Monday, November 26, 2012

Thankfulness, forgetfulness and more thankfulness

I have been sharing all the things I am grateful for during this month of thankfulness and it has been a real eye opening experience. Some days I struggled with what to give thanks for beyond God, my family and friends. I was able to do some stretching of course some days, but other days I didn't feel thankful for much. I know that sounds awful, but I spent part of this month grouchy. Moving sucks. I am not an organized person, but I 99% of the time know where I place my stuff, but moving has given me not even a 50% accuracy rate on finding things. And I am not talking about socks here, I have lost my debit card and had to get a new one which now requires me to renew everything I had linked to, which is a lot, and a $100 Lowes gift card. That guts me. We could really use that card and I am 50% sure it will show up again, but it kills me I lost it.
So to say I have felt frazzled this month would put it lightly. And it is nothing I want help with, I need to put my stuff where I want it to go therefore I am back to knowing where it is 99% of the time again.. I just am not finding the time with work, holidays, kids messing everything up before they are ever put in their appropriate place oh and the Christmas decorations we need to put up and gifts we need to buy. Oh and the passports we need to get. Sigh. Sigh. Ok so this is why I was scrambling from time to time to say I am thankful for the sun that so gloriously rises each and every morning and for the beautiful faces I get to see smiling at me each morning.
I lost track of what I was thankful for and this month each day, even when I didn't feel like it, I was forced (and by forced I mean I placed an expectation on myself and to all of facebook and Lord knows those are expectations you cannot deny!) to count my blessings. This has been the most eye opening and wonderful way to look at life. Am I normally happy and easy going, yes, totally! But I am also grouchy and get annoyed easily so this was the best exercise I could do for myself and shouldn't stop at December.
I started taking things that were annoying, like say framers outside our window this morning pounding away at 6 am and turned into gratefulness that we will soon have neighbors and not just neighbors, but ones with a 7 year old daughter that Andi already met and played with.
I got my eyebrows shaped for the first time in my life, back in my modeling days one dude went nuts on me and since then I have just been plucking the strays, anyway I got waxed and apparently had a reaction. My forehead was red with white heads all over it. It was atrocious! And I will admit my skin is and has always been my biggest vice. Again in my modeling days I would get reprimanded for it. My grandma would always ask me why I was broken out. Zits have put me in some real downer moments in my life and at nearly 34 they are still ever present. But this might have been the worst break out I have ever had. BUT as bothered as I was, I wasn't that bothered. I felt reminded that my self worth isn't in my beauty. I spent many years, young impressionable years, holding my self worth in how I looked and I am no longer that girl and it took that reaction to show me that yes I have broken out skin, but I am still a cool chick. A cool chick that could use a little make up, but none the less... a cool chick. At least I am to those that matter and that is all that matters.
And this morning Andi Jane disobeyed me with turning on TV before she was dressed for school. She got sassy and I had to walk away. As I was getting dressed I thought about all the years I had prayed God would make Lily throw me a temper tantrum. Something showing me she's in there and has a voice and it never happened. So I knew deep down that even though I was annoyed with my Andi Jane's choices and the way she was carrying herself, I was also thankful that she has a voice, that she has an opinion. So I went downstairs to her and held her hands and said Andi Jane, even when I am upset with your actions, I still love you and am thankful that God gave us you. Well she just hugged me harder than ever before and I could tell she was thankful for my forgiveness. Our morning went on so much better and I sent her to school knowing I am not going to set her day up for disaster.
I am not bragging because most mornings our days does not go off like that, I will yell and she will pout and I  send her to school mad and I feel awful all day. But today that didn't happen because my mind grasped the blessings I have and it changed our whole morning. It's changed my whole month. I am thankful for so many big things and yet so many little precious things that I just don't ever want to take for granted.
Like yesterday in the park. Lily couldn't ride her scooter there and play on the slides, but I was thankful that we just got to sit and hold hands.


Tuesday, November 20, 2012


There is never enough hours in a day nor money in the account, right? It sure seems this way. But I know we are blessed. So blessed. 
I have so much I want to share and write about, but my time is short. 
We are almost done moving. A few things left in the old place we have to gather and then we will finally get to work on the new place. It's been crazy. So much to do. So little time. 
The place is incredible though. Bus gets Lily, we walk Andi to school. Lily's room has so much room! She gets bathed and dressed in there and there is still room for her chair and other equipment. Her door doesn't get dinged because the wide doors and hallways are bigger than her chair. There is so much room and the kids aren't all in one room playing when Lily is resting. This move was so needed, but it was hard to do. 
So many memories in one place. Heights marked on the walls, memories all over the place. It is always bittersweet to be out with the old and in with the new. 
It seems like we are venturing into a new season of life. Baby stage is gone with Oliver and Lily is now 10.
Andi Jane is going to be Mary in our church play on December 15th and had her lines memorized the day she got the script. She wants a laptop for Christmas. The baby days are gone and my heart aches a little bit for what will be no more, but excitement also for the new memories we will make in this new home.
Andi Jane so badly wanted to be Mary and I told her she had to ask Ms. Ashley (play director) and she said "I already asked God" ... well sure enough a few names go into a basket and out comes Andi Jane's name to be Mary. That night in bed after we read the script she said "you know I got to be Mary because I asked God" I said "yup" and she said "I like that God, he's a good guy". Oh she fills me.
Lily got a Make A Wish! They called and asked if we had our passports, I said no and they said get them because we are going on a Disney Family Cruise to the Bahamas this summer!!! This is beyond thrilling because it is something our family would never be able to manage and now we get to do this. Lily will LOVE this! Warm water, warm sun. Everything she enjoys! We are so excited and have got to get our passports!
I feel I should elaborate on the whole Lily got a Make A Wish..... I would have never even asked for a M*A*W in the past but as Lily has gotten older it seems our battles are bigger that we are fighting. The biggest issue, which has always been, is her seizures. Lily has the worst type of epilepsy a person can have and when you have seizures that are not controlled no matter what you do you are given the worst odds with sudden unexpected death in epilepsy. Not something we like to discuss, not something I even dwell on. But it is a fact. And that fact was enough to qualify Lily for a Make a Wish. And with the growing Lily is doing we figure a vacation like this needs to be done much sooner than later. So that is how Lily qualified for Make a Wish and this is why we have decided to even request it and are using this opportunity to get a family vacation while Lily is still light enough for Andrew and I to still carry her. 
Our last neuro appointment didn't go as I was expecting so we are thinking of taking Lily to the Rett Clinic in Denver, CO to see Doctors who see several other CDKL5 kids. I don't even know if anything will change, but it would be nice to see someone who knows other kids with CDKL5. It would be nice to make a 5 year plan with Lily because we are coming up to some changes in her life physically and we need to make some plans. The scoli appointment and then neuro threw me for a loop and I think we just need to see some doctors who don't just say well she has Rett syndrome there isn't much more we can do. Every note Lily has says Rett, no one here knows anything about CDKL5. 
Anyway... I am going to try to keep up better on updates, I am soon getting a computer and and desk in my room!!! Maybe then I will post so often you'll know what color toe nail polish I am wearing! Ha! Like I polish my toes.

Friday, November 2, 2012

Update from Scoli Clinic

Unfortunately I heard what I knew I would hear.
Lily went from 23 degrees to 45.
We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.
Got rx to go back to wheelchair clinic, I called to schedule, but gal was out so I'll schedule that next week.
I just love this Dr. He is so wonderful and kind and caring.
He knew this was sad for me. Surgery is a definite, just not yet, but I'm sad. He said it is a neuro type of scoliosis and there isn't much to prevent it.
Her hip needs to be watched.
Her growing bigger is the enemy. This is so heart breaking on so many levels. We all say we don't want our kids to grow up, but when growing hinders the quality of your child's life, it is a whole different level.
I'd appreciate that pause button now.


The lump in my throat is big and invading. I have a lot to do right now. I have no time for tears. Action only. Cruise control set.

Oliver's tonsils are due to come out on Monday at 9am. He has been sick all week with yet again another acute case of tonsillitis. These things need to go and throw them away. He has been miserable all week and will be again all next week, but then I pray he will be better for good.

Oh and moving. Got the keys. Got the house. I should be happier, but
I will smile and pop the champagne when I am finally relaxing in the new place.


Keep us in your prayers please. I am stressed about a lot. I know I honor a good God and he will see us through all this, but the control freak in me is resisting his help.

Thanks friends for keeping up with us. Your comments mean so much to me, I love hearing I am not alone in this journey.

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