Sunday, March 11, 2018

God's Plan

Dear God,

Thank you, please, please, please, please….
please , please, please, please..
In your holy precious name,
MY will be done.

Oops I mean your will. Your will be done.

But God, can you please, please, please match yours to mine?

I don’t actually really trust your will. Your will scares the s*#t out of me. I’ve seen your will. I’ve seen it go seemly really bad. I think if you just see this from my perspective you will see that MY will be done is a whole lot better than yours. I mean, just this time. Ok. Please.

Living in fear in Arizona

Hi… I am Kim and as much as I love Jesus I have realized I don’t trust him very well.

This revelation has come to me, thankfully, steered by a good friend who isn’t all about chicken soup and snuggly blankets. We had a recent conversation and it went a little like this.
“Kim, what do you know”, “I know God is good. He loves me. He is protective of me. I am cherished. These children are his and loved and cherished and protected.” “Ok Kim, so why don’t you trust a God that you know all that about” “because trusting him doesn’t mean things will end how I want them, I mean look at what we’ve gone through with Lily” “So knowing all you know about God you think your will is better than his” ….. “Uh…” And it went on from there. From a place of love and a place of a different perspective we continued to talk.
Tears pooled my eyes as I began to understand my distrust with my God. MY God. Whom I love. Whom I crave his closeness and grace. Whom I hate missing a morning coffee with. I don’t trust him. Because he had done me wrong.

I spent years begging at his feet for a different outcome for our baby girl. His will was different than mine.
15 years later my prayers have changed for her and of course our acceptance of her is clear as a bright sunny Arizona day, but my heart will always be scarred because of her. Because her life is hard and I hate that. Because her life was not how I envisioned it being.

My will for her was not met.

But God’s will was/is. And it is good.

But if we had this talk 15 years ago I’d punch you in the face. I would have at least really wanted to. Because I was supposed to trust a will that leaves our daughter unable to speak, walk, feed herself, and be reliant on us for everything she needs. That she would have to undergo awful procedures and surgeries and diets and take disgusting meds for her entire life and that is a good will of God. That doesn’t sound good. Or fair. Not cool, at all, in the least. But it’s his and it is good.

And as the years have gone by and we watch Lily’s growth and know her and love her and we see the lives she has touched and changed, ahem most assuredly the ones closest to her, i.e. me, we see a goodness that shines through her. We know we weren’t punished and Lily had to suffer. Not at all, we are able to shine God’s love through a girl who is clearly blameless in all ways. We have come to love and honor that we get to serve her. Care for her. Silence our own selfishness for her. Because she is worthy of it all. She didn’t become who we planned. She became eons more. She is a gift and we are the lucky ones.

God’s will was done and it is good.

As I have been in this waiting period and spending time in deep reflection on our life with Lily I have had two out of the blue moments with her. I got a facebook message the other day from someone who taught her Sunday School in the 5th grade. They moved away and she said she always has Lily on her mind. How Lily was such a blessing to be a part of their class and she just wanted to know how she was doing. She’s great, I wrote, and thank you for reaching out and reminding me once again how she is a life changer.

And yesterday, at Oliver's skate competition, Lily was being pushed by Grandpa Steve and a homeless man wearing a suit with slippers and looked like an arty professor, clean and kind, and carrying all his belongings in a cart on his bike came over to Lily and Grandpa Steve with tears pouring down his face he said “God bless you and her”. He said his son was killed in Afghanistan and he used to serve in the Navy and he wanted Lily to have his Navy key chain he’s been carrying around for many years. Guys! Grandpa Steve said his tears were just pouring out of him. We gladly put that key chain on her backpack and will always think of him and his son and again be reminded that Lily is seen, her presence is known and God’s will is good.

Will it take me until eternity to fully grasp his will for her? Yes. There are days I want to just talk to her and I can’t, and that will always hurt. Reminders like, for instance, that she should be getting her drivers permit this month, sucks. Always. So even on my best days I am working with, and will always be, a scarred heart.

God’s will is a hard pill to swallow when we have seen it at work and not appreciated it fully. And might not until we are no longer on this earth. There is only so much we can see from our perspective. I look forward to that day I can see it from his.

People still get cancer, people so very close to me get cancer, so many children are in foster care, babies sometimes die even after we all pray with intensity that his will does not take this precious baby from my sweet friend.

So much on this life we will never fully understand or comprehend until we are face to face with him. The king of all kings. The alpha and the omega. I picture his big, gentle hands on my face and explaining to me my life. The ways my road went, some sweet, some too hard, and see it was all good. His will was good.

But until that moment I still have to live and love and flourish on this earth, I want to slay these years, not merely survive them. So how do we surrender our will to his. Even knowing it’s good. But also knowing it may not be ours? That’s the struggle.

I never used to have a problem going to the dentist until one day he put that novocaine needle right into my nerve and I almost flew out of my seat. I thought I heard and saw the color red (yes that is what I said) and I would never be the same. Do you think after that I can sit in a dentist chair and get that shot without my heart palpitating? Heck no. I’m like a panicked goat. Please don’t hit my nerve, please don’t hit my nerve, I beg. Out loud. Like a panicked goat. One panicked goat that can speak. Did my tooth go numb and he fix my tooth? Yep. Do I hate going to the dentist now? Abso-freaking-lutely. Once bitten twice shy, right? I do not trust anyone with a needle in my mouth. I don’t. It’s created an anxiety in me that’s hard to go to the dentist now. But the Dentist ain’t God.

God is not the dentist. God gives us promises that are true and we can cling to, like for instance in Romans 8: 28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

He promises us good if we trust in him. And so we try to trust him. And everyone says, trust God. So I try. But I am so often left unsure of what that truly looks like. How do I hand him this heavy burden and walk away from it? Like it’s easy to say thanks, here you go, but then a few minutes later say Umm… I’ll take that back. You really aren’t able to control the situation like I am in my head. Like a raving lunatic. That’s working better than trusting you on this. Actually God I choose my crazy over your peace.

What? Why?

And that is what I am practicing right now. Dropping that load off and walking the eff away. Sorry. I just need to walk away and throwing a little good girl with a rebel spirit “eff” in there feels better.

My friend Bob encouraged me to confess my rebel spirit.. And I have to be honest, I liked that I have a rebel spirit. I like that I stand firm and I have a lot of strength and it takes a lot to get me down. I am thankful for that rebel spirit I was given, but I also have learned it is a weakness in my relationship with God. I can’t rebel against him and his will and still say I trust him. I have to be all in or not. So while I will keep this rebel spirit, thank you very much, I will also continue to learn to where it is best used. Fighting wills with my God is not where it is best used. So I, as I was also encouraged, spent some time cuddled into God’s lap and confessed all this to him. I told him about how I don’t really care much for his will sometimes. Even when I KNOW he’s good. That I struggle with trusting his will and that I choose to trust him anyway. I am sorry for my disbelief. I am sorry for my inability to give it to him and leave it with him. And he listened. And I was finally able to take in this enormous peace that I have been begging for and unable to receive lately.

I have been asking for peace and answers and have spent a great amount of time in prayer these past few months. I even fasted for a day to try to clear my head. But I was so overwhelmed by my fears of his will that I heard nothing but the tasmanian devil running rampant in my head. Of course I couldn’t hear him amongst my chaos. I couldn't hear my own kids yelling for me to look at them. How could I hear a tender whisper from God?

So I went seeking for guidance in this waiting period of our life. A huge waiting period that at the end will determine so much. It’s not a small thing. This is a big thing. And that guidance took me on a wild adventure in my own head and heart and relationship with God that I thought I had and that I thought was good. I am learning to trust God is not just a thing people say and you just do. It’s a practice. A practice I am allotting myself a lot of grace through, it is saying here is this burden and letting him have it and repeatedly throughout the day when I start to take it back from him I say NO and often out loud, I am sure I am all kinds of crazy, but I say NO! I say thank you for this time. Thank you for the laughs. Thank you for these sweet chubby hands we are responsible for right now. Thank you for the food we have to feed them. The diapers we have to change them. Thank you for all the funny things they say and do that give our whole family joy. We laugh so much in this house. Thank you for that.

And repeat.

And as my friend Bob says, “turn your worry into worship” and I am. I am each and every day. Many times a day and it is working. God has filled me with a beautiful peace. He’s also reminding me that his will for Lily is good. He knows me. He knows that is my achilles heel and he is so tender with me and these reminders are like honey from the sky. Minus the bees.

If you are struggling with a big waiting period right now I deeply encourage you to also hand it to our big God for real. Like hand it the eff over. And practice over and over again leaving it with him. He’s capable and wanting and just waiting for you to do so. Fear can so easily drive us straight into a wall and we crash and burn. Over and over again. Fear gets us nowhere. And hurts. Peace from him gets us everywhere. And it's peaceful. Precious God given peace. I'm choosing peace.

Wednesday, July 27, 2016

Baby A

So my last post was in anticipation to a huge life change and somehow that change has come. Actually 6 weeks ago.
I outta post more often.
So before we were even licensed to foster I got an email asking if we'd take in a 9 month old baby boy. I said, (with my heart beating out of my chest thinking it's too soon) "sure, but we aren't licensed" they said they knew and we're working on it. That was a Thursday, the following Monday I had our licensing worker inspecting our home and meeting us, Tuesday we had our license and Wednesday we had baby A. in our homes stealing our hearts at first smile.
He wasn't an abused baby, he didn't come with lice or ringworm, he was actually Gerber baby squishy delicious and has a heart breaking smile that I know will tear us all apart.
What are we doing? How can I not ask myself that question every day as I rock him, feed him and stare into his almond shaped eyes. Every day that he throws a fit and demands the only cure is me holding him. Every moment he yells his sweet baby yell just because for 2 seconds our household isn't totally focused on him.
What are we doing?
Multiple times a day I am told by others "I could never do that, I would get too attached".
Funny thing is, we're attached. We are doing this and we are attached. Probably too attached. Like so many fear. We were attached the moment the doorbell rang and I opened the door and my heart and we were all goners.
We are all attached and he is attached to us.
In the past 6 weeks he has grown and learned so much.
In the past 6 weeks we have grown and learned so much.
I've learned about his parents. I have learned about a broken system. I have learned, even more so (?) just how important it is to advocate for children who have no voice.
I watch a lot of reality TV. My favorite is the Bachelor and Bachelorette. I've watched since Alex. If you know who that is fist bump.
As I watch that show I listen to them whine about how they hate to open up, how they don't want to get hurt and so many are sent packing because they didn't open up during a group date with 8 other girls vying for one dudes attention (ok maybe not the best example of where I am going) but the point is people sign up for this then refuse to give into the process because they are so scared to get hurt.
I don't like to get hurt. I am the most cautious person on the planet. I like fun as long as it's safe. But I can't refuse to do the things I am asked to do because I am afraid of the heart break I will experience. I can however refuse to jump out of a plane because I like my body in one piece.
Would we keep baby A if it came down to it? 100% without a shadow of a doubt! But his case plan is reunification and we respect that. We understand if his parents can show they want their child back and will take care of him the way he deserves then we will support that. That is what we signed up to do.
We are to be a safe harbor for the child while their parents get safe.
But our safe harbor has lots of feels though. It's not a place of robotic mechanics. It's full of hugs and kisses and giggles and snuggles. And unfortunately in living that way we are setting ourselves up to be hurt. We know our hearts will be broken. Does it make it easier? Maybe. Maybe if those contestants on the Bachelor went in saying I want to have fun, let my guard down and be prepared for the hard landing, maybe they wouldn't be in the limo sobbing that they will never love again because it hurts too much. (And PS they will try to love again when they are asked to be the next bachelorette OR get to be on Bachelor in Paradise and when those don't pan out they will go back to their old college flame, get married and have a few kids). So being prepared may help? I don't know.
I don't know anything. I just know for now we have baby A. in our home and in our lives and it has made our home a happier than it already was home.
I know that I pray and sometimes I have to remind myself to pray for the best outcome for him. Not for us. I pray for his parents. I want them to be safe and healthy. I also pray that if they can't be, let him stay with us. It's hard to remind myself to stay out of the lane of my own selfishness. Remind myself that we want the best for baby A. We want his life to be fulfilled with happiness and most importantly safety.
I constantly pray, "God you know us. You know our hearts. Protect us and guide us". It's all I can do when I find us in the middle of a big ocean and the waves are rocking us side to side. God placed us in this boat. He will hold our hands while we rock. He will comfort our fears so that we can enjoy the ride for as long as it takes.
I have no idea how this story will end so all I can say is to be continued....

Thursday, April 14, 2016

The Cat's Out of the Bag

About a year ago, long story short, we rescued some kittens. Little, dirty, angry kittens.
My sister and I split them up, she took two and named them Jack and Jill. We took two and named them Cinco and Mayo. Give you a hint what their "gotcha" day is ;)

Rescue mission

I love cats, I do. I can watch cat videos on YouTube all day long. We always had them growing up. My dad would say things like "I'm allergic", or "they cause my asthma to get worse" all those little excuses for us not to have them, but they never worked. We always had cats. 
But myself as the mom of my family we had gone many years without a cat. I had become OK with the no cats thing, no litter boxes to clean out. No cat food to buy. I kinda have a lot already in my life with 3 kids, a husband and 2 dogs so yeah I was really OK with the whole no cat thing and totally honesty here, I wasn't "all in" when I brought these guys home. I wasn't super excited we had kittens, I felt dread that I had 2 more responsibilities to add to my plethora of responsibilities. 
Why did you bring them home then Kim? Well because my heart is often way bigger than my brain. It's a thing.
But nevertheless I brought them home. I bought the litter box, I kept them in our closet because they were so used to a tiny space they didn't walk right. They cowered with each step. They hissed at me all the time and I thought I was going to surely die when I tried to bathe them. They weren't very nice. The kids couldn't get too close to them and they thought this whole kitten thing was a bust. They were so cute, but man.. not nice. But we trudged on. Mayo slowly started to warm up to us, enjoyed playing and eventually snuggling. Then there is Cinco. 
Cinco is probably a cat that Satin had to let go.
A week into these little animals in our home I got them to the vet. 
Vet mentions some patches of missing hair and says something about ringworm but has to check a hair sample. Will take a week or so. I think oh like worms. Cat will need a de-worming medication. That's normal with strays I'm sure. Note this was all internal dialogue. Had I said out loud my thoughts the vet would have said "Oh no.. ringworm is a fungal infection that will eat you and your family of of your home... YOU DO NOT WANT RINGWORM"
A couple days later my very good friend and neighbor calls me, she was just leaving the pediatrician with her daughter who was just diagnosed with ..... ringworm! Her Pediatrician asked my friend if her daughter had contact with any feral cats and what do you know.. yup she had Mayo all up on her with snuggles. Sweet little P had ringworm on her face, hands and neck and WAS DUE TO BE A FLOWER GIRL IN A FEW WEEKS. After that call I went straight to Google to see what the heck is ringworm and what do I see? It's not a worm! It's probably worse, it's a fungal infection that won't go away. Now knowing what I was looking for I noticed Andi had spots on her hands and I then I saw a spot ON MY NECK! I want to add my friend was so super cool about the whole thing and if it could happen to any of my friends kids, I am so glad it was hers. BUT still mortifying to say the least. And now we all had it. As a few days later Oliver woke up covered in spots.
As fast as you can say worm I was on the phone with our vet to say no need to wait for the test, we all have freaking ringworm. The vets office said I needed to bring them in weekly for sulfur dip baths for 6 weeks! It was $80 a visit! I went online to try to remedy it myself but realized I would be giving them baths every couple days and there is no way I would survive bathing these crazy cats so I sucked it up and took them in for 6 weeks to get these sulfur dips. 
They came home so stinky. 
One time I threw a towel they were on in the carrier in the wash with other towels and all the towels reeked like sulfur. It took so many washes to finally get the smell to go away. So we all had ringworm on our bodies. The dogs even got it. I had to throw things away, I had TO WASH EVERY SINGLE PIECE OF CLOTHING I HAD IN MY CLOSET THAT THE CATS TOUCHED... EVERY SINGLE PIECE. I have a lot of clothes. I vacuumed like never before and daily. I bleached what I could bleach and used apple cider vinegar on what I couldn't bleach. And we had towels that smelled of sulfur. 
And not to mention we were on furlough from our friends. No one wanted to come over. It was like our home had the plague. Our home did have the plague.
It was awful. So seriously awful and I am not kidding, it took month, MONTHS to finally feel free of the ringworm. 
And all this for cats we really didn't want, we certainly didn't need, and one of them I am pretty sure is devising a plan for my death. 
But here we are nearly a year later and our family, EVEN Andrew, LOVES Mayo. He snuggles, he follows us around, he loves to be held and pet. He likes to go inside and out, but never goes far. He is the sweetest cat and we are all in love with him.

Cinco, well he's OK. He and our little dog Teddy love each other, so he does have some feelings. I guess.

Lily and Mayo (after ringwormgate, for the record Lily never got ringworm)
A year ago I went really unsure into something that completely turned our life around for awhile. I was worried I just had more responsibilities by adding two cats, but I added huge expenses I wasn't planning, super annoying itchy spots that seemed to never leave, embarrassment for feeling dirty. Andrew said when he was a kid he wasn't allowed to play with a kid with ringworm and now we had kids with ringworm. It really was an awful experience. An awful experience we can kind of look back and chuckle about, because I mean if it were a dog we did all that for he would be all thank you. I love you. You are my world. But we did all this for cats. Cats that are like yeah.. so what. Feed me. Pick up my feces. Open the door. Pet me. No don't pet me. Pet me. 
So why share this story? I mean who looks like the dummy here? Me, of course. Me who takes home kittens I don't even want and then get caught up infecting our whole home with ringworm and then spending our hard earned money on getting rid of the ringworm. It sounds insane. I thought I was going to go insane. But I kept taking them to their appointments. I got them neutered. I got them immunized. Why. Because they have beating hearts. Because without us they are helpless. Because they became OURS. 
I can't help but look back at all this and wonder if our God has a really odd sense of humor. A strange way of opening our hearts and worlds to things we never expected. 
I wonder if all that happened so we can take a new step into a whole new direction that is so frightening. 
Andrew and I are half way through foster care classes. If all goes well and on track we could be licensed and fostering by this July. 
Why? Because the numbers of kids in care is astounding. Because we own a house bigger than we need and have an empty room just sitting there waiting to be filled. Do we have a lot of responsibilities with Lily and Andi Jane and Oliver? Yep. Do we still add more to our plate so a child can not sleep in a shelter? Yep. Do we have any idea what we are opening ourselves up for? Nope. Do we let fear make that decision for us? Nope. 
Am I scared? Holy crap yes. I am in tears as I write this. Because I like that our youngest is 7. I like that we have passed the baby and toddler years and as hard as it is having a tween right now emotionally, I remember how hard it is physically to have a baby/toddler. Actually I don't really. I think I blocked it all out. I like how neat our house stays now. I don't really care to be anymore inconvenienced than I already am in my life. I honestly don't really have baby fever either, this isn't for us. This is for a child who wasn't lucky enough to be born into this world by an organic only eating mom who plays by the rules and does everything to keep her child safe. These classes are teaching us stuff I never have to see or even think about in our safe Gilbert, Arizona bubble. The statistics are awful. Heart breaking. Stomach aching. Our goal is to keep a child safe in our home while their parents do what they have to do to make their home safe. Is that how it will go? I have no clue. Could the road lead to adoption? Maybe? Do I want that? Not necessarily. We don't know.
Sometimes God says take this step and you do it. It's scary. I keep feeling like if I take my eyes off him for one second in this I am like Peter sinking into the water. I can think of all the reasons to say no. I have a lot. I say them to myself all the time. But what if we just keep saying yes anyway? 
Jesus said take care of the widows and orphans. That's what he said. He said to love others as ourselves and even if that means bringing in ringworm, or lice, or numerous sicknesses and kids in care are under extreme stress are often filled with sickness... even then? Especially then.
I am sharing this because we want support from friends and family. I realize people will say but you guys work, have Lily, etc, is this really the right thing? Best thing? Do you know what can happen?? Yes. No. Maybe so.
One step at a time with open hearts we say yes. 

Please be in prayer with us. We want you to be on this journey with us. 

Thursday, April 7, 2016


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.

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