Monday, November 11, 2013

Piece of My Heart

I had just sat down on our couch, totally surrendering after the long day that was eerily similar to the day before and the one before that, when my 4 year old son asks me ever so nonchalantly, “When are you going to get pregnant again?”. I almost spit out my wine, another piece of proof that this mama was done for the night and said “What?” He repeats his question and I say, “I’m not buddy, you are my last baby” to which he follows up with the question. You know what question I am talking about. The question. How do mommies get pregnant? That one.
Sigh.

On the couch (I am never on the couch). My feet are up (my feet are never up). I am drinking a glass of wine. Well that’s normal. But all these signs say mom is done. Mom already helped with homework, dinner was made, everyone ate, dishes were washed. My shift was over. And I certainly was not ready to discuss the mechanics involved to produce a baby to my 4 year old son whom I still think of as a baby and have no idea how he even computed the thoughts to even wonder how babies are made. He is still a baby.

Sigh. Again.

“Well sweetie” I began, ready to give the most robotic, unthoughtful answer to his question, when he comes in with his own sweet version, saving himself and me from my awful G rated rendition, and he asks, “Did God take a part of your heart and make me out of it?”
I stop. I sigh. This time a sigh of a mother that just had her heart inflated to double the size and a breath to keep her tears from coming so to not totally freak him out, and I reply, “Yes buddy, God took a piece of my heart and made each of your sisters and then he made you.” He was completely satisfied with this answer and so was I.

Thursday, November 7, 2013

Who's the Dummy Now?

Many years ago I had a doctor tell me "When you have a child with such severe mental retardation they have many autistic traits." This was an answer to my "does she have autism too?" question.
Gulp.
I saw the word mental retardation on a report of hers once, but I never heard the words come flying at me like that. No warning, no time to duck and weave or do anything to protect myself from them. And they stung. They stung like a swarm of bees stinging my honey filled ears.
No I am not going into a tirade about the R word. I have been there and done that. On my honor, not where I am going.
Where I am going is what those words in my ear did to me.
They made me a part of me stop believing. I thought maybe he is right. Maybe she is so far gone that she knows nothing. I started to numb myself to any thoughts of her having any thoughts of her own.
He killed her spirit and my own.
Yes at times I would think oh there is more in there, I know it. But then she would totally check out. Ignore anything I said and I would think again maybe he is right.
We have had so many wonderful therapists, teachers, folks come into our lives knowing she has more, and give me hope, but we could never get her out of her world and into ours, so again I would stop believing.
I found myself much safer just caring for her to the best of our ability. Keeping her healthy and safe. But not even thinking of trying to teach her things I was afraid she didn't understand or care to learn.
I got sold a lie and I bought it. I bought it because I had to protect myself. I am always protecting myself. I have been let down a lot in my life so I have found comfort in just accepting the worse and hoping to be surprised the other way. So I kept with my walls. Walls around my heart, too afraid of my own daughter.
If those walls came down. If I believed in one more thing and it didn't go as I expected, I don't know what I would do. So I just refused to let any hope come creeping in again. This was how I was for many years.
Then early this year we had a trial with an Tobii eye gaze system. I dared to hope. Just a little. I asked for friends to pray. And I prayed. And Lily surprised us all with being very receptive to it.
Then we waited. And waited. And waited. Paperwork got lost, insurance info got confused and in all the waiting a new upgraded system became avail and then one day it was on our door step.
I didn't open the box. I posted a photo. I said "yay, it's here" I had about 150 likes. But I didn't open the box. Afraid of what would happen if I opened it and she did nothing.
Finally I opened it. I played a little. I hesitantly showed it to Lily and she surprised me and played a little too.
Then I learned some more. Gave her some more and she took to it again. Some days she liked it more than others. Some days she really liked it. Some days she could care less about it.
But I continue to learn and I continue to play with Lily and my walls are slowly coming down.
She said trick or treat on Halloween.
She said her name was Lily when I insisted it was Sally.
She said no to everything, but yes to chocolate.
And the other day I got brave, let's see what happens when I put a game of memory in front of her. My inner dialogue telling me, this is too hard, she won't understand, yet she completed two rounds in about 5 minutes or less. She found the apples and the bananas and the coconuts and liked the cheering for her when she was done. She played it like she knew exactly how to play the game, as if she has been playing for years.
That day, the day we watched our 11 year old daughter clear a 6 image game of memory I learned something myself. Our daughter IS smart. Our daughter is someone worth putting my hope into and our daughter will continue to surprise us.
Laying in bed that night I say to Andrew "she kicked ass in that memory game!" he says "I know!" But Andrew is different than me, he doesn't hold up walls like I do. He wasn't as surprised as I was. Yin and the Yang.
Lily is one special girl and I am sorry. I am so so sorry for years of not expecting anything in order to protect myself. She deserves better and from now she will get better.
Expectations are my Achilles Heel. Lily is my Achilles Heel. But I am not going to be crippled anymore by my own fears. I am also not letting an opinion of a doctor who never ran a test, who never even spoke to my daughter make my mind up about my daughter.
I will always have regrets and grieve over lost years of "accepting", but I won't let it stop us from continuing on.
She has a new lease on life. She has a reason to stop checking out. She has a voice now. I'd check out too if no one tried to find my voice.
Oh thank you God for technology, and for people who don't stop believing, and do the believing for those who don't have the courage to do so.
Lily is smart. Look out, here she comes. You're gonna hear her roar. Oh oh oh. oh oh oh.



Saturday, October 26, 2013

Hope

Hope looks like a million different things to a million different people. Hope is in a rainbow, hope is in a new day, hope is even in a jar at the mall. Hope can look like something insignificant to me, but the world to someone else.

What does my hope look like? My hope looks like a big black computer screen. This isn’t just a computer though, this black screen can change our world forever. It can change our dark wordless world with our 11 year old daughter, to a world of colorful communication.

Lily has never spoken one word in her 11 years. Through therapies, specialist, schools, prayers and begging at God’s feet for just one word, mama maybe? To our avail nothing has ever came out. Even sign language is a bust with a child who has no hand control.

To love our daughter is easy, to care for her is what we do, but to know what she loves, how she feels, why she cries, is an impossible heartbreaking journey.

But now we have hope. Now we have a computer that reads her eyes. All she has to do is look at what she wants on the screen and her words will come to life.
Her whole world will open up and we will meet Lily on a level we have never known her before.

Will it be hard, yes, there is a lot to learn. Is it scary, yes because we have put hope in things that never came to fruition, but this is different. This is tangible. This is something I have faith in and this is something that even if the phases are small, she can let us know what she wants and we can stop assuming what it is. She can now go Trick or Treating with her brother and sister in a week and be the one who actually gets to say “Trick or Treat”, all because of this big black computer screen that may only look like a computer to others, but to us it is filled with all our hope.

Thursday, September 26, 2013

Camping - Nordy style

Our family is going to Camp Land in San Digeo tomorrow!
Yup! We are going to CAMP Land tomorrow.
CAMPing.
Yup.
I grew up camping. My job was to get in the car, defend myself from my siblings who started beating on me when they were done staring out the window, era 1980's, and play until the tent was up. Play, fish, hike until my food was made and I could eat it and to go back to fish, hike, play, then watch the tent go down and get back in the car and defend myself on the ride home.
AND I HATED IT.
So to say I consider a camping family vacation, with the family we made, camping does not fit in with the word vacation. To me vacation is beach, drinks, massages, shopping, dining out.
Vacation is not packing food, supplies to cook the food, bringing bedding and flashlights and heck, I don't even know what else we need. All I know is Andrew we spent $250 at Walmart yesterday and everything he we bought was silly. We got a coffee maker that makes cover over a fire. WE HAVE ELECTRICITY. But he says we are camping. I say let's have cereal for breakfast, that's more than they get now, and he says no we are having bacon and eggs cooked over a flipping fire.
And I am not even talking about the stuff we need for Lily. Medication, diapers, supplies, equipment. And then the not sleeping. Oh my. I am telling you I can get lost in a sea of my despair of all the things about this trip I do not want to do.
BUT I have some redeeming qualities here, I promise, I may have inner dialogue of a brat, but I promise I am not one on the outside.
I am fully supporting this trip. I am packing, loading, obsessing thinking, not going to things I want to go to (ie my writing workshop) so I can make this trip happen, etc.
I am actually excited about it because we will be in San Diego, hello my favorite place! There will be an ocean and we are going with our life group which is a group of people we all go to church with that meets twice a month and we "do life together". Our kids are all really good friends, we are all really good friends with a deep connection with each other and a love for Jesus. So I am pumped to be on the beach, in amazing weather, with incredible friends with my awesome family.
Honestly if I had my choice I would stay home with our dogs. I would send Andrew with the kids and stay home happily if he let me. But life isn't all about me and my wants and my comfort.
I am giddy for this trip because the memories we will make, the fellowship we will have, and not forget each moment that this life we have is a gift! Our life is so blessed. We are blessed beyond measure. We live in the country of freedom, we love a God we have every right to love with no suffering because of it. We eat what we want, when we want. We have the blessing to have friends who invite us, others who are willing to loan/rent us stuff to make the trip easier, and family who is willing to make sure our home and dogs are all safe and cared for.
I complain because it is in my DNA. I worry because it's ingrained in me to do so. I stress because I am easily overwhelmed. But I am also able to overcome those things that I do to myself. I am able to get over my silly issues and focus on the bigger picture and I am glad I can do this.
I made a promise to myself a few months back that fear will never make any decisions for me and I am holding true to that promise. You should have seen me a few weeks ago at Women's Retreat zip-lining and walking on a log probably 30 feet in the air. I have the video... maybe I should share old wobbly legged me.
So all this to say, we are going to Camp Land this weekend! We will have an amazing time with great people and our kids will play, bike, run, swim and they will eat and get taken care of and they will fight in the car and all this will be awesome ways to make memories, a wonderful way to spend their fall break!
But my next vacation there will be fruity drinks and no flashlights!

Tuesday, September 24, 2013

Precious girl took a fall....

I've been wanting to share what happened to Lily last week, but I guess not too much since I haven't.
It was an awful experience and sharing it really doesn't make me feel any better.
Last Sunday we were all ready for church, I had Lily showered, looking adorable and all strapped in her chair. That isn't all that common on a weekend. I am usually far more relaxed and have less straps on her, but last Sunday she had the full harness and all.
I was still getting Oliver's shoes on so Andrew takes Lily to load her up, and as I sit and talk to Oliver about how his feet have grown and he needs new shoes, I hear Andrew screaming "Kim!" "Kim!" I hear Lily making weird noises and in seconds I think, she having a seizure? Why is he yelling about a seizure? Then he opens the door, wheel is off her chair and her face is all bloody.WHAT?! I am trying to understand what is happening as he is yelling, she fell, her brakes, stupid chair, wheel.. all these words are flying around my brain but nothing is sticking. My baby is crying and bleeding. I run to get a wet towel and start to wipe her off and my tears just start falling. I am shaking, Andrew is shaking, I am crying and Andi Jane is bawling. We were all a wreck trying to clean her off. I take her out of the chair, take her to the floor, get her ice and really access the damages. It appears she has road rash on the side of her head and seemed to have bitten her lip, which is where all the blood was coming from.
She is acting fine, stopped crying and I start asking Andrew, what happened. He says he put on her brake, went to start the van and her chair just went down the driveway (inclined) and we have no ramp at the end of the driveway, just a large bump and baby girl just fell forward. The wheel came out on impact which I guess is why she went to the side more than face planted. I had asked Andrew to fix the brake (again) on Friday and he did, but it just kept coming loose. We were so mad. Mad at the chair, at the sidewalk. At ourselves.
It was the worst. I called neuro and they said we should take her to the ER for a CT just in case so I did. And she was fine. All checked out. And by the next day it was as if nothing happened... to her.
We were all scarred and damaged however.
We have one job with Lily and it is to keep her safe. We failed.
I took her chair in to be fixed the next day, they tightened the brake (again), but said she needs to have it replaced. But we just had her chair fixed not too long ago. It's something I wish they paid more attention to. Brakes. Kinda important.
Ugh. It was such a miserable experience. Andi Jane was just heart broken. Had horrible survivors guilt. I should have done this, not that. She just cried and cried and cried.
Oliver was so worried, he kept saying "sorry Lily". And when he saw the pictures of her after the fact he wanted to put them in the garbage bin. Kept saying "I don't want these pictures of Lily hurt".
And as I look back at that time, that moment our family was all huddled around Lily trying to clean her up, all praying for her to be OK I realize she is the one thing in our family that will always tie us. She will always be that thing/person that we all rally around. She is the one who makes our family, our family.
I thought about how I prepare for the worst of things to happen. I am told by too many doctors about the worst that can happen to not think about it, but I realize... there is no preparing. You can tell me it will rain, but until I feel the wet on my face I won't really believe it. My heart broke for her that day. A million little pieces of my heart all over our floor and although like many times before it has been picked up and put back together, I did realize a lot in that moment. God is always faithful and his protection is always covering us, I rarely harness her on a weekend and if she weren't harnessed she would have been way worse. And our family is a strong unit revolving around this beautiful girl. My other kids will do anything for Lily and I know that even when we have our fights and frustrations, the truth of their hearts is gold. And God so help this family if something really serious happens to our Lily girl. God help us all.


Monday, August 26, 2013

Taylor Swift

OK back in May, which only felt like yesterday, we went to see Taylor Swift in concert. I am not a big concert goer. Well anymore... I went to some pretty sweet shows back in my day... New Kids, MC Hammer, Debbie Gibson, Bon Jovi, Lollapalooza (95), George Strait, ... yes I went to some concerts! Eclectic some may say. Cheap others will say because most of those I was asked and went. But honestly I have to really really like a band/person to go to a concert. Especially now. I like my ears to not ring. I like to not stand for hours, I like to not be touching body parts with sweaty strangers. I like my money in my wallet to stay in my wallet. I am old, maybe, but I think I have always been old. I have always liked to not like these things. I remember my friends just crying a river on our ride back from the New Kids on the Block concert and thinking... hu? Why are you crying. Your mom paid a ton for those tickets, our other mom just drove us across town, we were so far back my I love Jordan sign was only seen by the folks standing by us... I was just glad to be finally going home. So yeah, I don't get all hopped up on that stuff. I don't get it. I know it makes me so very uncool. I like music. Scratch, I love music. But I like music in a way that it is always around me. It's the soundtrack of my life. It is always there, but going along with me. Not screaming, jumping up and down and sweating on me. Worship at church is my favorite time of church. I love music. Just wanted to make that clear.
BUT when I want to see a person/show I am into it like nothing else. Like Bette Midler, we saw her in Vegas. AND I LOVED HER! I wanted to marry her after the show! It was one of the best times of my life! It was a show, songs, dancing and hello Bette Midler! OK so maybe my spirit is a little closer to 70 ... so what.
And then Taylor Swift. I got an email at work because we were ticket holders at this arena and it says "Any interest in Taylor Swift" in a heart beat I said YES! Long story short we got a suite, my sister and I shared the tickets, she brought her girls and friends they chose and I brought my girls and friends they chose (well I made sure the girls we brought were Andi and Lily's friends).
I asked the moms to join us because it was a school night and we were at least an hour from home and we had enough tickets to do so, so there we were 12 of us, several little girls, a teenager and girls in their early 20's, and us moms all getting ready for Taylor Swift!
I had no idea what to expect. I love her music and that was all I knew.
Then she came out! The show was amazing in ways I can't describe!
I do think us moms could have liked it more than the girls. We were all singing. We were all dancing. Taylor looked so amazing. I felt like she was my best friend. Along with the other 20,000 folks in the place probably feeling the same way. I have a point. I am not a concert reviewer, I am just one who gives way too much back story before ever reaching a point.
But all this aside, yes she was an incredible performer, her show was bright, it was stunning, it was impossible to take your eyes off of. All this wonderful stuff that we all enjoyed. But what I truly noticed and enjoyed was how appropriate she was for all ages!
Last night I didn't watch the VMA's but I saw the backlash of it. Mylie is a train wreck, she is just a few moments away from shaving her head Brittany style. That is sad. It is a sad life they live in Hollywood and as much as my sweet girl Andi Jane loves all things acting and singing I would be hell bent on ever even letting her think of that road as a possibility. Home girl here as seen way too many seasons of Celebrity Rehab.
But so often these young fresh stars see themselves only as young stars they have to start sexifying themselves. Making themselves transform from one stigma to another. It is sad to me. I understand their world is not like ours. I don't judge these young woman growing up under that hot spotlight, and I am not going to talk about something I know nothing about. BUT I am going to say what a fresh breath of air that Taylor Swift was.
What a role model for my daughters to see. She talked about not being mean and bullying. Talked about how special each member of the audience was. How they could be anything they wanted to be. She wore cute clothes but never slutty. She was an absolute class act.
I don't even care what anyone has to say about her and her dating and whatever. I don't care. Her persona on stage was outstanding. She was who my daughters can aspire to be like. She was a star in every way and I encourage you all to take your kids to see her. She is a rare find in this world and after that concert I became one of her biggest fans.
I know this sounds corny and I am sorry. But I will also add I became a Beliber after his movie and have seen things down hill for that boy sooo maybe my opinion doesn't hold a lot of water?




Thursday, August 22, 2013

Slow Down Mama part duex

So I wrote this slow down mama post in February. I wrote it with conviction and for all intents and purposes to get myself to slow down. Yet it seemed like life had alternative ideas. We were blessed beyond belief this summer! I mean BEYOND! Maybe too blessed. We never stopped! It was a crazy time with big plans and exciting happenings that seemed to elate us and overwhelm us. I am not complaining. I went looking back at our Make a Wish trip and my heart lurched thinking about that magical trip. And Splash for a Cure! How amazing it was to send a check for over $4,000 to IFCR! I love having supportive friends and family! And our Colorado trip! What a week! And then 2 weeks ago we went to Whispering Hope Ranch with Hope Kids and had a wonderful weekend! SO amazing! Then the week after I was out every single night with a different set of friends celebrating someone's something (which was amazing, I just wish they were all spaced out better) And then last weekend Lily went to the The Ryan House and the other two to my sisters and Andrew and I celebrated our 12th anniversary at a resort. The Ryan House was amazing! What a blessing to have this option now! But even on our little stayca Andrew and I struggled to just chill out. We were constantly doing stuff. Although the stuff was eating, swimming, eating, eating... spending 2 hours (!) listening to a dumb time share thing just for a gift card to eat some more, but each morning I was up at 6am. I refused to just lie around, I went straight for coffee, then woke up Andrew with my less than stealth moves and then wanted to get up and do. Then we get home, get the kids and then it's Monday and time for work and school, backed up with laundry to where I still don't see an end in sight. Oh and we got a puppy. Did I mention we got a puppy. Don't ask me why, just look at this face and tell me you wouldn't have a puppy if you saw this face.

So here I am now. Thursday. Andrew hopped on a plane to go to South Dakota for a wedding and all I can think about it how my weekend starts in a few hours. I have nothing but a conference call scheduled for this weekend and I intend on doing puzzles. Playing Candy Crush Land. Baking. Hopefully holding my neighbors new born. Doing laundry. And nothing sounds more amazing than those things. We haven't been home on a weekend in a long time. Too long of a time. I am tired. I am beat. I am looking forward to just being at home with the kids and that is it.
And as I look back at this post I am grossed out by myself. All these things we have done have been amazing things! Wonderful thing! This is such a huge case of 1st world problems. And maybe that is what I am saying too. We need a huge detox of excess. Everything we have done has been amazing. Maybe if we were able to space them out more? Who knows. What I do know is the TV needs to be off. Phones need to be off and the kids and I need to get back to the basics. Super fun, laundry folding, fun life basis.
Maybe... just maybe it is truly time to this mama to really SLOW DOWN!

Tuesday, August 20, 2013

To the me that was 10 days away from becoming a mom....

11 years ago I was 23. I was 23, married, and pregnant with super swollen feet and pretty confident in what we were about to get ourselves into. I was an aunt. A great aunt! I had this. WE had this.
There is so much I want to tell her. Her, than confident young woman about to become a mom.
I know there are a ton of blogs on this. I read one not too long ago that I loved, shared on facebook and wish I had written it myself. I am not copying her. Well I am copying her. Her and about 80 others that I pulled up on google search trying to find the one I am talking about so I could link it. But I cannot find it. It's not an original idea to want to talk to your old self. I just loved that blog post so much it inspired me and made me want to tell myself a thing or two about the adventure she, her, me was about to encounter.
1. Just because you were in magazines and people paid you to be "pretty" doesn't mean your daughter will do that same thing. I know you named her something that was unique and special because you just knew you would see her name in lights. But she will come to you perfect, in a way that you have never seen perfection. Her name will be known by many, but never for reasons you could imagine.
2. You will want to refresh on those chemistry and biology books you paid no attention to. In fact, you may want to do a whole refresher on school because you are headed down a road that you will need to know things you never thought you would ever need to know.
3. You will experience a heart break like you have never experienced. Your daughter will be the one who does this to you. It's OK. You will love her deeper for it.
4. You will get a letter from new found friends called Welcome to Holland. And you will love it. Reminds you how much you didn't enjoy your trip to Italy when you were 18 and also reminds you how much you want to visit your family in Holland.
5. You will cry like you never did before. You will hide those tears for a long time, but eventually you will learn that tears are not weakness. I would love to encourage you to embrace them sooner. The sooner you are able to express yourself to others the sooner the load you carry will get lighter.
6. Your habitual writing in your diary will become a lot more public. You learn that rawness is the only way you can share your journey and because of that you meet others, and even maybe help others while helping yourself.
7. You will loose all your faith in God and gain it back in a way you never knew him before.
8. You will have your heart broken again. And again.
9. You will always be OK though. Each time you will build up back stronger. Maybe a little tougher than before and maybe a little guarded, but it is your only way you know how to build back up.
10. You will be so proud of the little things you think your heart will burst and you will never take any skill your other kids do for granted.
11. Your wardrobe slowly starts to become less and less important. You find the faces you make causes a huge wrinkle in your forehead and your laugh causes your eyes to have crinkles. You never imagined this happening to you. You are too busy to do much about it and rely on nature to hold you up, but you will look in the mirror at times and wonder where she went.
12. You will end up a mother to 3.
13. You will end up being so busy you crave a moment to just sit on the couch and watch TV. Yes that goes away. That becomes a luxury.
14. You will be challenged by the strengths of your other daughter you never imagined being yours. She will bring light back into your dark world and also cause you frustrations you have never known.
15. You will try things you never imagined trying for your special girl. The one who broke your heart. You will try to cure her a million different ways all to no avail.
16. You will experience a son and all the rough and tumble things that come along with that. You will also experience a bond with him no one could shake.
17. You will become more simple.
18. You will become a woman of faith.
19. You will inspire others.
20. You will go through things in your marriage you won't think you will survive. But you will. And you will be better for it.
21. You will think you are constantly making mistakes in regards to your kids. Sometimes you are. Sometimes you aren't. You will do your best and feel pretty proud most of the time.
22. You will never think you are good enough, or smart enough. But you will continue to work on that.
23. You will make friends you can't imagine never knowing. You only meet them though because you have a common bond you never wanted to have.
24. You will start to like yourself. Your insides far more than your outside.
25. You will have many pets. Teaching death to your middle child will break your heart again.
26. You will laugh. A lot. You will learn that laughing is way better than crying and sometimes things you find funny may or may not be totally inappropriate.
27. You will be glad that the cute guy you met that the bar, that you married on a whim ended up being the best person you will ever know. He will make you laugh. He will get you through some really rough times. His positivism will be a little annoying at times, but you will appreciate him bringing something you can't.
28. You will get tired. To a point of complete exhaustion. But you always get up and do what needs to be done. I know how you like to be lazy, and you may eventually get to be that again, but it is good to know you can do what needs to be done when it needs to be done.
29. You will see more small caskets and attend way too many funerals and you will learn quickly you are in a world you never wanted to be in, and it can really suck.
30. You will know IEP's and EEG's, MRI's, and PetScans, you will know all about sleep studies, and EKG's, brain surgery and epilepsy. Medications and procedures. Diets and herbs. Minerals and oils. Dr's, specialists, therapists, and even chiropractors. You become an expert in things you never had the patience to even read about and learn that you have to be an advocate for someone you love because no one else will do it like you will.
31. You give your time to a disorder that changed your existence. You wonder who you would have been if this disorder never happened and you are scared of the answer.
32. I'm not saying you are self involved and worry about petty things... but well you are and you do. But the wonderful thing is you learn, you evolve and you grow!
33. Your modeling past will be that, your past. You will have no connection to that world within months of knowing your baby isn't like other babies. But you are definitely OK with that.
34. You are OK with everything, because you are strong. You survive so much because you have to.
35. The last thing I want to tell you is don't be afraid of that baby girl that will soon be in your arms. Yes she will break your heart. Yes she will take your life in a direction you never imagined, but don't be afraid of her. Hold her tight, sing her songs, dress her super cute and love her through each and every seizure she has, and there will be a lot, each day. She is going to rock your world and you need to always love her fiercely with all of you. You will be the best you can be because you get to be her mom.

It will be interesting to see what my 45 year old self needs to tell this 34 year old.


Friday, August 2, 2013

Wowzers! Splashing, Arizona, New Mexico, Colorado, ... oh my

July has been one action packed month! I mean seriously, action packed! It was like a movie with Matt Damon and lots of guns and fast cars.... Or it was like me running all over from hot humid AZ doing a billion different things all the way to Northern Colorado doing a bazillion things. Very similar. My life as a movie. Exciting. Fast cars! Big van! Small pruis. Awesomeness.
We had LilyAnna's Splash for a Cure on July 10th, which was AWESOME! We did very well! Was able to donate over $5,000! It was a great event! Lots of folks came out, our community center was perfect! Kids were in the pool, playing in the field, playground, lots of folks eating, bidding on silent auctions.. we had a fellow CDKL5 sister from San Diego make it! We had a mermaid.. seriously. We did! Thanks to Fairytale Events! It was awesome! Can't wait to do it again next year!

Then just a few days later the girls and I packed up the Prius and headed to Albuquerque, New Mexico to stay with one of my longest known childhood friends as we made a pit stop there before moving on to Colorado for Lily's clinic appointment in Aurora!
It was a good drive. The girls were so good! Lily had a huge seizure right at the start so she slept most the way. Andi Jane sang, played on the Ipad and just was Andi Jane. We stopped for dinner at Applebees's in a little town 2 hours away from Albuquerque and that took longer than necessary which ended putting us in the middle of a rain storm in the dark. No fun. I white knuckled it to my friends place and it was after 9pm when we made it. Andi got rather whiny on that last drive and then struggled falling asleep that night. She was a bit of a hot mess. My sweet friend had a great room for us, Lily slept on an air mattress on the floor next to the bed and we all finally got to sleep and woke up to a super soaked Lily and I was up and at em to get her all cleaned up. Poor girl. I got to do some laundry as well. House guests from hell right here!
My friend had to be at work early and I found out my mom was gonna meet up with us (yay!) in the ol ABQ so we had to wait for her. We had time to kill and a strange town to do it in. But thanks to the power that is facebook, I had a fellow August 02 board member in ABQ and we decided to meet up!
Very quick background, when I was pregnant with Lily I found myself all over the internet reading about my swollen feet, my cravings, my mucus plus and all that comes with that beautiful pregnant belly. In my searching I found IVillage and there I found an August 2002 expecting group. I introduced myself and that was it, friends. Then it became and August 2002 playgroup and now we all have almost 11 year olds and should call ourselves August 2002 preteens group, crazy. We still stay in touch online. I know it sounds crazy. But these ladies (and one guy) were who I cried to when not knowing what was wrong with my baby was too much to handle. I had to be strong on the outside for reasons I have no answer for and have long since thrown in the wind, but back then I kept a brave face and would cry in private to my group of friends behind my computer screen. I've actually met many of them. And will continue when I am in a town and someone says "let's meet up!" I will! We are all on facebook now and have faces much more than we ever did before. Oh you silly internet always upping things.
So yeah, my friend said let's meet and I said I have wanted to eat at Tim's Place since I saw it on the news one night so that was where we met. And we met Tim! He was so sweet! The best restaurant owner/greeter I have ever seen! After breakfast I realized my mom was still hours away so we then decided to hit up the museum! That was fun! Lots of dinosaurs and science stuff that seems to fascinate everyone from the 6 year old to the 34 year old. It really was a fun day! Then we got ice cream, on a rainy 60ish degree day, and finally met up with my mom.

Long story short we got to Colorado Springs about 9:30pm and got room service and hit the hay.
Our sleeping arrangements there were Grandma and Andi and Lily and me. I thought I wouldn't sleep with wild Lily, but I was wrong. She slept all night snuggled next to mama. It was such a treat! We slept til 9am! What?! We were at the beautiful Cheyenne Mountain Resort and had to enjoy the view at breakfast and let Andi swim before we had to hit the road again.



And then we were at our families home in Windsor late afternoon. So fun to get to see our niece and nephew and have the kids play together! What a blessing cousins are!

Again Lily and I snuggled up together that night and she slept beautifully. Soaked all their linens of course... again... house guests with the mostest! And then that AM mom, Lily and I were off to Aurora for our clinic appointment. We started the morning with an early lunch with other CDKL5 families and Rett families also there for clinic. It was awesome to get to meet so many wonderful families and beautiful kids! I was so happy to finally have my friends meet Lily too! Such pride I take in being her mom.




Back home Andi stayed back with her cousins to swim and play the day away and at the clinic mom, Lily and I sat in clinic for over 6 hours! Phew!!!!

It was a great experience! A lot of wonderful ideas, from seizure meds to change around to sleeping ideas to get her to sleep better... apart from sleeping with mom each night :) unfortunately they said spinal surgery is probably way more sooner than later, I thought we had a few more years but will see what our guy says. I am afraid he will agree. He spine isn't getting straighter on it's own. That part makes me want to vomit. Actually writing that made me throw up a little in my mouth. My baby girl. Ugh.
They said she is in the middle of puberty, from a 1-5 on the scale she is a 3. Awesome. Say that could be the reason for her seizures becoming so bad. And they are BAD! Every day she had at least 2 large ones. She had one in front of the neurologist who said that she had several seizures in one seizure. I was glad he saw it. Poor kid. Those things wipe her out too. Ruin her day. She sleeps for hours afterwards. :( I hate seizures. They suck.
Although the cardiologist didn't show I did get to see her so famous EKG that I fought so hard for. Cardio said it was fine. I saw that it said on it flattened t-waves. Again. I guess there is nothing that can be done, but it just sucks to have a heart that doesn't beat normal, especially when she has all her other things that go on as well. But it is just another Lily-unique thing. Like her bendiness. She impressed everyone with her bendy ankles and neck and arms, they said it isn't necessarily CDKL5-like but they don't think it is a condition in addition too, they think it is just another Lily-unique thing.
It was a good day. There was a lot to take in and a lot covered. A lot of tips that were all written down and a lot of talking and brain picking and snacking. It was a wonderful day that Rocky Mountain Rett Association helped to put on and it was really nice to be surrounded by kind families who get you. Oh another funny coincidence, one of the women with Rocky Mountain Rett that was making sure everyone was well taken care of looked very familiar.. long story short, I met her in Utah back in 2008 when Lily was at Shriners, pre dx, the mom looked at Lily and said I really think she has some type of rett. I said me too, but nothing yet has been conclusive. And kid you not weeks later we got the call. I was like oh my gosh, I met you in Utah! Oh the small world it is we live in.
After clinic mom, Lily and I got a beer and dinner at BJ Brewery. Lily stuck to root beer although I bet she could have used a beer as much as mom and I did.

That night Lily moaned all night long, hardly slept and then puked all over the bedding. Anyone want us over to stay?????? We spent the rest of the night on the couch with a bucket just in case, but never needed it. Not my favorite night. I have no clue what that was all about. Lily is not a puker. At all. Unless she is on keto, but she isn't. So no idea what that was all about.
Next day up and at em... played with cousins, drank coffee, munched on breakfast said our goodbyes and hopped in the car again to go to Castle Rock to have lunch with my dear friend and IFCR Board President and family while she was staying with her good friend. Let me just say lunch turned to dinner and dinner turned to breakfast. It was what I call a very good date :) Andi loved playing with Lily's CDKL5 friend, and the daughter of the sweet family that opened their home to us. It was such a wonderful experience. Lots of talking around the dinner table. What a wonderful way to decompress after such a long clinic day.
But our time there had to end as well. We still had to get back to Albuquerque to get my car and make it to Greer that night. And we did. It was about 8pm. Long day, but the girls again were real troopers. It was a good day of traveling. Slept in Greer, finally got to see Andrew and Oliver again and then went home on Saturday. Almost one full week away! It was good! It was long! It was exhausting being the sole carrier of Lily. And I mean that in the kindest way possible, but it is hard, she was measured at 4'10" and 70 lbs. It was a lot of lifting and changing, bathing, etc. A lot. But good. It was a time of bonding with my mom and daughters, it was a time with bonding with friends, making new friends, learning about this condition that changed our lives forever. It was a good trip. Memorable.


We got home Sat evening and the girls went back to school on Monday! We had a lot of shopping to do on Sunday, and laundry and all that fun stuff.

I still don't feel like we are all situated yet. I never really feel all that situated. I most of the time feel like I am surviving, not thriving, but I am at least conscious of it and working on getting back into the groove and loving this wonderful life I was blessed with.
Gotta get back to my schedule, back in shape, back in the word. I let a lot go this summer and it always makes me feel like I am running up a down escalator.
I'm working on it and know I will get this thing back in working order.
Thanks for taking the time to read the ramblings of this crazy mama.

Wednesday, July 3, 2013

Bend til I break

I may be dramatic. May be. I don't know. I have heard it all my life, Kim you are so dramatic. I remember my mom mocking my sick stomach walk to my aunt when I was little. I remember falling for a laugh. I remember thinking I would surly die when I had strep throat. So yeah, I may be a little dramatic. But it is a part of me. It's like to know me is to love me and to love me is to know I may tend to make situations a little bit "bigger" than they truly are.

But when I tell this story, believe it. It is true.

Back story, I am taking Lily to Colorado in 2 weeks. She has an appointment at our first CDKL5 clinic! I am so excited to take her. There is a lot going on with a soon to be 11 year old girl. Add CDKL5 disorder to it and mama might be loosing it. Lots of growth, lots of hormones, lots of boobies?! So with all this nonsense comes more seizures that are crushing us. Ruining her days and crushing my heart. It is hot. Like hot as hell. And I am thinking that is a true story. Hot makes her seizures worse too. It is just a huge cluster of crappy right now and I don't like it. I miss my baby Lily, my chubby preschooler, Lily. It is really hard watching her grow into a beautiful young lady and see all that beauty just wreak havoc on her. It is unfair. But I digress, this clinic appointment is important because although I do love our Doctors here, they don't work together for Lily. So if one rx us hormone therapy I can't truly trust that without knowing how the others feel about it. We are team"less", we tried with a Pali team, but after one appointment I have never felt the "team love", but this appointment will change all that. We are seeing several Doctors all familiar with Rett and CDKL5 and we can see a bigger picture together. So this appointment is important. Flying has become more of a problem for Lily and myself than a solution so we are driving. And since it is summer we are taking our time. It is Lily, Andi Jane and I on a road trip. I really look forward to it and we have been counting the days for this. But for this clinic appointment I have been needing to get lots of records and one silly ECG because her last one was 2 years ago and quite honestly her last one was abnormal so I really wanted her to get this test. I won't even get into the details of the hoops and obstacles I, Lily's MOM, had to do to get her records. HIPPA I am sure has good intentions, but holy smokes. Anyway after starting this adventure months ago, yesterday was the day I finally got every record I needed. But that ECG. Oh that sneaky ECG.

I call Lily's pediatrician to send us in the right direction and she says check with the children's hospital. I do and when I call a closer branch to our home of PCH they say they can't do it. Then we go there for a clinic appointment and I ask again and they said they can. They said send us the orders. I get Colorado to send them. I tell the lady on the phone we need an EKG, but then when she gets the order she calls me and says "it says ECG, you said EKG" I said "they are the same thing" she doesn't believe me. Tells me it is an insurance thing and that she would call me back. She calls me back and schedules for the next day. This was last Thursday and they call to schedule for 8 am on Friday. Then they call to say we need to change it to 9:30 am which changes my whole day because now Lily will need to go to work with me and I will be late. But we need the test. We go. We get there. We get taken right back and the MA looks at Lily and says "if she is too wiggly we can't do this" immediately negative. I say, "well she has had several and I am sure she will be fine." Then we lay Lily down, she makes me take off her pants and pulls her shirt up, it's chilly in there and Lily is indeed wiggly. The MA is obviously annoyed, keeps saying "see" when Lily moves and a wire come off. I am still positive and being calming with Lily. I sing to her one song and the MA says "look at this, this isn't going to work" and "I don't even know why they want this" like it was any of her business while pointing to the screen of a mess of a squiggly lines. So I am starting to wear down. My positive energy is fading fast and then when the MA says "I don't have time for her to calm down" well that was when my positive energy had flat lined and I was pissed. She didn't give us enough time. She didn't problem solve with us. She was negative, rude and I had it. I took off the probes and put Lily's clothes on. I really don't remember that much of this because I was past the point of return. Tears were welling up, my nose was running and I knew if I said one word I would have bubbled over like champagne on New Years Eve. I had to get out of there as fast as I could. The MA did apologize. She also wished us a good day. And I left that place as fast as I could and made it to our van before I exploded. The tears were flowing fast and my heart was racing. I was exhausted, sad, angry and so incredibly upset at the disrespect for Lily that I just had a melt down of gigantic proportions that I had no control over. We needed this test! This clinic is important to us. Lily's heart is very important to us. I have a fundraiser coming up. I have more appointments and specialists and therapist appointments that I couldn't keep them straight. I was showing up at home to people waiting for me. Standing others up. Waiting for others which I had the times wrong. I was overwhelmed, over cooked and past a point of no return.

I got to work looking like I had just attended a funeral. In street clothes. I tried to tell them what happened and lost it all over again. Let me also just say though, I don't cry. In public. I don't cry. I will have a lump in my throat so large that I feel like I swallowed a stone, but I don't cry. So when I am crying everyone is like oh crap. I got a free lunch that day. That was nice.

Andrew was on the road with the other kids heading to South Dakota and I erupted on him. He sounded like he was going to turn around from Colorado to yell at this lady. I told him I was fine. I was just at my bubbling point.

And still almost a week later I really couldn't tell you why my reaction to this situation was so strong. It wasn't the first time I left a Dr. in tears. Probably won't be the last either, but this was different. I felt heartbroken. Maybe it was the pressure I put on this test? Maybe it was the attitude of this lady. But I come across a-holes often, but maybe because she was a MA at a CHILDREN's HOSPITAL? I don't know. All I know was I was heart broken and beyond devastated.

So I pray. I ask my friends to pray. And I eat my free lunch. Then I pick up that phone and start calling around and find out that the main campus of PCH's heart clinic has open ECG's all day. No appointment necessary. Man if the EV just said call here .... but they didn't. I call the EV and tell them since your MA was so impatient with my daughter I now need to bring her out again in the heat on Monday and you need to send the orders to this number. "OK" she replies, "do you need to know our name?" "No I know who you are" ... glad we left a lasting impression. So Monday we brave the traffic and the heat and get to the hospital to where we are greeted warmly. We get signed in. They didn't get the fax of course so I have to call again. And amazingly the orders were sent in an instant. Wonder what I said that time? And back we go with Rene. Who says let's keep her in her chair. Let's not expose her boobs. She can keep her shorts on. And she gets the readings in a matter of minutes. Lily is calm. The gal is sweet. Has a niece with disabilities and couldn't believe the treatment we got at the other place. I couldn't either.

And the test was done. I thought man what if I just called them the first time. Screw the fact that the EV clinic is so much closer to home. My life isn't convenient. Nothing about it is convenient. So for me to think that would have been easy to go to the clinic by home and get this test done and it would be easy, then I am nuts.
But we are done. We have a long weekend with out much on the schedule but planning this fundraiser and watch a firework or two. And that is it. We are ready for clinic. I appreciate myself more. Ha. Just kidding. That was a weird thing to say. But all this made me think, who would I be if I weren't Lily's mom?
Not Andrew's wife, not Andi and Oliver's mom, not Ted and Nancy's daughter. I am first Lily's mom. It truly is everything I do in my life. I work, but it is all around her schedule. If I wasn't Lily's mom I honest to God have no idea who I would be.

I often joke that Lily needs a personal assistant. Besides me. But that is who I am. Her PA, her advocate. Her supporter. Her biggest fan. I am her mom and everything I do is for her. I give it all to the other kids too, but their care doesn't leave me in tears on a weekly basis. I give my all to a little girl who is deserving of my all. I am also a wife to a man who deserves it all. And two precious little souls that need all of me as well. I think when it gets down to it, I break because I have bent as far as I can. But at least when I break, I some how mend back up and get back up. It is a the cycle of this life. My life. The life I love. But I tell you what, after this fundraiser in one week from today I am going to have me a break. A long break. Our trip to Colorado although it is for an appointment for Lily, it is also going to be a time for us girls to drive with the windows down, sing our hearts out and relax. Relax in one of my favorite states. See some family. See the beauty John Denver was always bragging about. One more week of hard pushing and then this balloon will pop. Til it needs to blown up again.

I apologize for the lack of thought that went into this post. And the lack of proof reading... I predict I will hit publish instead of going back. And I hope no one is reading this as their first time to my blog. Sorry if you are. Go back a few posts. I usually try harder. This was just verbal vomit I do from time to time.

OHHHHHHHHHHHHHH and I more awesome thing to look forward to ! Our family won the "lottery"! Well the Hope Kids Arizona lottery! We were chosen to spend a weekend up north at Whispering Hope Ranch in August with other Hope Kids family. I can't tell you what this means to us to get this opportunity! I think we will be counting the days!

Tuesday, June 25, 2013

June is CDKL5 Awareness Month!

Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June as CDKL5 Awareness month.
CDKL5 disorder sucks. Really really sucks. Takes away everything you every thought of your child's future. It takes hopes and dreams and reconstructs them into something you would have never imagined being a dream. Hope for no seizures? Pray for her to talk? Beg for her to feed herself? I thought I would be begging God that she made the right choices, chose the right friends, met the right man. But no it is please let her have a day with out a seizure. Help her communicate with us without the words to do so.
It sucks. I don't dwell on the suckiness of it because it gets us no where. I focus on how she taught us to love. How she taught us to trust God. I focus on who she made us all become. I thank God for this disorder that changed us all. BUT I also wish it didn't have to be so hard for her. I pray that we find a cure and that is why I am on the IFCR board. It is why I fund raise. It is why I do everything I do. I want to make a difference for future generations. I don't want others to have to face this beast. I know science is vastly progressing and I know a cure is in reach. So I talk about it. I post about it and I ask people to attend our events. I will do this until I can't or a cure has been met.
I will ask you all to "like" us on  FACEBOOK
I will ask you locals to come to our event on July 10th at Adora Trails Community Center 5:30-8pm


I will always fight for Lily. I will always fight for her friends. Almost daily I log on to see how her friends are doing on our support group and it seems like someone (often more than one) is in the hospital. Someone is suffering from seizures, tummy issues, breathing issues, etc etc. We have lost many precious kids to this beast and I simply can't sit around watching it all happen. We will always promote awareness and we will always do what we can to find a cure.

Help us fight! CDKL5.com

Wednesday, June 19, 2013

Make A Wish!

Lily was granted a Make A Wish some time last year. I can't tell you what we had for dinner last night so don't judge. I recently thought it was still April, but then realized the sweat dripping off of strange parts of me which zoned me in on the fact that it is certainly June. So yes Lily got a Make A Wish. Lily got a Make A Wish because her Doctors actually believe she fits the criteria for a MAW. Do we? No, not really. Doctors are proven wrong all the time, right? But the truth is she has doctors who aren't so sure of our precious girls future. So Lily got a Make a Wish. Pretty big of a deal. They came out and we talked and since Lily isn't verbal we had to tell them the things Lily liked. I know families out there use Make A Wish for practical things, like equipment and such, but have you met us? Practical is not really anywhere in our names. The truth is our family had not been on a vacation in over 6 years! We would travel to visit family, which we love, but that was our vacation. No beaches, no mai tai's..... So we said Lily loves warm water, she loves resting in the shade, she loves to swim, she loves dolphins (because she picks the dolphin with her nose every time shown vocal zoo on the Ipad, that was for those of you who were going to ask how do we know she likes dolphins) and we knew if we were to go on vacation we knew it would have to be an all inclusive place, no car needed for travel. We also requested no flying but when they called and said hey would you guys like to go on a Disney Cruise, yes! But you will have to fly, ugh... but still YES! Then get everyone's passports they said. And we did.


Please tell me you love Oliver's face as much as I do!



It seemed like this trip was planned so long ago that it was never a reality. But then before we knew it here we were, the week before our Disney Cruise! YIKES!
The old Kim came out with vengeance. I had nothing to pack. And that is true, my last suit I bought was the one I got when pregnant with Oliver and we went to a friends wedding in Mexico.. ps we really need some more friends to get married in Mexico, that was fun... but anyway, I needed a suit. Or two. Plus cover ups, I read everything I could on Disney Cruise wear, from blogs to pintrest and all I kept seeing was Pirate clothes. Heck no. I have 5 people to pack for in as small of luggage as possible. No room for swords, matey. But Oliver did get his little outfit sneaked in. How could I not? Every little boy has a little Captain Jack Sparrow in him. But to say I went a little panicky would be an understatement. I bought more than we needed. Stressed way more than I needed. I worried about Lily, how will she be on the plane, what car seat do we use, what chair do we bring, do we bring her back brace? What if she has a seizure out at sea and not a hospital in site. Doctor prescribed enough emergency meds to keep the whole ship singing, but I still worried. And prayed. And asked everyone else to pray. Give us peace on this trip. I was telling my friend about the what to wear drama I was self inflicting and she said “I'm sure you'll have fun no matter what you wear” and I was like.. yea. Then I had another talk with another friend and she said don't stress over packing for everyone, pack for Lily, get everything you need for her and for the rest of you if you forget anything you can always buy it there. And I was like... yea. I had friends praying for a peaceful trip. I had friends praying for my sanity. We are lucky like that to have praying friends. It helps so much knowing that. But all that stress still overcame me up til Saturday June 1st. On that day it was ready or not... here we go.


I learned a chain was the best way to not have to answer no each day when he asked if today was the day


Off we Go!



We got picked up in style and headed to the airport and walked into a chaotic adventure of a million folks just wanting to get away …. Southwest. We were like crap we'll never make it in time. But then someone saw Lily's shirt and our buttons and that changed everything. We were whisked ahead, whisked through security (opened a line just for us!) and brought to our gate, were given goody bags, announced to the whole crowd and put on the plane first. Wow. Southwest and Make A Wish work together and holy crap did they ever. I asked Andrew, is this how celebrities who have to fly commercial get treated?


And we were off to.... New Orleans? We had to land and then take off again. Not awesome. Lily does do rather poorly on airplanes and this was no different. She had a few seizures on the flights and up and down, up and down is not awesome for her. We ended up using an old seat of hers that is a tumble form, but also a car seat and FAA approved and bought a fold up chair that is one size up from ours off craigslist. We used the entire trip, the seat in the chair, it looked a little hokey, but it worked. We finally got in Orlando and stayed in the hotel there (in the airport) that night. Not much to report, we had dinner, Lily had seizures, I thought this was the worst idea of our life, Oliver and Andi fought and had to be separated 80 times and then we went to bed. Oh and I realized I counted wrong on one of Lily's meds. I have no idea why I thought she needed 3 packets a day when she really needed 5. Yeah big difference when being gone 5 days. The one person I committed to packing right for.... yup that’s me. The good thing is I did pack for a few extra days just in case and counted that if we got home when we were supposed to she will only have one half of a packet too little. Totally survivable. If we got home when supposed to of course (and we did, this wasn't a set up for a story later) :)


Woke up, ate and got on the Disney Magical Express!


All loaded up the coolest, biggest bus!



Started to get jazzed! Lily had no seizures yet that morning and the day was off to a good start!
Got to Port Canaveral around 11:30am and on the boat about 12:15pm. In line Andi found a friend in a little 4 year old girl with down syndrome. She was the cutest little doll face ever and Andi just gravitated towards her and the attraction seemed to go both ways. So much the little girl wanted to hug Andi every time we saw them later on the boat. My Andi...





We were too early to get in our stateroom but started to check the place out. Went to guest services to get some stuff squared away (Make A Wish gave us a debit card for food and souvenirs and they gave us a credit to pay for our excursion, but we (obviously) had to give a card so we could you know... mai tai's? Then went to the Cabanas and had some amazing buffet! Like what the heck, this is all included? It was like Vegas, minus the strippers and add Mickey Mouse! Then the kids swam while waiting for our room and there Andi met another friend straight off the bat, this sweet little southern gal, Olivia, spotted Andi who was standing by Lily and told her she had something in common, that she had an older sister with down syndrome and then they were talking and playing. Olivia, I am pretty sure, thought Andi was older than her almost 5' tall frame 8 year old body pretends to be because she was 14 and as sweet as she was she was probably looking for a friend who could hang out beyond the Ocearner club level. But Olivia plays a big part in our story. We'll get back to her later.


Finally we get to our stateroom! Holy smokes! It is huge! Everyone says on cruise rooms are so small, but thanks to Disney and Make A Wish, not for us! We have a welcome fruit and cheese basket/tray and a welcome packet about our weekend.






We saw we had the early dinner package and would have dinner at 5:45pm each night and would rotate restaurants. First night we arrived at our table to see this





And we met Paulo and Micrea. Our best buds of the week! I know these guys are professional and work for tips, but I swear these guys ended up feeling like family. We wanted to sneak them in our suitcase. They were AMAZING! The kids were almost in tears on our final good bye with them.


Andi is so sad her water camera took horrible pictures out of the water and her pictures with those guys didn't show up


Then after dinner we put the kids (all three) in the Oceaneer Club for an hour or so and Andrew and I walked the boat, got a drink and checked the place out. We went to the spa to schedule a massage that we never got because we were so busy and where Andrew saw they had a sauna club you could pay a fee and the whole time there you had full use of this amazing place with a sauna, special showers that had aromas and names... I really don't know what they were or what they did, some where called rainforest …. Andrew really wanted us to both get a pass, but I am well... cheap.. AND I knew we had so much planned I might as well have thrown money overboard, but I encouraged him to get one and he did. Then back to get the kids and those crazies still wanna do stuff! Andrew asks if I mind him going to his new found favorite place, the sauna, and I say sure! We are gonna go karoke! Andi's choice of course! Disney has night club type atmosphere's for families, it is so cool! They of course have adult only places as well, but it was fun taking the kids to the karoki place. The room only had a handful of people and the kids were begging to sing so since Oliver can't read yet we decided on Happy Birthday. The DJ said his birthday was coming up so they decided to dedicate it to him. It was hilarious. They have no fear and the whole crowd was cheering. Silly kids. Lily and I enjoyed watching them. Andi says “mom you love to sing!” and I said “only around people who love me unconditionally”. Later we met up with dad while watching Wreck it Ralph, Andrew took Lily and Andi to the arrrrrrr-cade while Oliver and I stayed in the movie until I told him I cannot sit here any longer. I needed toothpicks for my eyes! We are an early to bed, early to rise family and even though we were 3 hours later than our time, I was done. It was almost midnight and we had to be up early for our Bahamas excursion! Oliver said ok and we went back to our room that transformed from one bed and a couch to 4 beds (and the next night our sweet hostess customized the sheets for the kids) and we hunkered down for a few hours.
Oh Lily went that whole day with no seizures!


The Redstripe was dads... 



Bahamas Day! We had to get up, eat, and get to the D-Lounge by 9:30am. The room was full of people and we all lined up and filed out. We got to take a different route since we had a wheelchair and walked with another Make A Wish family. Andrew and the dad soon became buddies! We were at the end of the line and there were some issues that put us way behind the rest of the group. I think we probably got to the Atlantis Resort at least 30 minutes behind everyone. We did of course meet some incredible people at the end of the line. There was another family who was late and they ended up becoming friends as well. At the Atlantis resort we lost our group and had no idea where we were going. We walked all over the place, we were sweaty, hot and grumpy. It took forever to find the dolphin cay exhibit that we needed to square away our family times with that seemed to get screwed up being at the end of the line. But we got it figured out, had a few hours and went to eat and play. After eating we saw what looked like a Lazy River that went around the resort. We LOVE lazy rivers! It is the best activity to do with Lily. So it was a no brainer to grab some tubes and go. We went around and it was nice. There were some waves that pushed us and we laughed and loved it. Then there was a place you can keep going in the lazy river OR go that way. No sign says what that way was going, but there was no height requirement, there were no life vest requirements so we had no reason to think this was anything but another route for the lazy river. I am sharing a double tube with Lily. She was slipping thru the whole so I had her more on my lap than in her side of the tube, but that made us very top heavy, back heavy? Whatever you call it we were unbalanced. Then comes the conveyor belt. What is this all about I ask the lifeguard. You're about to go down the rapids. Ooookkkkk????? He didn't seem concerned with the way our tube was why should I? I figured it would be like those other waves that hit which were fun and made you go faster... um no. Rapids. Like real rapids. We made it through the first round, barely and laughed because you always laugh when you don't die but thought you would. But then came the second round and I can't even tell you exactly what happened, all I know is we flipped. Lily.. my Lily who sinks, I held her up, I kept her up, Andrew hung on to our tube, he had Oliver and couldn't do anything, I kept her up but as I did that my legs, feet, elbow were all being drug across the concrete floor. What seemed like hours probably only lasted 60 seconds and then we were in calm. I was shaking, hand Lily to Andrew and stand up and access the damage that I had no idea I had until it became calm. And then my body was screaming. I had skinned everything to a point it was pure white. Then the blood came. The worst part was our stuff was all the way on the other side of the resort. IE Lily's wheelchair! We had to get back on our tubes and endure the rapids again. We switched kids, but then I had to hold on to Oliver for his life during another scary part. {sigh} We finally get to our stuff and we sit down. I know I need to get something on these wounds, but had no idea where.
I tell Andrew to take Andi on some of those amazing rides and I would take Lily and Oliver to the kids place area and I will take a rest, we planned on meeting at the dolphin cay exhibit in an hour.





While walking to the kid area I look for the first aide area, but it was really far away and we only had a small amount of time to play so I decided to let Oli play and have Lily and I just chill. PS Lily never even coughed or had a scrape. She was completely fine. Never cried, nothing. She thought I was a fun raft to ride, I think. So my job was done.
Oliver is playing. Lily and I are resting.




After seeing a few people look grossed out by my legs I decided to put a towel over them. Oliver comes running up to me and I said “ok buddy, it is almost time to go, go down the slide one more time and come back to me”. Oliver is very good at listening to rules so that was the expected outcome for me. At that time he runs off, a lifeguard finds me and says “I saw your legs, can I help you?” “Yes please” and he runs off to get a kit. He was already getting the kit to help a dad with a gash in his face from what you ask.. oh yeah the rapids. He comes back and I am staring to look for Oliver, he should have been back by now, the guy cleans it up with peroxide. Let's just say I got a little lost in the fact my legs were burning off. When back to reality I say, I don't see my son. The head gash guy asks what he is wearing and starts looking for him for me. Then I tell the life guard, I don't see him. I go running from one side of the kid area to the other and he is not there. I pray God, please, find him, please God. My heart is beating like it will pop out of my chest. My heart hurts. God please. God please, where is he?! I tell another lifeguard. She makes a funny face and asks what he is wearing. No walkie talkie though so talking to her made no difference. Please God, please God! Then from the corner of my eye I see him walking hand in hand with a manager and a young girl. I go running and meet up with them. If I didn't see them I have no idea when I would have found him! I get him and grab him. He starts crying and said he couldn't find me. The manager said we were lucky he was found by … our little friend Olivia! She saw him wandering, recognized him and took him to come find me. Ahhhhh. Oh Lord, you work in miraculous ways. She said in her darling southern drawl “can I hug him?” because he was just crying and crying. My sweet sensitive buddy. And my heart. Two of life's scariest moments back to back. I am positive several years got taken off my life that day. Might as well start smoking now. This ticker won't be going much longer. Then I see Andrew who says “what the heck? We need to be at the exhibit to pet the dolphin” I say “you have no idea” I try to explain as we run our butts off in the Bahamas heat to get to dolphin cay. They let us in late. There was a woman there who treated us like royalty again and we got on our wetsuits, listened to some rules and went to meet Kelly the dolphin.







I had figured by this moment the only way our day would be complete would be if we had to fight the dolphin off Andi, but it didn’t happen. Kelly the dolphin didn’t want to eat any of us. She let us hug her, kiss her and play with her. It was the most incredible moment of our lives. Lily was sound asleep until we put her in the water. It was a little cool, but nothing too bad. She was obviously awake in the water, but got also very excited! Kelly came near her and we think Kelly knew Lily was a pretty special girl! When it was our families turn we all went together at first to see Kelly. We all got to pet her and talk to her. Then we went individually. I went first (not by choice) and first hugged Kelly. I had my hand right on her heart and it was the most incredible thing! She felt so smooth and she was so gentle. I then got to kiss her! Right on the lips! Then it was Andi’s turn and then Oliver’s then finally Lily and Daddy! They spent extra time with her. Lily was kicking and happy screaming! She was loving every minute and Kelly loved her. It was such a precious moment. It totally solidified we made the right wish choice for Lily. Lily never had one seizure that day. Not before the dolphin, not after. I had asked everyone to pray for that day to be a perfect day and it was. I know we almost died, and lost Oliver, but none of that mattered. We survived, he was found and we got to be in the water with a dolphin! Regardless of the fact the salt water burned my owies like nothing else... it was still the best day! We then bought our pictures with Make a Wish money. We were allotted so much for souvenirs and what better souvenir than photos of the best day ever!? Then hopped a shuttle and got back on the boat. A little time to clean up and off to dinner again, with our favorite buddies.





Tuesday was Castaway Cay day. We were given an allowance for excursions and we spent it all on the day in Atlantis and decided to make Castaway Cay day a lazy beach day. Yet Make a Wish surprised us again with all day rentals of snorkeling equipment, rafts and bikes if we wanted. It was exactly what we wanted. A lazy day. Castaway Cay was really cool! Lots of characters there, lots of cool scenery. Lots of places to park your butts and relax.


Andrew took the kids snorkeling while Lily and I sat and watched the shore. She sat in my lap, our feet in the sand and there we sat. I can honestly say that was my ultimate most favorite  moment of the entire trip. A lot of thoughts went through my mind during that peaceful moment and my tears came hard and fast. Thank God for sunglasses and beach towels. The moment was really important to me and while I’d rather not elaborate on it all, what I will say was the moment is something that will last in my memory forever.




Then we ate lunch. Which was amazing! All included with the trip. And our buddy Paulo was there too! And so much ice cream! Anywhere! Anytime! Ice cream!





We went to walk around and check the place out after lunch. It was hot and really humid. It looked like it would rain and one point we had a few drops. Oliver says “what is that wet stuff that just dropped on my head” Spoken like a true Arizona child. But it never really rained. But it was hot and humid. And Lily had a seizure. Then while I was getting braids. Yes... when in Rome, or rather.. when in the islands.. The she had another. It was too hot for her and Andrew said he would take her back to the room. They left and napped for a few hours! I took the kids to a water slide that dropped you right into the ocean! Then we snorkeled some more and then we had to get back to the boat for a special Make a Wish private meet and greet with Mickey Mouse!







We met all the other Make a Wish families and Mickey Mouse! Let me say Lily was beyond excited to see him! She was screaming and jumping her body and even Mickey motioned he was as excited as Lily was! It was another amazing moment of the trip. And another moment to say we made the right choice. This was Lily’s trip and she loved every minute! I was so thankful Andrew took her back to sleep off the seizures because she was as good as new afterwards.


Then where are we... dinner again? I am sure that is a safe assumption. Each night we had dinner at 5:45pm and rotated restaurants each night, except the last two nights we were in the same place at the same table and there of course, made new friends again at our table. This family was fun the mom and dad sat in the same positions Andrew and I were in, then we had Lily at the head of the table and the other two kids in the booth. The family next to us same thing. They were brother and sister 21 and 17 and the girl was oldest. They were just like Andi and Oliver and they kept giggling because Andi and Oliver seemed to be very similar to these two kids when they were younger. It was really funny and a fun time getting to know people from all over. After dinner which was pirate night by the way they had an amazing Jack Sparrow show and fireworks! On the boat! Fireworks! It was an awesome night!





The last day was an at sea day and we finally got to see/do all the awesome stuff on the ship we never had time to do before! We swam, rode the slide that went all the way around the boat! We laid out. Lily snoozed on a lounge chair for an hour. I took Lily in the pool and we sat for quite some time relaxing and watching Mary Poppins on the big screen. When I stood up to take her out one woman says “can I help” and then our friend from the Bahamas day was right there too! The woman got her chair for me, the kind man moved the junk from the chair to our lounge chair. It was like they were waiting for me to get up and were right there to make sure I was able to get out. Our friend from the Bahamas helped me get Lily down from the deck in her chair. It was amazing the people we met. The way they helped us. I had to joke that about 98% of them had southern accents. It made me want to move to the south. Maybe with my friend Wendy in Nashville? :) The rest of the day we went on a hunt for missing puppies all over the boat with Lily, Andi and I. That was really fun! There is a map and clues all over the ship hiding in what looks like just framed pictures. We had to use the elevator to run all over the ship. It really was an awesome time.






Side note on that elevator. Andrew found his only frustration on the vacation was the elevators. He would be standing there waiting for the elevator then when it came others would rush in and then there would be no room for him and Lily. One day he came back from the elevator so mad! I told him we’d take turns, I would take her and he could do the stairs with the kids and I had to giggle because I had one gentleman almost have his hand crushed trying to open a door for us. Another time others would move out so we could go in. They were all overly helpful and kind to us and when I told Andrew my elevator experience he said it was because I was cuter than him. It was funny. But the whole elevator thing is a pet peeve anyway. If you are able bodied, take the stairs, especially after all you eat on a cruise. Take the stairs. Elevators should only be for those who need it or have to go more than 6-8 flights. Ok I will step off the soapbox now.


I took the kids to get souvenirs that Make a Wish budgeted for us. Oliver first picks out Mickey hands, Lily gets a beautiful Minnie Mouse tunic and Andi gets a stuffed animal. All is going well while we are making our last purchase when Oliver decides he doesn’t want his mickey hands. too fricken bad I say. He starts crying. Throwing his mickey hands. Being a full on brat! I am annoyed and say you are going back to the room for a nap. He cries more. Tears and boogies all over these mickey hands when a gal named Sonja comes over to us. Asks Oliver what is wrong, he says he doesn’t want the mickey hands and she says you want to exchange them for something else? He sobs yes, hiccup, please....she says I will be right back. She comes back with a manager who talks to Oliver, takes his mickey hands, lets him pick out something else?! I was like oh man he is so lucky because he does not deserve this! The manager says wow these are all wet from your tears and Andi says.. “that’s not all that’s on them” and I say “oh andi...” dying inside and the manager says... “boogies too?” Andi says “yup” Oh good Lord get me out of here. They check us out, I grab something else just to make the transaction even since he picked pirate crap that was way cheaper. They were so kind to us. The customer service behind Disney is something I could never do justice by telling you about it. It is how they make you feel. Above and beyond. The feeling there was so magical, Andrew booked us on the cruise for next year. Ha! We will have to make payments and have til March to cancel, but we can’t imagine not going back again. The trip was magical. I know Make a Wish made this trip extra special and that couldn't be duplicated, but just being there on this magical voyage so was incredibly amazing, we simply couldn't imagine not having this experience again.


The last night we sat with our friends again at dinner. The kids were hyper and sad at the same time. They knew it was our last night with our buddies and our last night there period. Lily started up her seizures again that day and night at dinner. But we were rejoicing in the fact they never ruined our fun. She had them, napped and was ready to play again. She didn't miss out on anything and we thanked God for that. Back home she misses out on a lot. This trip I felt like we were guided by God. I know that may sound crazy, but the weather was great, yet they had a tropical depression going on in Florida. Her seizures were so much better, 2 days without seizures! That is unheard of for her! No one got sick, no one got hurt (well me, but that doesn't count). It was a trip of perfection. Like heavenly and I just know God had his hands over us the entire trip. We weren't the only Make a Wish family there and I just know all those angels on that boat deserved the trip of their life and I think they got it.





After dinner we caught a show called Believe, it was really good. At one point all the princesses showed up on stage and my sweet Oliver on my lap said “mom, Lily is a princess, we need to get her on that stage with them”. Oh my eyes welled.... I pray she is always a princess to him.


The trip was surreal. It was surreal to meet so many families that were with Make a Wish. It was too much to think about at times. My breath with hitch at times thinking about the future of all these families. The smiles on the faces of these beautiful kids. The happiness they all shared that trip. I just cannot express enough my deepest gratitude for Make a Wish and Disney and Southwest Airlines and Modji the limo driver. If you have money you need to donate, send it to IFCR (for research for Lily:)) but if you have more money to donate send it to Make a Wish! Fly Southwest! Visit Disney! These companies are making a difference and those are the people we need to be supporting!


This update took me a long time to write. There is a lot to share. A lot I am leaving out. I feel like I am leaving a lot unsaid emotionally and I think it is because it is too much to say. Too exhausting to think about. I will leave it at this..... each morning I go into Lily’s room I hold my breath until I see her breathing. I've been doing this for so long it just seems natural. I am unsure of her future, but I need to know that if one day I walk in and worst comes to worst, I need to know we gave her it all. We left her out of nothing. And this trip filled some void I think I felt I had in this area. Our life at home is therapy, doctors, seizures, worry, doubts, stress... this trip had NONE of those things... well a few seizures, but we gave her a week of love, enjoyment, water, dolphins, even a couple seizure free days. We gave her the best week of her life and by golly if we don’t have to pay for college for her, why not spend money each year giving her that week as long as we can?!


Thank you God for these blessings! These people who go above and beyond for others. Thank you for the week we had and I pray we get many many more like that one. You are better to us than we deserve.





Popular Posts