happy. I gave her a bottle, fed
her, put her down to play with her toys. All she wanted to do was for me to
hold her. Even when family and friends would come up to talk to her, she would
just turn and look away. She never smiled for the camera. No matter how much I tried
to please her, she just whined and cried the entire rest of the party. She was
not the beaming example I was hoping she would be. In a desperate attempt to
make Charlotte happy, I resorted to the kiddie pool. Despite our earlier
problems, I was hopeful that after a 2hr nap, and all of her medications being
current, she would be able to enjoy her pool in the shade with the other
children. I took her back outside. After about 5mins in the kiddie pool, she
began having seizures again. This time when I picked her up, her myoclonic
jerks were much stronger than before, and more frequent. I swaddled her in a
towel and rushed her to her room, expecting a generalized seizure. I changed
her out of her swim diaper, and my parents came back into her room with me. She
talked to us and played a little. My dad tried to calm her down by reading to
her. She had several myoclonic clusters that were very strong. I told my
parents that it is only a matter of time before she has a big seizure, if I don’t
do something. I went and made her a bottle and gave her some of her liquid
Valium that I have to prevent a general seizure. It worked. About an hour later
I had a clam happy baby with no jerks. She was a little stumbly and loopy, but
content and enjoying having us with her and play with her.
By the time she had
calmed down, the last guests had left.
Case and I were left feeling exhausted. He and I were both a bundle of
nerves expecting her to have a seizure all day after the events earlier in the
day. We were completely spent.
We still are not exactly sure what caused her smaller
seizures the day of her party. We recently figured out that blue pools are bad,
so even though we had her kiddie pool in the shade, it still could have been a
trigger. Case swears he is getting sick and that Charlotte is too; and that was
the cause. Other than being clingy and needy, she isn’t acting sick. Some of my
other family claimed that the party was just too much and having so many new
things and people in her house was just more than she could handle. Possible,
but she was having problems that morning before anyone arrived. My parents
claim that she has just grown so much, that she has out grown her dosage. Her
current medication dose was supposed to work for her up to 30lbs. She is only
23lbs now. Someone also mentioned her teething. I think that everyone would love to point to a
cause or reason, but I am starting to believe that sometimes, there just isn’t
one.
My heart was completely broken. Epilepsy took my daughter’s 1st
Birthday party away from her, and there was nothing I could do to stop it. All
I could do was hold her. She never ate her cake, and we still have wrapped
presents sitting in our living room. She couldn’t even enjoy sitting in her
little pool. I am thrilled all of our guests had a great time, but the one
person that I wanted to have more fun than anyone was asleep for the entire
party. While I was hoping my daughter would be a shining example of normal for
all of her friends to see, instead Case and I got a hard reminder about the
long road we have hoed in the past year. Every seizure incident flashed before
my eyes yesterday as I held her jerking in my arms, away from the other kids
and family. My heart sank. This is only the beginning of her being isolated
from other children because of her seizures. It feels horrible.
Lessons learned- no matter how much planning, I can plan on
expecting the unexpected. After several weeks of being incident free, I get a
big reminder that my little girl is still battling this and how important it is
to keep her on her diet and medication. If a baby has “stranger danger”, don’t subject
them to a room FULL of strangers. Even though I HATE giving my baby girl doses
of Valium, it works. We avoided an ambulance ride and stay at the ER yesterday
because of her medications. At least we avoided "the big one", for now....
Happy Birthday Charlotte, I am sorry your birthday didn’t go
as well as expected. Mommy and Daddy love you no matter what.
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