Tuesday, February 26, 2013

Happy Birthday Mr. Husband

Today is my husband’s 31st birthday! He is 31! I remember I couldn't wait for him to join me in my 30’s, it would make us feel like we weren't as far apart in age if we were both in our 30’s, but who was I kidding, age is just a number… after this life we've lived together we must be really somewhere in our 50’s.

I remember his 19th birthday, I bought him a skateboard.

I remember being mad at him on his 21st birthday because he bought… no he financed a little motorcycle.

I remember his 23rd we had a huge bash at our house for him. Lily had just had her brain surgery a few weeks earlier and Andi Jane was a few weeks of officially joining us in our family. We thought a party was much needed.

I remember a huge surprise 25th party for him; I had it at my parent’s and totally surprised him. (I think actually disappointed him; he thought he was going out for a steak dinner)

I remember my bitterness ruining his 29th birthday.

I remember doing my best to make his 30th his best day yet.

And today he is 31. From 19 to 31.. wow.. I like to joke I had more tattoos than him when we first met. Oh it seems like worlds away. We met and fell in love in moments. It was the fastest relationship I had ever not only had, but seen. We jumped into everything and it could have ended just as easily.

I am so glad we decided together to do this thing. Together to change. Together to live.

I am a lucky woman today. I am a happy woman today. I am married to the man I need and am better for it.

Today we will celebrate yet another year of his life. Another year we have grown and another year we have rocked it.

I love you Andrew Steven, you are an awesome guy and I know this next year will continue to rock because we know who to trust in and let drive this ship of life.

Tuesday, February 19, 2013

Speak to me

You ask me what do I crave the most from Lily and I will tell you it is her voice. Words. Humor. Stories. Her take on situations. Her story, her day coming from her lips.
I have always said and will continue to say that CDKL5 robbed the most important part of human interaction from her and I will always carry bitterness towards a stupid tiny deletion that took away the thing that makes us who we are.
When you describe a friend of yours where do you get your impression of them? Their style, maybe a little, their looks, yea, but how do you know the kind of person they are? It's their voice. It is the words they say, how loud or quiet they are. The things they say about others. The big grand stories they like to tell, or the stories they never can quite tell right. Their words may tell if they are funny, or smart, clever or tough. The words we speak are how people either relate to each other, or frankly don't like each other.
Words fill this world. And if you can't hear them then there is a language you can speak with your hands. Options aren't taken away when you don't have a voice, but you do have your hands.
But when you don't have your voice, or your hands, you are kind of stuck. You are dependent upon others for everything. And not just that, you never get understood. Not the way the rest of us are. Lily is sweet. She is sweet because she is quiet and likes to cuddle. But what if there is so much more that we never get to know. I imagine she is hilarious, just like her brother and sister. Why wouldn't she be? Humor is the fuel in our family, why wouldn't she be able to tell a joke? I bet Andi can bug her as much as Oli bugs Andi but she can't say so. What if she wants to say stop it to her siblings and can't. She just has to deal with them running around her being crazy.
I think there got a point where I stopped hoping we'd hear words from her. I stopped letting myself believe I'd hear her say "I love you mama" because when the day doesn't come it just hurts more. We've gone through the heart break with thinking we found the answer for seizure control and every time it never works we are broken. And to hope for words and to never get them is even more damaging to us than seizure control I think. Because words would change everything.
So yesterday we had an appointment with a communication eval team. I was in knots over this. I knew this could change everything, or it could keep everything exactly the same. I was cautious to pray for a miracle because I didn't want to be angry, even for a moment, with God if that was not a miracle we would be given. But I asked others to pray big for us. And I did pray big too. I cautiously prayed big for something to help Lily communicate with us and prayed to be gentle with me and my mama heart. But God came through big time on this prayer requested lifted up by some amazing people in our lives.
Appointment was at 4pm. A hit or miss time with her. But they came and she was wide awake. They put in front of her a computer screen called an eye gaze and she immediately looked right at the screen. The positioning was tough to get at first, Lily also has a visual impairment called CVI caused by the brain, not her eyes AND Lily got an awesome astigmatism just like her mama so seeing well, Lily does not. She had her glasses on and was right up in front of the screen, we moved it right to a perfect position for her and they put a cause and effect game up for her and she started popping balloons with her eyes. It was funny because it made her get all excited and wiggly. Then we started with the two choices and brought out juice. Well back up she asked for water, but I don't think she knew what the picture was exactly but she looked and it said water so I gave her water and she cried. (Lily, spoiled Lily, doesn't like water) so then we got it to a place where she could ask for juice or a to eat. She asked for juice, got her juice and was happy. Then we moved where the juice button was on the screen to make sure she wasn't just looking in that direction and she chose  the juice again. Then we added eat and offered her pudding and there she went for probably 15 minutes with her choosing between eat and drink and it was so intentional. She would say eat. Take a bite. Say eat. Take a bite. Then ask for a drink. Just like any of us would do while eating. She did this til the pudding was gone. She asked again to eat and I said Lily it is all gone and she cried! Yes sad, but amazing! She was so on task the entire appointment  They were with us for 1.5 hours and Lily was awake, interactive and the biggest thing is she never had a seizure so she was awesome with this team. They were so wonderful too! They all had tears in their eyes and said this is why I do this job. I asked God for people with patience and patient they were. They said no need to test anything else out, she is a perfect candidate for the eye gaze system.
Now next we have to see two other systems and decide which one will be the best for her, but we will be getting her this amazing technology, in our home! And mounted to her chair! I feel a door has been open that I thought was bolted up. I feel like we will get to hear what she has to say now.
I may not be like in my dreams at night, but it is even better because it is going to be real!
We are praising God for these amazing gifts we are given and pray every non verbal child gets a chance to communicate with their family just like Lily is getting the opportunity to.
I am wordless on how I feel, yes I just wrote a lot of words, but how I feel about the actual chance to hear what Lily has to say .... absolutely wordless.
Keep us in your prayers as we continue this journey and I promise to keep everyone updated!

Tuesday, February 12, 2013

Slow Down Mama

One day scrolling through my news feed  as I often do, and I stopped at a black and white photo of a snugly  chubby baby sleeping with the words “slow down mama” on it and I stopped and looked hard at this picture. These days anything with a baby is gonna make me stop, it doesn't really matter what words are attached, or at all. If you have recently had a baby and we are Facebook friends, know I am stalking you. My baby just turned 4. He’ll eventually be in a booster seat; he hasn't worn a diaper in a year. He talks about beating up bad guys nonstop and really thinks he is a power ranger. And what’s not even fair is how he never was a baby. The dang kid crawled at 5 months. Pulled up at 6 months! Yes you better bet your bottom dollar that I was thrilled he was well and more than fully able to do things his sister couldn't  but it would have nice for my “baby” to have been an actual “baby” for more than a few months. So yes my ovaries cringe when I see a baby. I am looking forward to this new place in life with my "littles" being more independent and going back to just having Lily be the one whom I must care for in a way that is similar to an infant, I know this is good, but it still hurts knowing my baby days are over. Had Andrew not gotten the whole snip snip I would be begging for another and I know it isn't what we need, but my want is stronger than my sense of need. So it is a good thing we made the decision when we were of sound mind and during a time of sleepless nights and knowing we are done done done with that phase.

So I was looking at this photo. The baby reminded me of our girls, they were both so robust and dimply and just amazingly precious, Oli too, but he has always been a skinny man J, there is something about a chubby baby! So I look at this picture and read those words “slow down mama” I am reading words on my news feed on my phone while Andi is watching TV, while Oliver is playing Power Ranger, and while Lily is rolling on the floor. I am mindless to them. I think oh how I wish they were babies again, not realizing this phase too is passing before my eyes. Oliver won’t be a 16 year old playing Green Ranger beating up bad guys (well I hope not at least); Andi will be off with friends, or away in college… not an arm’s length away and Lily, well with Lily I don’t ever want one day to pass I regret missing a chance to just snuggle her.

Slow down Mama.

But we are busy right? We have sports practice and games, we have therapy and Dr. Appointments, tutoring, we have wheelchairs to maintain and groceries to buy, dinner to make and friends to keep up with. Date nights we wish for and books to read and news feeds that need to be paid attention to. Right?

Slow down Mama.

I wake up with a million things to do day and lay down at the end of my day exhausted, watch mindless TV, scroll on my phone, play words with friends and wonder did I ever even acknowledge my God today? Did we chat at all? Did I do anything with our kids that went beyond their proper care? I’ll do it tomorrow I mutter to myself to help pacify the guilt that grows in me.

Slow down Mama.

I look at my calendar for each week and want to cry uncle. I look for things that I can give up and find none.

Slow down Mama.

I know there are lots I can’t change, but I also know this is my life, my marriage, our kids; I can do things with intention when I am able to do them. I maybe can’t change the appointments, the therapies, my job, the sport events, the tutoring, but the time in between I certainly can change. Car rides with discussion, dinner time conversations.  I don’t want my 4 year old to say at lunch, I can play with my phone too it’s time to put down the phone.  I can go to sleep earlier and not spend my time on mindless TV, which can help me to wake up earlier and spend time in the word. Maybe walk the dogs. Get back to exercising? Nah. But it is time to slow down Mama. I hear it loud and clear and the time is now to do it. I don’t want to look back with regrets of nonsense time suckers. I want to look back and smile thinking about the messy table with valentines on it, crafts that were made and cookies that were baked. We are given just a certain amount of time and wasting it would be a tragedy.

This lent season and moving on into this season of life my mantra is “slow down Mama” and I intend to.

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