अ मगिकल Time

I love Christmas! The magic, the beauty, the wonder of it all... I love that Lily is so excited for Santa and so excited about the snow! She was stomping in it making her feet print in our first snow and had this magical laughter about her. It was so contagious, so infectious and music to my ears. I realize how blessed I am to have her... The beauty she brings to our life is truly amazing! Through our struggles I must always remember we have eachother and the beauty of simple things in life that make life worth living. I want to relish in each moment, each second of every day. Life goes by so quickly, I don't want to miss a snowflake, a twinkle of an eye, a moment to say "I love you". I have been blessed with so many things and such beautiful children, I am the lucky one. To witness magical miracles in my daily life, I am in awe. Those little things, they don't really matter, they really don't. It's those things that come unexpectedly, those things that you did not try to control, those are the things that life and love are all about.....

So she has Down syndrome, ok that's fine
So she has ten fingers and ten toes
Thank God she is all mine

So they say some people may not want her
That is ok, I do
She is perfect in my eyes
I always knew

So she has Down syndrome, yes you are right
But, that does not change my love for her
She is my light...

So she has Down syndrome, I don't care
We choose to count are blessings
We see the miracles in the air

We see the sunrise in the morning and thank god we are together
We rub noses and share butterfly kisses
It doesn't really matter

We don't think about the things that will never be
We just believe we are blessed eternally

There is just not any moment,
I would change her for the world
She is my everything, my Lily
She is just my little girl....

My Hero...

So hard to believe we are now on a new journey.... Today was the first day of Kindergarten for Lily, almost surreal. I didn't cry at the school, but
t, started to well up while making her first lunch and packing it in the cute Tink lunchbox I picked out... She wanted the Spiderman lunchbox. I snuck back and got Tink, hopefully it won't be one of those things I regret doing later on. She seems to have gotten over it just fine now! I took her to school and they had the parents stay until they took them on a bus ride. She didn't really want to sit in the circle with the other children, so I sat with her. The teacher has a daily question and today it was "Are you excited for the first day of school?". She went around and asked everyone and Lily was 1 of 4 who said "no", I was expecting it! She had been so excited, but it was a big adjustment with alot of people and alot of strangers. I left when she went on the bus and through the bus window we signed to eachother "I love you" and kisses! So tough to leave today and let her begin this next journey. It feels so scary and helpless to send her out alone in the big world. A world that may not always embrace her the way I do.... But, I have to somehow let go of the fear so I can allow her to become whoever it is she wants to be. I don't want to see her get any bigger, I just want to keep her my little girl forever. Yet, time is not on my side. So, I pray that you will always be protected and safe when I cannot be there. My heart is so full of love for you that at times I feel it could explode when I look at you. I am so proud of you and you amaze me in every way. I love you baby girl, my sassy princess.... Thank you for being my daughter and teaching me all the things I would have never learned otherwise. My world is brighter and more colorful because of you. I love you, you are my hero....

Faith

Today it hit me.... With the Buddy Walk just around the corner and not having as many people able to join us as I had hoped, I realized how tough it is at times to do this thing alone. I have come to terms with Lily having Down syndrome for the most part. You know it's a process of acceptance and some days are easier than others. But, I was thinking about how important this walk is to me and how much it means to me today. I was feeling a little sad that I didn't have anyone to share that with. I know my family loves Lily and everything, but I don't know that anyone else besides another parent of a child with a disability could truly understand. I wanted this day to be as important to everyone as it is to me and I had to accept that it is not. That was truly tough. I understand this is my life and everyone else has their own life. I just felt sad that I did not have a partner who would have shared with me the meaning of what this day holds for me. I missed out on having that support from the beginning and I wished I could have had that. I will never know what it would have been like to go through all those emotions together. Having someone who could share Lily's life with me and get where I am coming from. Maybe it could happen still, I don't know. I am a strong woman and I will be okay. I was just hoping we were going to have a really big team and all the people we love and care about could have supported us. Tough to know the support system is not so big. I am a strong woman, I have to accept this and realize it's okay, I can get through this and I will. I can shed a tear and wipe it off and get back up again and show the world it doesn't matter. A team of 2 or 4 or 6 will be all we need and someday I won't walk alone. I have faith.....

My daughter's voice...

Today was the big day! The big transition to K IEP. Our first big transition and my first ever IEP that I had to disagree and fight for Lily and what was in her best interest. Well, I guess fight is probably not the best word for I truly had no idea if they had any intention of fighting my requests. But, I did have a darned good feeling they were not going to be too thrilled of me asking them to override the lottery for the case of high educational need. I felt empowered this morning and was feeling more confident than ever. I knew I would get something that would be more than a half day for her. I knew a half day would never be enough to give her the best start. I had taken all of the advice from many friends who had been down this road and felt I had a pretty powerful letter in hand. In addition, I had my letter from her Pediatrician who is well known in MI and a Harvard grad. I was sure she was more educated than anybody there. Not discounting anyone who was there because I truly like everyone who is on Lily's team. But, it empowered me to feel like between the two they could not argue any point on either letter.

This is the longest IEP I have ever attended thus far - 2 1/2 hours long! I had forewarned her teacher of my intention of requesting a full day for Lily. So, of course everyone had the heads up! There were 10 people there not including myself. The Special Ed Director directed the IEP and we went through all of her goals, where she is at now, new goals for K, etc.... You all know the routine. I agreed with everything they all had to say. Like I said she has an amazing team and the only thing I was protesting was the fact that half day K was not enough and not in her best interest. After everyone was done the Special Ed director kind of jokingly mentioned the elephant in the room - meaning what I was getting ready to request. But, he was funny about it and meant no disrespect towards me. He even mentioned how maybe I could go back and put in some good words with my higher ups. I told him sure as soon as I got back I would be sure to call Governor Granholm up and tell her about how amazing our district is! It definitely does not hurt for anyone to know I am a Parent Rep who does outreach and advocacy for the state! No matter who I do or don't know it's always good to have that on my side. And for the record, no I don't know the Governor although I do get emails from her on occasion! And I did just meet Janet O..., but that is neither here nor there just me rambling. So, I said yes I am requesting full day kindergarten for Lily as I believe it is in her best interest. Then I pulled out my 10 copies of my letter with the letter from the Ped on the back and let them all read it. I even joked with them saying a few of my friends in the disability community told me that you might not really care at all what her Pediatrician has to say and maybe you won't. BUT, she is the Professor of blah blah blah at the college of med at blah blah and has done extensive research on developmental delays in addition to being very well known in the state and very well respected. It turns out a few of the people there knew her and agreed!

I don't know if the letter I wrote or the letter her Ped wrote truly helped. I am not saying it hurt because it didn't. What I am saying though is that it was not the letters that got their attention - it was my knowledge of my rights, my knowledge of what was in Lily's best interest, my willingness to be open to what they had to say, my willingness to not settle for less than she deserved, my willingness to be a part of the team and ultimately????? My knowledge - I was empowered! They knew I knew what I was saying and there was not a doubt I would fight if I had to. I knew they were going to offer me something - I really did not believe it would be to bump someone off full day and give it to Lily. And truthfully, it was not a full day I was fighting for - I did not need Lily to be in a full day just for the sake of having a full day. I needed her to be in the best program that would give her the best start, that would give her the time she needed to progress, to learn, to be included, to have one on one, to have access to the extra programs, etc.

What they proposed is that Lily attend half day K as was originally planned, but then in the afternoon would go to her Spec Ed Prek that she is in now... Lily's prek class is moving back to the K next year and so she will be in the same school all day. She will eat lunch with her peers and have recess with her peers. Her therapists will only do pull outs when she is in her Pre K class in the afternoon unless absolutely unavoidable. But, mainly they like to do push ins where they are with Lily in the K room. She will have access to the special ed teacher at the K in morning K as well as afternoon class. She works directly in the classroom. She will have the afternoon to work on anything that she needs some more time on or more one on one. The afternoon class is much smaller and that will allow her some down time. Sometimes Lily is happiest in smaller crowds and playing by herself. I am very happy with this offer and actually feel this is an even better option for her... I did not give them my answer yet, but I am 99% sure I am going to sign. I felt great about everything and achieved what I set out to do which was getting what Lily deserved and what would be in her best interest. I was happy they were willing to work with us (although I wasn't giving them a choice). I did ask so if I want her in full day is it an automatic no? And (I think they cringed....lol) and they said well you would have to take it to the superintendent and I said of course. I said I don't really have the desire to fight anybody, but I will fight for what is in Lily's best interest.... The special ed dir kind of smiled and looked at me and said I can already tell I wouldn't want to go head to head with you! haha! I said you are right, you wouldn't!!! Everyone got a good laugh! And then he said I suppose you aren't planning on signing this (IEP) today??? And I said nope not at all! He said yes that's what I thought! But, it was all in a fun manner and I left feeling like I made it!

I made it through the first of what will probably be many many struggles to fight for what my daughter deserves. And you know what that God is surely a funny man I tell you! Hmmmmm all of the things I have had to endure up to this point made a little bit of sense... When I was wondering and crying why me God why do I have to go through this? All of my past adversities and things I had to fight for, people who tried to knock me down, all the while beating me down, all of my low points when I truly never knew how I would get through another day.... Well, it made me strong enough to be the person I am today - to be my daughter's voice in a society that forces me to fight for what she deserves. It's ok God - I am up for the battle!

Bummed.....

Some of you may have read my post last week on FB about Lily going to kindergarten and my hopes for her to get an all day placement. I was excited last week when her IEP invitation came home last week and a teacher who I have heard lots of compliments about was on there as an attendee. I assumed that meant it would be her teacher and was excited since I have heard great things and being new here, I don't know anything about any of the teachers. Well, that excitement quickly turned to disappointment when I found out that teacher was strictly a half day teacher.

After talking to many of my T21 online friends I realized they could not just place Lily in half day unless of course the full day went to a lottery. Well, I called Lily's preschool teacher Friday morning and found out that no it had not been decided who her teacher would be at that point. The one teacher was to be there as a body from the K and she was the one picked. So, I explained to Lily's prek teacher that I had put in for Lily to get a full day of K with all of my reasons behind it. She at first seemed a little surprised, but after hearing me said well I will definitely let Principal C know and I think you have valid reasons.

Well, today I checked my Saturday mail and found out that the full day went to a lottery and Lily was not chosen. I am so bummed out! I know it would have benefited her so very much having music therapy, art, gym and all the extra fun stuff she won't get to do on just the half day... Although I am sure it is all legit, part of me will wonder now if Lily and all her friends end up in Ms. P's class. Seeing as they hire a special ed teacher who works in the classroom and I know they have only mentioned one - it makes me wonder if they will all be stuck in the same classroom. And then I will have to wonder what kind of lottery put them all together. Just me probably being a bummed out paranoid mom. But, I just was so hoping she would get the full day.

Oh, the joys of parenting and wanting the best for our children. I am starting to feel like offering both half and full days at one school with a lottery determining it is not the fairest way to go. Maybe it would be fair if they put all of the kids both half and full day in the lottery. Just me thinking.... Oh well, such is life! I haven't won the lottery yet, what makes this any different!

Lily is touring Kindergarten!

Tomorrow Lily and her classmates who are graduating get to go on a field trip to the kindergarten! They will be met by peers who are in kindergarten now who will show them the ropes and show them around! I just found out that the teacher who everyone recommended to me will be Lily's K teacher next year! I am soooooooo excited! I am so hopeful about Lily's future and so happy that God placed us here in DeWitt at the last minute possible! That God sure does have a sense of humor always putting me in his place at the last second possible! Wondering if my dad has any influence on the big man up there, because that would be my dad's sense of humor! Anyway, I am thankful! So thankful for Lily, for Dustin, for my family, for my life and am so very hopeful. Life is truly a great place!

Many many prayers still said for the George family. This has hit harder for home for me than anyone and my heart still breaks for them. Prayers Joanie, Paul and family. No words can express how sorry all of us in the T21 community are feeling for your loss. May God be with you.

Life is so fragile.... I will cherish the life I have and the people who are in it. I pray God will always help me to hold this truth!

Bless you all~

Holding my little girl ever so tightly....

Seems there have been so many deaths around me this year.... And sadly a little girl whom I did not know, but who had Down syndrome like Lily, passed very unexectedly, very suddenly. Although I don't know the family, my heart still breaks for them. I held Lily more than I already normally do - which believe me is ALOT! But, sometimes we wake up and realize that we don't get to choose our time and life holds no guarantees for any of us. I worry all the time about me leaving Lily here way too soon and I know I can't worry about things like that for I will never get to fully live. But, I pray to God everyday to let me and Lily have a long life together. I am sure that is what everyone wants I know. I guess all I can do is enjoy every second of every day and make the most of it. Just sometimes when you hear of so many things that just don't make sense - like an 8 year old dying, like my mom who has stage IV cancer breaking her arm while trying to caregive for my brother who has MS and is wheelchair bound and getting worse - sometimes I want to know why is life so unfair????? I have faith and I believe in God, but I want to know that the people who deserve the good things will get them - not too much to ask for....

I hope that I can blog more..... Lily is getting ready to transition to Kindergarten and I can't believe it. So much to write about.... But, for now..... May God be with the family who lost their beautiful little girl who was so full of life and had the brighteset smile in the world....

May you rest in peace sweet Carly! I pray for your strength for your family as they grieve for you.... No words can express the sadness that is felt all over by such a tragic loss. Please keep this family in your prayers!