Wednesday, July 23, 2014

Regaining Focus!

OK can I just say being a mom is hard? Can I get an AMEN? We have to lift each other up, because I know so many of us are doing enough of knocking ourselves down. Cheers to all you mamas! You are AMAZING!
I just wanted to say we did have a weekend of family fun before school started. (Yes school started. July 21st. It was 111 degrees. Yay for year round school in Arizona) Although I will say 2 rooms next time, and maybe we will just take one kid at a time on vacation. Preferably Lily. I kid. I kid. I read last post. I totally kid. {but it would be more peaceful}
So we went on a little family staycation because Arizona Resorts know how to do a staycation!
We went to the JW Marriott at Desert Ridge and it was wonderful. We floated on the lazy river. We swam in the pools. We laid in lounge chairs. And although Lily had seizures (as always) we just let her sleep them off in the shade under cool towels. She really seemed at peace there and when she wasn't seizing or sleeping she was swimming and was so happy!
*Side note... we won a Kiefer float for her at conference (which I really wanted) and it was incredible for her all 3 times we took her swimming with it. Then we left it at the pool and never saw it again. But I am in contact with the resort who says they are doing all they can to search for it and if they can't find it they will buy us a new one! I'll keep you posted on that.*
The kids had such a wonderful time. Andi made a new friend, as always, Oliver just loved to swim and play catch. Andrew and I enjoyed an adult beverage and we took advantage of the kids eat free deal.
It really was like we were out of town. So fun.




Then school started. And sleeping in was over. Rushing had began. I knew it would be different with three now I had to get up and ready and really different because the past 5 years before Oliver seriously slept through it all. Andi pretty much gets herself ready and all I use to have to do was get Lily ready. Which is a lot of work as you can imagine as she is full care. But this year it was Lily's full care and pulling a sleepy Oliver out of bed and forcing a kid who doesn't like to eat breakfast to eat breakfast and get his sleepy head dressed and teeth brushed. And still full on getting Lily ready. The first day I was in tears and we waited outside for Lily's bus to come and then we were all going to walk the kids to school and I could see Oliver in his class... but Lily's bus didn't show in time and Andrew had to take them. I stood and cried and thought I am missing his first day of school. His first day of school! For the rest of his life he will never have his first official day of school again. And there I stood.. missing it. Proving once again they take second to Lily. Not wrong. But also not fair.

But here they were before

Oliver-Kindy, Lily-7th, Andi-4th

Second day someone was "sick" and didn't think he would make it to school. I called it second day jitters...

He's fine. Just dramatic.

Then I prayed the bus would make it in time. And when it didn't, I asked Andi Jane, "can you get him to school and to his class?" She said she has been waiting for this moment since we moved here. We live less than a block away and so there I stood and watched them as they left. Again.





So today dangit I was not going to miss them go again! So we all (Lily, Andi, Oliver, me) walked to school kissed those little nuggets goodbye and Lily and I walked back and then we still had 10 minutes of sitting and waiting {in peace} for the bus. I felt so much better. I knew that OK, this is our morning routine. We just need to get ready a little earlier and that is just how it will be. And we will really celebrate weekends.


Oh and just an Oliver update, he had a better 2nd day than first. He came home so happy to tell me about a book he made and even made a new friend with a "cool name". He is growing up so fast helping with chores around the house and even earning an allowance. He actually asks what else he can do to help. He voluntarily brought in the recycle bin on Tues. Bless his little heart! He seems a little more emotional than usual as last night after prayers he just sobbed like a drunken emotional sailor crying about everything from hoping none of his friends come over and ruin that book he made, to not being a "cool guy" to a very serious worry over a family friend (sweet Ellie Grace) who is battling cancer right now. We just said another prayer after he spilled all his worries onto me and then he slept like the little sweet prince he truly is.


Andi Jane is rocking 4th grade! Loves her teacher and the kids in her class. She asked me to put some Jamberry wraps on her and she was loving all the attention she was getting for her awesome nails! :) She has been helping me with Lily and Oliver and even pitching in with chores. Andi is not a chores person. So I am so glad she is finally realizing she needs to pitch in. Even if I had to make some incentives to get her to do so. She is a good girl and I can't believe she is in the 4th grade. Time really flies.


Jr. High is going much better than I anticipated! Teacher has called me everyday with updates and questions (asking questions is so good!) I have been informed how wonderful the paras are (from great sources) and look forward to meeting everyone on Monday when I go in to teach them about the Tobii. I had this overwhelming feeling of doom thinking of Jr. High, then I met the teacher, heard their are only 6 kids in the class and was told about the paras and I just felt relieved. I worry. A lot. And it seems like every time I do so God proves himself to me and says... SEE? We are always so covered by his love and peace. I am OK. I am feeling confident about this year.


So now I have three kids in school. Three lunches to pack. Three folders to check. Two I will need to reinforce homework with. And again... will really appreciate weekends.

Thursday, July 10, 2014

And Summer is Almost Over

Holy crap! I think I have whiplash. Is summer seriously almost over?
What?? Seems like here I am again coming here to update over summer starting.. at least I made it before Christmas.
I lay in bed and write the best blogs. Like seriously share worthy. Then I wake up and go to the computer and it is though I am grabbing those words, but I can only grasp a couple letters at a time and they never formulate like they did in my head.
It's been a good summer, but an almost over summer. Modified year round rocks all year, except for summer. I like them home and I am not kidding. There is no strict bedtime, no homework, and maybe it's impending doom of Jr. High that is shadowing me and my feelings, but I can't shake the melancholy. I feel like Oliver going into kindergarten is overshadowed by this awful sense of knowing ...Lily is going to Jr. High.
And once again I am reminded of how much our house/lives/world revolves around Lily. And it isn't bad. It isn't wrong. But sometime I realize, it isn't fair. But I also realize there isn't much I can do about it.
Since 2010 every summer has been focused on something for Lily. From conference to out of state clinic, to hospital stays, we spend our summers focus and money on CDKL5.
In Virginia on the last day of conference we sat in on the sibling panel and I cried. I was tired, yes, tears always overwhelm me when I am tired and also when I am PMSing, which I was also doing, but I think I would have been full of tears with lots of sleep and no extra hormones.
We stayed up and "socialized" every night in the hotel bar. Let me tell you, no one knows how to "socialize" like special needs parents. Can I get an Amen? We need it. So yes I was tired. But something struck me hard as I listened and laughed and cried at these kids who shared what it is like to have a sibling who doesn't speak, who acts differently, who has seizures, who (and most gut wrenching noted) may not always be around. My heart literally ached as I sat there. I thought of the lives our kids live and how not typical it is and how hard it can be. And I know the positives. I state them all the time, our kids are better for having Lily as their sister. But there are serious negatives as well. And they are real and they are ever present and they suck.
At conference I learned a lot, got a lot out of conference, we had a wonderful time, it was incredible meeting families and connecting and sharing and my heart was filled that long weekend, but it also broke. It broke over the connection we all had. It broke over sharing notes on seizures and wheelchairs and heart break. It broke over realizing the world we live in although so normal there among friends who understand, it is so not "normal" back at home. And there is a rawness of understanding the life our "typical" kids live.
Don't get me wrong, it absolutely was a time of hope and connection I can't put into words, but it was also a moment of conviction for my focus at home and a realization for my other kids who may be standing in a corner saying look at me. See me.
Although often it is a screaming over dramatized rendition of a stubbed toe, but tomato tomato. (you are supposed to read those differently, doesn't come across as well in writing).
The kids were great back at home with Grandma, our trips up north were cool, relaxing and filled with good times with great friends. And of course seizures never left our side... well except for when Lily was hooked up to an EEG for 30 hours. Oh then the seizures took a hike, but they were back when the cap came off. Seriously think there is something behind that. But we did get data without a big seizure. As it turns out and I really already knew this, but Lily has a mess of an EEG. Spikes all the time, has seizures that don't even look like seizures and this was all the while I would say she was having a wonderful day. I really wanted to see what her O2 and heart rate do during her big nasty seizures, but I guess it just wasn't meant to be. We will try another med to add to the list of many. And that's all that about that.
It's been a summer. Not too different from Christmas. A whir wind leaving me breathless and spinning. But also focused on claiming back my family. My focus and seriously.. and I mean it this time.. slow down mama. SLOW DOWN MAMA

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