Wednesday, May 28, 2008

Last Day of School

Lily had her last day of school today. I felt sad sending her off. How fast a school year goes. Wow.
We will surely miss her teacher.
Yesterday we were at the hospital for 5 hours! Darn this study. Ugh. She had an EKG, blood drawl, I had to sit her on the toilet for an hour the previous night for another urine sample, and an hour long EEG which really is more like two hours with putting on the leads and taking them off. I really needed to work yesterday and that did not happen. It was stressful.
The girls are going to Grandma and Grandpa D's tonight and they are leaving bright and early tomorrow morning to go up north to Greer while daddy and I am going to NYC! We leave at 7am and will be there until Monday night!
I miss the girls just thinking about missing them, but daddy and I need this.
I have more I'd like to say, but I have 20 minutes before I have to leave work for a 4pm appointment and I better do my work and not personal stuff at work, right???!!

Tuesday, May 20, 2008

"What Would Lily Say?"

So it happens. It happens when I am not expecting it. I really hate when it happens, but I also know that is what makes me "normal".
I get hit by the mack truck of "what if". Or what "should" be. I try to duck and cover from it, but sometimes, just out of the blue I am knocked on my ass.
Andi does this annoying thing where she asks us many times a day when our birthday is. She knows all our birthdays. Month and day. I wouldn't be surprised if she knew the year. She asks me my birthday and I say "February 4" and she says, "No December 19th" then she goes on to say that "Daddy's is February 26th". It is actually rather freakishly and I am not going as far as to call her smart because the child still can't pick out an A out of a line up. But she can tell you the minute my toe nail polish color changes and if my outfit is new.
Anyway, yesterday she was asking me the infamous, when is my birthday question, and I said it fast to get the conversation over with and I just thought for a second, what would Lily say at the 100th time she had to answer August 28th. What would be a reply of a 5 and a half year old responding to her annoying little sister be? And just as I thought that, I felt a dagger cut through me. Something as simple and a thought, a wonder, knocked me down.
I want to see Lily react to her sister. I want to see her tell her sister where to go with her questions. I want to see them bicker. I want to see them play. Sometimes I say and I do feel that we got the best of both worlds with both our girls, but sometimes I can't help but to selfishly want Lily to just snap out of it and act like she should. I love to cuddle her in the rocking chair, but what I wouldn't do for her to tell me that she doesn't want to sit in the chair with me. What I wouldn't do for her to want to play dress up with her sister. What I wouldn't do to see her not struggle with every single thing she tries to do that just comes to all of us so naturally.
Sigh.
I know all this wanting gets me nowhere and sets me back further than where I was just the day before, but what can I do? It is human nature to want normalcy. And not normalcy in what our family now considers normal.
This whole process of having a special needs child is so Paula Abdul circa mid 1980's "two steps forward, one step back".

Wednesday, May 14, 2008

Once again, a sad May

So there is a lot to update, but I really don't wanna. I am sticking out my tongue with my hands on my hips. I, my friends, am pouting.
Looking in Lily's back pack last week brought me from laughter to tears in about 2.6. First I read Lily's note in her folder and the note her teacher wrote made me laugh. She said, "Not at all interested in my world, but loved her world. She was laughing and singing". That made me laugh. So Lily. So Lily to be involved in herself entirely. Yes I know it screams autism, but whatever. I prefer it to scream LILY.
But then, hey what is this? It is an envelope with Andrew and my name on it. Humm... this looks professional, what is this? I saw the words "heavy heart" and mine started to race. Nothing is good that has to do with a heavy heart. I read that Lily's teacher, the one who has done the most amazing job with her, is leaving. It is a great opportunity for her. We are happy for her, she will be helping other children, she is an amazing person and we are glad for this year we had with her, but selfishly I cried. I cried, no. No. No. No.
No. Last year we had to leave preschool and the best home we have ever known and Mrs. Jean. Last May I cried daily on the days leading up to saying goodbye and when it finally happened I was an emotional wreck. But we moved on. We will always love Mrs. Jean and see her and maintain a relationship, but we had to move on. We had to move on to the scary land of public school. I had to send my baby to a big place with lots of kids and all new people. I cried.
But it has been a great experience. Lily's teacher has been so incredibly amazing. Lily gets to do things all the time. She is in a warm place with warm people all around her and I pray that even with losing her teacher, we will still have everyone else. I am praying, and praying that her new teacher will come in with a mission. That she will have fresh ideas and excited about her/his job. I pray it will be a good thing. I know when dealing with special kiddos and schools it is a crap shoot. You have to have the right teacher for your child to benefit and so far Lily has.
We are so sad to see Mrs. A go, but we have to say our prayers that this is all in the plan and someone new will know what they are doing and Lily will not miss out.
Arrgggghhh this was such a good year for her. Please, please, please let the next year be as great.
I'm still sad though. The last day of school is the 28th.

Study wise we are on our last two weeks! We go in on the 27th for our last long appointment. Then we get the medicine for real and we only go back monthly from now on. Unfortunately we still have to bring in urine every month, but what can you do? Praying once on this new med she'll improve seizure wise and not show ill effect on the med.

Pray, pray, pray.

Andrew and I am going to NYC in 2 weeks and one day! The girls are going to Greer with my parents and we are going on our first real vacation since we became parents! Woo HoO!

Tuesday, May 6, 2008

Sunday's with Lily

Lily is finally on the road to good health. She was refusing to eat all weekend and was just weak and tired. But today she woke up happy, ate her breakfast and was excited to get on the bus.
Sunday I finally made arrangements for her to attend Sunday School at our new church in her age group. We started a new church last November since ours closed down, but we had Lily sit with us the entire service. I am always nervous about sending Lily into a new place with new strangers. I'm not big on strangers. I am also not big on Lily in hands that I do not know. It is funny we just send Andi in on her way and trust things are safe, but with Lily it isn't so easy.
There are so many fears involved. Of course the major medical ones like a seizure. Or someone feeding her and she chokes. But it is the smaller things that I fear more. Will she just sit there all by herself? Will the kids whisper and giggle about her? Will her teacher be afraid of not knowing what to do with her and in return do nothing with her? Every parent wants their child to be accepted. To be happy. To feel safe. When you have a special child, those wants and fears are escalated.
I spoke with a woman on the phone prior to coming to church and she went above and beyond. She got Lily a helper who will be with Lily every week, who will make sure Lily is not in the corner. Will kids still stare, in the beginning I am sure they will, but with time Lily will be a member of their class and she will be what they know. She will bless them as much as they bless her.
Let me say when I picked her up from the class she was in a happy mood. She stayed in that mood the entire day! The teacher said she was happy the whole time. She was alert and enjoyed the class. I asked the teacher if she thinks it will work out weekly and she said, of course!
I feel relieved. As I am sure the rest of the congregation who has been listening to the high pitched singing of Lily in the middle of prayer! :)

Yesterday was therapy day and she is so funny. We start at hippo therapy at 7am. And that girl complains the entire time of grooming the horse, Ruby. She cries and cries and we always think, oh it will be one of those days, but no, then she just gets on Ruby and rides like a champ. All smiles. She looks so regal with her helmet and her proper posture. It is really pretty funny because Lily is so typical sometimes. She is just like all the other kids who don't want to work before play. She is just used to getting out of things when she cries so she may whine a little more, but she doesn't get out of it. And she won't. Our little drama Queen. Always has been always will be.

3 week count down for the study to end! Yeah!

Friday, May 2, 2008

Dear Daddy

Andrew's voice mail: I'm not here right now, leave a message

Kim: A couple things, first I need to know when you gave Lily that dose of clonopin last night, she is acting like a grumpy drunken sailor and I need to know when she will quit it. And secondly will you please refrain from teaching your 3 year old daughter expressions like "take a leak"? I really don't appreciate my three year old daughter telling me "oops, I just took a leak in my diaper."

sigh...

*Although Andi is potty trained, I am pretty sure she will be in high school and still need overnights*

Thursday, May 1, 2008

Update on the tummy bug

Lily hasn't vomited since 9pm last night. I think we are over the worst of it. She still has a low fever so I kept her home from school, but I am pretty sure she will be able to make it to school tomorrow for their field trip to the zoo.
Lily is though, a turkey! I got some breakfast in her. Just a little, I didn't want to overwhelm her, but I got some malt o meal in her and a yogurt smoothie. I knew she would have to pee and I still needed a urine sample from Tuesday's study appointment. Today was the last day to get it in, so I sat with her on the potty for 30 minutes, nothing. Then I thought if she were comfortable laying down maybe she would go. So I sat for 2 hours with her on the floor naked. I had a pad under her and wouldn't you know the minute she rolls onto her tummy she starts to pee. I flip her over fast, but it was too late. She peed on the absorbent mat. Now there was a dropper full size of pee on the plastic part of the mat and we poured it into the cup. I know it was hardly anything, but anything is better than nothing. But this is where I say she really is a turkey. After all that. I was pretty bummed considering I sat there for hours this morning and missed her pee, but then I put a diaper on her and she practically fills it within minutes of putting it on. See she is a turkey.
I sent Andrew on the 45 minutes drive to drop off the tiny bit of pee and to pick up her klonopin. I would be too embarrassed to show up with that little bit of pee.
Anyway, we got it in on time. Lily is on the mend and Mommy will get to go to Bunco tonight. Cheers!

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