Thursday, April 7, 2016

Anniversaries

Today is the one year anniversary of the scariest day/weeks of our lives. On this day, April 7th, last year Lily had her spinal fusion surgery. It was an awful day that turned into an awful 2 weeks. Well maybe an awful 6 months. Things happened we never expected. Our fears caught us off guard as they were rational fears. Believe me, I am used to irrational fears, but these were rational. She was a sick girl and it was hell to witness.
But I can honestly say we are thankful for today. We are thankful for a healthy girl. A happy girl. A brave girl, well frankly, a brave woman. It's been a year a many changes and those changes were hard. They were so hard. There were more hospitalizations, ER visits and Dr. appointments than we have had in her entire life this past year. Things that were never a concern had become a concern. But today. Today things are good. Lily survived the flu without any respiratory distress, at all. She has been able to wean off some seizures meds (she still has seizures it appears with or without the meds) and is much more alert and happy. She has been more communicative with her devise and despite all the wishing the day would never come, Lily has become a woman and it wasn't the end of the world. Not at all actually. Tough on us emotionally, yes, but not tough on her and that is what matters.
So guys I am so happy to say this April 7th we have a beautiful, brave, healthy 13 year old daughter. One who has made enormous strides this year and one whose been nothing short of a miracle.
I know this special needs journey is a roller coaster. I know some days will hurt more than others. But I have a perfect sense of acceptance with Lily and her being exactly who she is. 
I know it takes a long time to get here and even tougher time staying here, but when we face what we could lose, it changes what really matters. And what matters is we are who we are and we are exactly where and who we are meant to be.
Can I get an Amen?
Her brutiful scar one year later

Friday, April 1, 2016

Andi Jane turns 11

So somehow it's been a year since I wrote this Andi Stuck in the Middle post. 
One year. Like 365 days. Actually since it is April 1st it's been more like 380 days or something. I'm not doing the math. There is no need. You do it. OK so I did the math.. 378 days. 
But my point is somehow after all that marveling at the fact our middle girl was 10, well now she's 11. What the heck.
Why do they keep getting older, it's so unnerving. 
So Andi Jane is now 11. Dude. 11.
She is still full of fire and crackers. She is light in the dark and can be a million shades of blue when she isn't feeling what we are feeling.
She is getting better each season at volleyball and basketball. She loves to learn ways to take care of her skin and hair and bake all kinds of treats. She makes about 80 billion Musicallys a day and she really likes Instagram. She has amazing best friends that I prayed she would have and pray they continue their relationships.
She fights for injustice at her young age. Sticks up for kids who don't stick up for themselves. She stands beautifully tall at 5'7" and continues to grow what seems daily. 
She has recently started babysitting and has become CPR certified as well as completed a days course of babysitting class. 
She loves babies and is the best little mama I know.
She is smart, she is funny, she is sassy and full of spirit. Her compassion surmounts anyone I know and I know it stems from loving Lily unconditionally from the day she met her. But also know it comes from her being her.
When she was a little I used to wonder if we would ever both make it out alive, I always knew she would move mountains when she could figure out how to focus her energy and she is getting there. 
I pray she continues to learn on her own about things that light her fire. I continue to pray she walks with Jesus and learns to know him in her own way, not her parents way. I pray she just continues being who she is, because no one does Andi Jane better than Andi Jane!
May you always be comfortable in your own beautiful skin. May you always proudly stand a head above the rest (literally and figuratively). May you always just be you. There can never be a more beautiful you! 








Thursday, February 4, 2016

Oliver's 7!

So 7 years ago today I went into labor after a pedicure and a castor oil root beer float. I did what I had to do. If he didn't come before Friday the 6th I had a c-section scheduled and I didn't want a c-section. So 7 years ago I, for the first time and with my third child finally went into labor naturally at home, well as natural as I could manage.
I didn't really want him to come out. I knew it was my last pregnancy. I knew life as we knew it was gonna change. But I didn't want that c-section and I heard that you really can't stay pregnant forever.
After a fairly quick, painless (haha, just kidding) labor at 12:13 AM on February 5th 2009 Oliver Isaac Steven came into our world and changed everything. For the best!
Here we are 7 years later and ever since December 26th all we have heard about was this day's arrival. I just emailed his teacher these words "as I am sure you are painfully aware, tomorrow is Oliver's birthday. What time can I bring snacks" She emailed me back "Thanks for the laugh". This boy has made his birthday known to anyone and everyone he meets!
Just last week he took his gift request to our friends/neighbors house and showed him what he wanted on Amazon, walked away and came back a few minutes later and asked, "so did you buy that yet?" It was something for $150!
His guest list is huge, his gift list is huge. I wish I could say he is one of those kids that said instead of giving me gifts send all the money to an orphanage. And maybe we will get there. But not this year. Not at 7.
I had another friend ask me to clarify his gift as he requested to her daughter. I clarified and she said thanks, you never know with Oliver, he dreams big :) and that got me right in the heart, in a good way. He does dream big. He does everything big. He lives large and he is only 7.
Sad things break his heart, funny things make his sides ache, owies hurt him more than they probably should, he lives life to the fullest and almost always with a smile. Unless someone or something died in a movie. Or he fell. Or someone hurt his feelings. Ha! He is just one of my most favorite people in this world.
He has it all figured out at 7. He is a quirky kid, he isn't a "boys boy" and probably won't have a professional athletic future, but whatever the future does hold, it's big.
He loves his family and it is so obvious. Last weekend we were all walking around an outdoor mall area and we saw a bunch of princesses standing outside a restaurant  (I am serious, like Cinderella, Jasmine, etc) and I said "Oliver want to take your picture with those princesses?" He said "No, I don't like princesses, except for Lily. I love Lily" he genuinely thinks Lily is a princess. I remember him saying a very similar sentence when he was 4 and he still doesn't waiver from Lily's princess title.
Also last week during football he was on the bench with a couple other kids, those kids were jumping over water bottles and Oliver said to the kids jumping over water bottles, "My parents didn't pay good money for us to jump over water bottles". He's that kid. He may never be super popular sporty guy, but he sure is funny. He loves me to read to him every night and he loves to read to himself. He loves school and he loves his friends. He has more girl friends than boy friends but plays great with everyone. He is just easy to be around and so easy to love. I can't believe tomorrow he will be 7. My heart aches a little when I see baby pictures of him. I just can't believe how they just keep growing up. {Sigh}
Happy Birthday sweet boy, I am so glad God gave us you!












Thursday, January 28, 2016

I'd Always Choose You

I'm waiting for the fog to lift. Or maybe I am waiting for my stomach to settle. I am wondering if I will wait the rest of my life for those things.

2016 has come and it didn't get the memo. Sadly several stars names have been written all over social media with their too early dismissal from this world. And although it didn't make the news feeds of everyone, my news feed was filled with the loss of not one, but two little girls who share the same genetic mutation as our Lily girl. CDKL5. Their names might not have made the national news, but their lives were great and they fought harder to live than they ever should have in the mere time they were with us. Harper, 5, and Sorrel, 15 months, both left this world this month and it's been shocking and well to be honest, I don't have the words because I don't have the comprehension.

When Lily was diagnosed it meant nothing more than finally a name. We spent 6 years not knowing and a name said this wasn't my fault. It meant by pure spontaneous luck, a gene wasn't made appropriately and it had devastating effects. How devastating? We didn't know, we only had a handful of other cases to look to. Kids seemed to be similar to Lily. OK we have a sweet kid in a wheelchair with seizures that we will never control, we already have that. We already knew that. It sucks, but death wasn't on that list. Death was never on the list.

Our plan is to get the other two to college and careers/families of their own and Andrew, Lily and I will ride off into the sunset in a handicap accessible RV and then the story ends. That's it. We all live together forever in an RV. The story ends there because the thought of loosing her is unacceptable and imaginable, yet on the other hand her loosing us is the same result. So no one looses anyone. We live to our 100's and then we all fall asleep together peacefully.

But my rose colored glasses are getting foggy with all this reality surrounding me. Children are dying and that just seems so incomprehensible to me I still can't wrap my brain around it. I realize I can't change the way we go about life. I can't hide under the covers (although some days it is tempting) I am just lately feeling like I am on heightened alert. It's like I know a bomb can blow at any minute ruthlessly destroying my entire world, but it hasn't, there are no warning signs so I am going to try not to think about it. And if I do think about it, I can be more intentional with my touch. My words. My love.

I want to hug those mama's (all of them who have experienced this loss) until I can't hug them any longer and some how take away even an ounce of their hurt, but I can't take anything away. It's an unfix-able thing; loss. It's unimaginable until you are there and then that's it. Unfix-able.

I loved the book (and movie) The Fault in our Stars, Hazel Grace was so afraid for Augustus to get close to her because she was, as she said, a ticking time bomb. She wanted to protect him from being broken by her but he didn't care. Augustus wanted to love her regardless of the fact that she could die at anytime. The book was devastatingly tragic and ended different than we all thought it would at the start, but it was so beautiful. Or as Glennon from Momastry would say brutally beautiful - "Brutiful".

Sound familiar? Kind of like life right? It can be so devastatingly tragic and how often does it ever end how we think it would. But it is such a beautiful ride. It is filled with laughter and tears. Heart fillers and heart takers. Love and indifference. It's messy, it's sweet, it's harsh and it's filled with special people that show us unconditional love that we would take the heart breaks that we may endure because their love filled us deeper and made us better than we ever could have been without them.

So regardless of all this, all this hurt, all this risk, I would choose Lily any minute, any day, any hour, any world. I would always choose her.

Being Lily's mom I get to see life in a way so many others don't. I get to experience life in a way so many others can't. I am lucky to be her mom and I would, no matter what, have never chosen anything different. Time bomb or not.




Wednesday, December 23, 2015

What hurts the most...

Last night in the car Andi I were talking about maybe going on a hike if the weather clears up this nice long weekend we have ahead of us, and she said "oh yes please!" and I then said "we would have to see if Grandma would be able to hang with Lily while we go" and that's when she dropped the truth bomb. The ones I like to avoid in order to just breathe. She says "that makes me feel like crying, always having to find someone to watch Lily so we can go on hikes and other things she can't do. I just wish sometimes she was able to do everything we do". And there it sat. That bomb of truth I keep circling around because if I keep things running smoothly and manageable and busy, I don't have to focus on that deep hurt that sits in my chest. The one that has been there for 13 years and 4 months and will never ever go away. 
I do a good job at accepting and loving and dealing with what we have. I adore Lily and accept her and know I would never be the person I am if she never was the person she is. Those are things I know. Those words are my Life Song. BUT I'd be lying if I said that her daily suffering didn't cause an enormous ache in my heart. The thing that always leaves me yearning. The restlessness that never ceases. The gaping wound I keep bandaged so well others think it must be healed. 
I told Andi, "I know.. it's just our story. Our family."
She said she knew and then quickly changed the subject and I grew quiet as we drove home.
It's funny how as time goes on the things I crave to experience with Lily has changed. I still crave conversations with her. The "typical" mother daughter relationship I will never know with her. The fights over Iphones and friends and clothes (thing I know would drive me insane at the time, but still feels such a loss to not have) but what I think I crave most now is the sister relationship my girls don't have. (I know people will say but your girls have a great relationship and they do. That's not the relationship I am talking about) 
I see sisters and have an intense craving for my girls to experience that bond in the usual way. I have a sister, my sister has two daughters, most my friends have multiple girls and I watch them and I am so jealous. And I hate to be jealous. I hate to waste any energy of jealousy, but when I am being honest, jealous is the word that comes to mind. It's like the whole world is eating a hot fresh Bosa donut and you are gluten free. You watch them take that bite and you are starving and you can't do anything but watch them lick their sticky fingers and pat their bellies and you kinda want to hit them over the head with your gluten free donut, which of course is as hard as a rock. It's like that exact moment times a million that never goes away. And I never want to hit those sweet sisters I see. I just wanna yell at God a little. 
But here is the deal, when I do yell a little at God (and I do), he hears me and it's in those moments where I don't think I can take another step, he carries me through. It happens every time I loose it and he listens and he lightens the load. And then I feel a sweet release and know I can pick up again and move forward again. Off to my hamster wheel till the next time the truth bomb is dropped.
I don't know if it's healthy to run til I break. Probably not. But I am not writing this as a self help post, I am simply sharing how my heart breaks and how it can feel a little better. Having hope is the only way I know how to survive this life we were given. I have so much hope in an eternal life and I have a vision of Lily and I on a bench one day in central park talking and laughing like we were never able to do here on earth (yes my heaven is late spring central park - to each their own) and knowing I have faith in God, I have hope in our eternity. And that is what moves me forward every day with a sense of joy some others may wonder how it is possible. So yes I hurt, hard, I hurt hard. Yes I feel sucker punched moments, but I also feel joy and I feel hopeful when I know who to hand that hurt to.

C.S. Lewis said "I learned now that while those who speak about ones miseries usually hurt, those who keep silent hurt more".
I share my heart break because it makes it hurt less. 

Merry Christmas - Cheers - 

Some may like a little cheerier Christmas posts. But as my Andi would say #sorrynotsorry 






Monday, November 2, 2015

Updating

Goodness gracious I am a horrible updater!
Here is the low down on miss LilyAnna Blu.
Since surgery in April she was hospitalized 2 times and was in the ER 3 times.
She has dealt with constipation, two UTI's, a virus and then the virus settled in her hips and caused inflammation that caused great pain. All mostly resolved now.
She had 2 wonderful stays at the Ryan House whom we are forever thankful to the parents who made that place happen.
She has weaned totally off Sabril, in the process of weaning Triliptal and we are trying a CBD oil that is legal in our state, but not really showing much improvements of any kind. I am reading you have to give it time and tinker with the dosing. We aren't giving up, but I am loosing hope that it is the miracle we are seeing all over the news and social media, to us anyway.
Good thing is I have a protected heart. I have a money back guarantee type of surrounding so when things we are told will be that miracle and they never are I am not crushed like I used to be.
I am not crushed because while it may seem I have lost hope, I haven't really. I just lost hope in things that will never be.
Here is the deal. If Lily never goes a day ever again seizure free. Basically if for the rest of her life she has daily seizures, we won't love her any less. Will we do everything in our power to try to make her life on earth more comfortable? Yes. So I will always be willing to try something with the slightest hope of making a change for the better in her life, but I will never let those results crush my soul again.
I have spent years with soul crushing, hope sucking results from things we thought would be her saving grace. I won't go there again.
So yes we will give that study a try, give that new med a shot, we will try that 100% all natural herbal option (all under the care of her neurologist of course) but my hope will never be in a product. A substance. A remedy.
My hope is and will remain in God. Bad things happen. Pain can be crushing, but God is still good. We are still good. Lily is perfect. Created in my womb. God makes no mistakes.
I have learned if we live on the avenue of God makes no mistakes than we really can stand firm and safe knowing and trusting in that.
Andi is in a really uncomfortable state of pre-teen hell and scaring the living daylights out of me in fear of the teen future vastly approaching. She is also in volleyball and will be in The Hobbit at a local theater later this month. She is also super sweet and wonderfully helpful. So it's a give and take. Mostly feeling like taking lately, but we had a rough morning. You know the kind where I beat her and kicked her and told her to walk to school in the below zero temperatures. Actually none of that happened. I asked her to BRUSH HER TEETH. She did and stormed out of the house and walked to school (gasp) ever so mad at me in 60 degree weather.
Oliver is in karate and basketball. Oh and hip hop. They are both taking an after school class that they are loving. It's hip hop. They were thrilled to have been taught to whip n nae nae by someone other than their mom.
I am loving the extra hour after school. Shh. revert back to the whole tween crap for reasons for that sentence.
So there's my update. We just had a safe, happy and healthy Halloween.
This all should suffice as our Christmas Card.
Halloween 2015 Merry Christmas





Thursday, August 13, 2015

Give a Kid a Cookie

It is pretty rare that I read a book and I say holy crap, that is my life. Written from a person who is spying on my family. But it happened. It actually happened a long time ago before I even knew it was foreshadowing my own life. But it happened and I guess it probably happens to a whole lot of tired mamas when they read Give a Mouse a Cookie.
I am sure you all thought I may be diving deeper here with a start up like that, but I am not.
I am a tired mama and my kids are like mice with cookies, that ask for milk, then of course needing a straw.... except one kid will want water with ice, the other will want the milk. The other won't ask for anything because she is non verbal but I will feel bad that she isn't asking and I will make her a glass of chocolate milk.
And then we will go from mom needs a little nap to asking them to just be quiet and color for a bit, but then we will need to find tape to hang up that colored art work. And mom never gets a nap. And those kids quit that nap crap all when they were like 2 so yeah. No rest. No naps. Not even ever.
Oh that book is so true. It was true when they were toddlers and guys it is true when they are school aged kids. I can only imagine it will be true as high schoolers and maybe even into college.
I love my kids! Dearly! But man. They are exhausting.
I work. I have to. I always have. They know this. This isn't something new that just happened. I have always worked. I got 1 fortunate year off when Oliver was a baby and worked from home, but I have always worked. Even when I was home, I have always worked.
I am however fortunate to only work the hours they are in school. I take them to school, go to work and am there to pick them up. And because of those things they get to do things like karate, basketball, volleyball, wear clothes. Eat food. Sometimes even get stupid crap at Target when mommy is getting her stupid crap there too. I am not perfect people. Shopping soothes me.
But even though I am there at drop off and pick up, they are often upset that I can't eat lunch with them at school every day.
I wish I could sit and have lunch with them. I love that they want me there, I really really do. But I can't do that very often. It is a special treat when I can make it work, but then they both have the tendency to cry and want me to take them home with them after lunch. Sigh. Not winning. Am I ever winning?
I realize though as much as I relate to this theory and see this in our own children, I know this is how I operate as well. It's how we all operate right? I mean Laura Numeroff didn't just come up with this idea by following my future family around back in the 80's. She probably had children of her own that had this empty hole inside of them that nothing ever satisfied. Laura herself probably did as well. She didn't stop at that book she went on to make an entire series of books all following this theme.
So sometimes I end my night exhausted and know tomorrow will bring me the same things all over again until they grow up and move out and move on. Except Lily, she isn't a jerk and won't move out on us. But then they are gone and I will be like ...hey want a cookie?. Please come home and have lunch with me. I will pour you milk. And ice water. And give you a straw.
It almost seems unfair the way this life cycle goes. Here today driving us crazy, gone tomorrow driving us crazy.
We all have this insatiable feeling in us, it starts as children and some may die with it inside of them. I like to think I am working on this. I am trying to fill myself with meats that only God can provide and fill me with. I desire contentment and want that for our kids as well. But it's hard. We always see the bigger and better and finding the comforts that lie within our own lives is sometimes hard to find but I am working on it.
We are all works in progress. We are all thirsty and want milk with our cookies.
Praying to God for that thirst to be quenched.

Popular Posts