This time last year

This time last year I was driving, you daughter, to my Aunt’s house, knowing it was possibly the last time your extended family was going to be able to see you.

It was hard trip.

You didn’t feel good.  You had acquired additional medicines and equipment. Packing was a full time job and more then a chore. Yet it was important.  It was meaningful to sit with our family and be grateful.

This year, Katie Grace, we are home.  Your Rebekah is cooking up a storm  in our kitchen, and we are filling our home full of friends.  There is so much to miss without you this year, yet as I sit here snug on the couch watching the fall colors blow in the wind, I am nothing but grateful.

I am grateful for every Thanksgiving I had with you.  That in this world I had the opportunity to know you.  That I have stories to tell of you, like that one time we went to Aunt Nancy’s and we forgot the pole to your stroller that held your kangaroo bag with your food.  So we had to create something on Aunt Nancy’s porch with a nail.  Or that time that you were just irritated with everything and nothing I did helped, so your dad took you and were as happy as could be.  For that alone, that I could watch you love him. Even in your brokenness….everyone knew he was your favorite. I am grateful to have a history to look back on, one where I can talk about your love for your family, your tenacity for your destiny and your laughter. Last night as we walked through Target, grabbing a few items for today, we passed the freezer section, and your dad couldn’t help but say Katie Grace loved this part of Target.  Just like that you were there with us.  Walking that aisle.  Helping us prepare for this day.

We are going to sit down today to eat, and although I will not see your physical body at the kids table. I will know you are with us.  I will see you here and I will remember our history.  I will be grateful that we have a history.  That I have stories to tell and memories to hold.

“How precious are my children who remember to thank Me at all times.  They can walk through the darkest of days with Joy in their hearts because they know that the Light of My Presence is still shining on them. Rejoice in this day that I have made, for I am your steadfast Companion.”- Sarah Young, Author of Jesus Calling. 

 

90 days

Dear Daughter,

Today is 90 days.  It has been 90 days since I have wiped your face clean, kissed your soft porcelain cheeks, picked up medicine, changed a diaper, gotten you dressed, taken you to a doctors appointment, or held you…just cause.  It has been 90 days and I miss it all so much.

I heard a sermon the other day.  The preacher talked about sheep and how if they wander away from the flock, the shepherd breaks their legs, puts them on his shoulders, and carries them around feeding and nurturing them, creating such a deep connection that he doesn’t need to worry again about the sheep running off. You know what I realized?

I realized that your presence baby girl it made me like a lamb with the broken legs.  I wasn’t necessarily astray but I was a lamb who forgot the goodness of the Lord.  Who forgot how sacrificially he loves. The tenderness in which he serves hearts and the compassion he feels.  I had forgotten, who I was in him. I had lost my voice…..and then you came, in all your brokenness. My legs broke underneath me and the Lord so graciously placed me upon his shoulders and for the 4 years that you and I had, he fed me, he nurtured me, he created such a deep connection that I have nothing to fear.  I know that I know that I know that I know his voice. I trust who he is in me, and who I am in him.  Those years I spent on his shoulders, loving you, helped me remember my voice.

I wish I could do life with you.  That I could learn all I have with you heathly and whole by my side.  Oh to grow up and have the chance to be your best friend!  To see you mature and grow into the woman God designed you to be. Oh my heart, what a whirlwind of wonder and excitement you would have been.  A walking love tank outpouring you deep knowledge of heaven!

We didn’t get that though. Instead we had our race, and as 90 days is here, I am grateful for what we had. I am grateful that although you are not by my side, you are buried deep into the marrow of my bones.  Your voice is heard in all my conversations.  Your presence apparent in how I go about my life.  Your wisdom, your deep love, your tenacity seen in how I get up each day and face it.  My ability to turn into the Lord and lean into his chest. My ability to have my conversation, is a simple reflection of your strength to have yours.

I am your legacy.  You will not die again. To know me, is to know you.  Just like to know Jesus, is to know the Father.  You loved me, as he has always loved me, and that daughter will never die.  You came, my legs broke, and the shepherd graciously draped me over his shoulders; nurturing me into a place of totally dependancy.

It is 90 days today my sweet Katie Grace.  My pure grace.  I miss you beyond words, sometimes beyond emotion, and I am forever grateful for your presence. For your sacrifice, for your tenacious love that has changed the trajectory of my life.

Love,

Your momma with the mended legs and heart, who has leaned up her Fathers chest and started her conversation.

60 days

Today is March 1st.

It has been exactly 60 days since Katie Grace graduated.

And I am still a mess of emotions trying to figure out this beast called grief.

There is this song that has been on repeat in the car since the graduation. I just now watched the video, and proceeded to crumble into a teary eyed mess on the floor.  The song, is “I Lived” by OneRepublic.

Katie Grace dances upon the lyrics of this song.  Her sweet soft feet touching each word as they play into my heart. It has become “our song.” She came into this world and lived.  She could only do so much and she did it.  She did it with every piece of her.  And it called me out….to live….to embrace the marrow of life.  To take in the depth of each moment, let it be what it is and let it change me.

The bad stuff

“I hope that you don’t suffer but take the pain.”

The good stuff

“I hope when you take that jump you don’t feel the fall.”

The  scary stuff

“I hope when everybody runs you chose to stay”

The stuff that wrecks you to your core.  The hurt that hurts so bad you aren’t sure you can survive. That becomes an ache in your soul you don’t know if you can live with it.  The ache that makes you question the decisions that you made. The one that shows the jealously in your bones when mother’s embrace their daughters.  That one that screams unfair as other 4 year olds run and play around you.  That wants time to stand still, for the moving on to stop, in hopes that it means she will come back.  The one that knows that it isn’t going to end in a year.  That time won’t heal this wound, it may soften it but it won’t heal. Prom will come. Weddings will come.  Milestones will come and she still won’t be here.

“I hope when you fall in love it hurts so bad.”

And yet in the middle of the despair I feel her calling me to live.  To suck out the marrow of life.  To sit on this fence of duality.  Touching happiness and sadness at the same time.  To be exhausted and energized.  To want to hold on and let go.

To count it all joy.

Pace

I had a chance to participate in a intimate time of worship with a small group of people a couple of weeks ago.  As I sat there soaking in the presence of the Lord, I heard him say:

“Where you found my heartbeat in the cadence of Katie Grace steps,

you will need to lean into me deeper and hear my heart.

For in my heartbeat is the cadence of her steps.”

I have sat with this word on my heart ever since.  It just lingers over it sometimes soaking into it but mostly its like I can’t quite fully allow my heart to understand.  I don’t know why really.  I don’t know what I am afraid of.  I don’t know is actually my phrase of the past couple months.  I feel as if I am between two places…happy and sad.  Joyful and mourning.  On top of things and overwhelmed.  All the time.  I want so badly to just settle on one feeling.  Can I just be overwhelmed with joy that my daughter is set free?  Blown away by the mercy and grace of the Lord, taken over with his surreal and powerful love?  Without any of the sadness? Without feeling any of the loss?  Without aching to hold her one more time?  Without saying to Jesus I am the slightest bit jealous you get her whole and I didn’t?

I am afraid the answer is no.  I can’t have those things without also feeling the sadness.  I can’t be simply overpowered by God’s surreal and powerful love without the aching to hold my daughter one more time.  I can’t.  It is the aching that creates the understanding of how surreal and powerful God’s love is.  How can I be blown away by his mercy and grace if I don’t allow room for jealousy that He gets her whole and I didn’t.  How do I let him into my humanity, if I don’t allow myself to be human?  How do I lean deeper into his chest and hear his heartbeat, if there is nothing pushing me into it?

We all have things that push us deeper into the Lord.  Some of us revelations. Some of us experiences with him that create a desire. Some of us its just a simple gift. Mine has been suffering.  I have long understood the answer to all pain was the Lord.  Not that that instantly meant everything was healed….His goodness just changed the experience.  I can’t be on one side of the fence because this middle ground pushes me into him. It pushes me to seek after him and in this season, as he is writing the last chapter of Katie Grace’s story, it is his heart for me to push into him.

So here I sit in this place.  Firmly planted on this fence, slightly frustrated and learning to be open.  I am happy and sad. I am full of joy and mourning. I am on top of things and overwhelmed.  I am pressing into the Lord’s chest, leaning in as much as I can to hear the cadence of my daughters steps. To find my new pace.

Katie Grace Graduation

I am so sorry it has taken me this long to get back into the blogging game.  I have another post I am working on but I thought it would be better if I first posted pictures from Katie Grace graduation.

Not gonna lie it was a little intimidating putting together a memorial service or graduation as we call it.  There is so much you have to think about and plan.  It’s pretty surreal.  Suggestion for anybody out there facing a terminal illness and you are going to do a memorial service….plan plan plan ahead.  Decisions were hard to make in the middle of it all…and many times we just had to limit the decisions we made on a day-to-day basis.   In my humble opinion a simple plan is always easy to adjust and change but creating a whole plan can be a lot more work.

Despite our lack of planning I think the graduation ceremony was fantastic.  Once again our community just swooped us up in love.  My friend/boss Amy was our pastor she was someone who was there from the very beginning…a safe place I processed what my life was about to be that first month when Katie Grace was born and the same safe place I learned how to do life with Katie Grace.  She was the perfect person to walk us all through saying goodbye!  We had worship. My friend Michaelann read The Conversation, a post I wrote about what Katie Grace’s coming into the world was really about.  Charles and I said a few words. We had a few people share. We prayed.  And then we released 13 dozen balloons.  Our final congratulations and goodbye to an stunning and powerful little girl.

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To everybody who was able to make it….Thank you!

To those of you who have kept us in your prayers as we have ran this journey…. Thank you!

To Katie Grace I celebrate your race daughter.  You came into this world with a destiny and you fought every step of the way. I am honored to be called your Momma and I am humbled to be the one who was entrusted with your tenacious loving soul. I celebrate that we have an eternity together and our time apart while I am here on earth will seem as nothing once our feet are upon the same ground. You daughter changed my life in the most painful and glorious ways ever. I am better then I ever thought I could be….Thank you!

A few days in

I am snuggled up with my mens’..quietly typing this as their snoring fills the darkened room. If I were being super transparent with you all I would tell you….I expected myself to handle grief better. I keep thinking we all knew this was coming. I knew this was coming. I knew death and I would face off. So I tried to mourn when I could along the journey. I let myself cry the tears of what I would miss with her. Friends, school, talking, prom dresses, periods, weddings, and grand babies. I even allowed myself to mourn the things I missed on a daily basis…her voice, just waking up from a nap snuggles, sweet kisses, and baby giggles. I mourned the loss for Isaac as her big brother. It was as if I trained for handling her death (or graduation as we like to call it) like a marathon and when race day …..I froze. My mind is blank and instead of emotions going on automatic running like I trained them…I just stand there stunned by grief.

My mind sounded a bit like this this morning: I want to go to the gym? Nah I don’t really want to go to the gym. It feels weird to be doing normal life without KG here. I ache for a normal though. I should go to the gym. I don’t want to go to the gym? I will feel better if I go to the gym. Maybe I won’t feel better cause it still hard to be out there where everybody’s normal is normal and mine isn’t. But how can I make a new normal unless I do things. Gosh I just miss her. I feel so numb though also. But I miss her.

You irritated yet reading it? Cause I was super irritated doing it! In case you want to know…I didn’t go to the gym. I worked on getting KGs memorial set up. So bless anybody that talked to me this morning! You know who you are 😉 .

By 10:30am I was enough of a mess that when my mom suggested Charles, Isaac and I get out of town for a bit, it seemed like the only logical answer. We went North, where in a matter of minutes we were surrounded with trees much larger then us and mountains even bigger. Music played in the background.
“May we never lose our wonder.
Wide eyed and mystified may I be just like a child staring at her king.
May we never lose our wonder.
Cause you are beautiful in all your ways.
May we never lose our wonder.” -Amanda Cook Bethel Music Brave

We drove not talking but singing. My mind went silent and I saw my head upon the Fathers chest. I am a mess. Grief met me at the beginning of this marathon and I was not ready. I don’t know if I would have ever been ready. All that I planned for I surely didn’t plan for this. I took a deep breath inhaling his peace as I used to with Katie Grace and whispered “but I am not mad. May I never lose my wonder.”

And I knew my heart understood something. I may not have been prepared for grief like I thought I was. I may not be hitting automatic and running like I thought I trained myself but I am. Just like at the beginning of Katie Grace life there is not one part of this journey that has separated my heart from the Lord. He was my hope and strength in the beginning, middle and right now. I have not turned my heart, mind or eyes from him. He has sustained me and continues to sustain me. He is soaking up my processing, delighting in it because he loves how he created me. He aches with my aches, hurts with my hurts and he loves every inch of me! His only desire for me is to do the one thing I was doing…leaning into his chest and breathing in peace.

I am not doing grief well. However I am embracing Him well and in that I am embracing my precious daughter and her legacy well.

I am a few days in, a mess, and it is okay.

Community sweet community.

This past month has flown by and in a way my brain still can’t grasp it.  Between Thanksgiving, Charles’ Birthday, Christmas performances for a certain Kindergartener, and Katie Grace’s birthday our days have been full.  As the dust settles this week, I find myself overwhelmed with gratitude.  Throwing this birthday party for Katie Grace was kind of a big deal.  In a lot of ways, I have hid her away.  Only sharing her when my heart felt strong enough.  There are only so many stares that you can take, or ignoring, and purposely avoiding that your heart can swallow. Also the amount of work it takes to take her places is exhausting, the getting machines ready, oxygen, do we have meds, do we have enough snot rags, diaper bag full, warm clothes, cool clothes (more often cool then warm.) Then once we get somewhere, I have zero control over the lights, the temperature, the loudness, the things that bug her and make her uncomfortable.  I can help make her comfortable at home but not when we are out.  So, because it has always been Katie Grace preference to be home, and easier on my heart, we have just stayed home.

When Charles and I settled on throwing Katie Grace a birthday party this year, I wasn’t quite sure what I was getting myself into.  You know she doesn’t talk, walk,  smile (well smile on que), open presents, or blow out candles.  Her infectious laughter wasn’t going to fill the room, and squeals of glee over wanted birthday presents weren’t going to resound through the wall.  I had my concerns about how this party was going to go down.  Not even mentioning the practical things of her care. To say I was overwhelmed with the thought of it all was an understatement. How awkward would this party be?

I found myself compelled though.  I just couldn’t let the only party I throw for my daughter be her funeral.  If this is really our last year with her, I wanted her to be celebrated on the day she chose to join this world, not just the day she leaves it.  So we planned and planned, and on Saturday December 13th , we had an amazing day celebrating.  Our friend Michele, from North Carolina, who had yet had a chance to meet Katie Grace, flew out to be our photographer.  She captured some beautiful moments for us.

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As I sit here today typing, and looking at these pictures I am moved again to tears.  Not only was there not an awkward moment, but my daughter was held, talked to, doted on, and embraced with such tenderness.  She wasn’t looked at sideways or with question but she was embraced. Friends her age held her hand, and stroked her hair. They brought her presents, cards, and filled that room with such a tangible love. And when the time came to blow out the candles on her cake, she was surrounded by kids who blew them out for her. Where she couldn’t, they did.  This was the first time I had invited so many people so intimately into my life with Katie Grace, and without a skipping a beat they wrapped us up and loved us like they had lived in our house for the past 4 years.

On that day, my not normal special needs daughter was normal. Where she lacked; her friends had more then enough.  Her community, our community that day surrounded us, with God’s relentless and perfect love.  The love that knows brokenness but does not see it, that covers you with strength when you are weak. I know heaven won’t feel strange to her because she has already been enveloped with a heavenly love here on earth.

To our community thank you.  Thank you times a thousand. Her birthday party wouldn’t have been possible without you nor would it have been the same. To those of you who donated on her YouCaring page, her birthday was because of you, thank you.

A huge shout out to the www.thelittletumbleacademy.com for being there to entertain and keep busy a large group of children. Your service was outstanding and unforgettable. If you live in the Redding area these guys should be on your call list for birthday parties, or if you run a preschool or daycare.

Our next adventure begins this upcoming Saturday.  We will be packing up what will seem like most of our house and traveling to Southern California to see Aunt Jessie. Just like her birthday party, it is scary and overwhelming. And just like her birthday party, I feel compelled. Compelled to give her one amazing year on this earth.

Actions vs. Words….what’s more important?

“You know what’s more important than stuff mom?” Isaac asked

“What baby,” I answered half-heartedly as I zipped between the rows of comforters and pillowcases surrounding us.

“People, mom.  People that are like 3 years old.”

“What buddy??” I responded as my feet stopped moving and my eyes paused from glancing over everything.

“3 year-old people like Katie Grace….they are more important than stuff. So can we stop shopping and go home so I can take care of my sister.”

“Your right buddy lets head home.”  It was all I could say without tears.

For the second time in a week, I realized I just might be doing something right.

Let me explain.

You see most of the time it feels like Charles and I are walking around a dark room trying to find the dang light switch. Every once in a while we find a flashlight or the moon comes out and sheds some light in the room. Most of the time though, we are just making it up as we go. There is no manual to brain damage and even if there was, each child is so different it could only help so much. How do you raise not only your special needs, medically fragile child but also raise a perfectly healthy one?  How do you buffer the pain of it all and not hide reality from them?  Yeah, we don’t know either.  Except per the conversation above maybe we know more than we think.

The first time I thought I might was doing something right was when we had a parent teacher conference with his Kindergarten teacher last week, and she mentioned that he had been talking to her about his sister.  Charles and I were a bit shocked, we very rarely hear of Isaac talking to other people about Katie Grace.  Of course we begged her to tell us what he said. She told us, he basically told her that his “sister was probably going to die this year” and “that we got a new machine for her, it won’t heal her but it will help her.”  And I was again shocked. His awareness of what is happening blew my mind. He is only 6.  How on earth did he get such a good understanding?  How was he able to verbalize it so well?  He doesn’t mention these things to us!

Many times our conversations look like me stumbling through words to try to figure out how to explain to him what is happening.  Or me figuring out how to say it without profusely apologizing for this painful thing that I can’t control.  Sometimes it looks like me just smiling through the tears, wondering where the flashlight is so I can figure out how to navigate this dark room.  Not often does it include such a mature understanding as he gave his teacher or me that day when we shopped.

As I sat to write this I realized that although in the logical parts of our brains Charles and I have no idea how to do this, our actions are paving the path for Isaac.  The minute we invited the only one who conquered suffering into our walk so that we might also be conquerors, we became the best examples for our son.   It isn’t the correct words, the deep conversations, or the reasoning that is holding our son during this time, its our example. As parents, we want to be able to fix it, to have the answers so it doesn’t hurt, to be able to explain away pain….to help ease. We can easily spend more time figuring out how to help our children avoid pain…then teach them to deal with it.   All of this done with our actions and not our words.   When we put on our pretty faces and say everything is fine, when the tension or stress or fear or pain, is so thick it chokes all who are near, we aren’t teaching our children how to deal….we are teaching them to hide.  Let’s face these things.  Lets speak them out.  Lets be honest about them so that they can loosen their hold and not run the day.  You need 10 minutes to pitch a fit….take it…..and then move on.  Don’t divulge every detail but share with your children…..show them how to process the feelings of life and move on.  There are so many times I have looked at Isaac and just told him my heart is sad today. I am talking to Jesus about it because it will help my heart but today is a rough day.  The tears didn’t stop right away but through them I smiled.  I had sad feelings, which led to a little bit of a rough day, but I stilled smiled, I still loved, I still talked to Jesus, and that is what Isaac saw.

One day he will be the parent who feels like he is walking in a dark room trying to find the dang light switch. My hope is that he will already have the knowledge that it isn’t always about finding the switch but about finding the light.  In finding the light we realize….we just might be doing something right.

We have decided

Death is a word that is common in our house.

“When Katie Grace dies,”

“Momma is Katie Grace going to die.”

“We have to plan for her death”

“Gosh I don’t know how we are going to do this. Preparing for the death of your child is unlike anything I have ever experienced.”

We talk a lot about death in our home. It has kind of become our norm. We are growing weary though….so exhausted….of using that word.

Charles and I just have to wonder….is she really dying?

Websters’ dictionary defines death as: the end of life : the time when someone or something dies

: the ending of a particular person’s life.

Is Katie Grace last breath here on earth really the end?

We have decided that it isn’t. Death isn’t the end for Katie Grace.

Jesus conquered death when he died on the cross. He took the power out of it being the end of someone’s life.  He gave death a whole other meaning.  Death has always carried this level of sadness….a power almost. It is something that is avoided, feared, mourned, and hated. Jesus redeemed all of that.  He took away the power of what death does and we are missing a piece of the Kingdom when we don’t make peace with what He.  He didn’t empower us with only a physical power over death but with an emotional one.  He gave us the ability to be sad and rejoice at the same time.  He gave us hope admist the sadness.  He opened the doors to Heaven, showing us there is no end for those who know Him.   It’s like running a race…..when someone crosses the finish line we rejoice. We clap, we say congratulations, we jump and scream….we rejoice.   We don’t cry, or offer our condolences….we don’t mourn that the race is over…..we rejoice.  In a way death should be treated much the same way.  My Katie Grace is running a race…she is on mile 20 of a 26.2 marathon and when she crosses that finishing line. I have decided to REJOICE.

We have decide to call it a graduation.  Katie Grace is simply graduating from her place here on earth..to her place in heaven.  Her life isn’t over….her purpose isn’t over.  The only thing that ends is the limitations of her physical body. When her race is finished, we will lay her physical body to rest.   It’s not that we won’t miss that physical body.  It’s not that we aren’t sad or aren’t  going to want her back.  We will feel all of these feelings, we will weep. We will want one more day, one more moment, one more sloppy smile, one more pitiful cry, one more moment to swing, to snuggle. We will want.

Then we will decide to rejoice.

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