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.

Perception of Expectations

Do you ever have those moments in life when you think people expect you to think or feel a certain way?  Like somehow you “know” what is expected, so you try to be that.  Then you become awkward inside because you don’t actually think/feel those things and instead of just stepping into what you do think/feel you kind of numb your feelings.

Oh you don’t?  Maybe it’s just a me thing.  It happens to me every once in a while and it happened with processing this grief.  When Katie Grace graduated, I thought that people expected me to be heartbroken. Like gut-wrenched, heart ripped out broken,  But I wasn’t.  I didn’t realize I wasn’t.  It took me almost a week and a half to process, and this is what I discovered.

I have been gut-wrenched, heart ripped out broken for the past 4 years.  I lunged into grieving while Katie Grace was still with us. I knew her season with us was not a long one. I wanted to breathe in every bit of pain and suffering not just so I was able to embrace life with her but also so that come the day of graduation, I could rejoice. I craved being able to celebrate her Homecoming and not just mourning my loss.

I am not sad my daughter is running wild through the fields of heaven.

I am not sad she is painting the skies with Jesus.

I am not sad that she is fully restored body and spirit.

I am not sad that she is praying for us and cheering for us while we run the rest of our race.

I am not sad that she whispers words of strength to me in my prayer times.

I am not sad that I have gotten to see her in my mind’s eye in a way I wasn’t able to for the last 4 years.

I am no longer gut-wrenched heart ripped out broken.

Please don’t misunderstand what I say…I miss her like crazy.

I miss her smiles that she so selectively gave out.

I miss her sweet soft cheeks.

I miss her red hair.

I miss her presence in our life.  She brought such a love to our home by simply being.

I miss her little sounds.

I miss watching her brother love on her.

I simply miss.

But I am not sad.

Again please don’t misunderstand, I don’t have this all figured out. This grief thing is weird.  Its like I am on the inside of huge emotional snowball as it rolls down a hill and I have no idea what feeling I am going to have at any given moment.  I find myself having feelings I didn’t know you could. It’s just that through it all the standing feeling, the one holding me through this snowball of emotion is not one of sadness but one of  joy.

My daughter came into this world to be a conqueror of pain.  To walk through suffering with purity (meaning of her first name), grace(her middle name), and joy.  I want to uphold that.

I want to reflect what she has taught me.  Suffering doesn’t kill us, giving into hopelessness, despair, and anger…that’s what kills us.

It is good that I miss my daughter and it is good that I rejoice over her graduation.  The minute I laid down my perceptions of others expectations, I walked into a freedom.  I stepped back onto the path I was running with Katie Grace.  I stepped back into conquering pain.

And I heard her voice say “Good job Momma. Good job.”

 

 

2 days, 2 weeks, 2 months…..

When we left the hospital on January 15th 2011 a month after Katie Grace was born, the doctor basically said “two day, two weeks, two months or two years…she will show you what this will look like.” As Charles and I process this whole lung business…I find the thing that we are saying most to each other is:

“One month, two months, six months, or a year….she will show us what the rest of this journey will look like.”

Her life is like the most beautifully written book. Her beginning was traumatic and dramatic, there has been character development, a story build up, and as we come into this next season a conclusion.

You wouldn’t know by looking at Katie Grace how bad her lung is. She is so present in this life. Her eyes are wide open, she is alert to everything around her, and she still flashes us those smiles now and then. Its hard to imagine that in a flash that lung could grab an infection or it could collapse altogether spiking her CO2s. And it is hard to guess any kind of a time frame. She has lived with and managed this lung for 5 months pretty impressively. We have the possibility of getting home with a by-pap machine and it could help her, it could possibly even clear some stuff slowly over time. We simply have no way of knowing.

All we really know, is that we are going to keep living. We are going to keep kissing her face, asking her to do trips with us, snuggling her, and enjoying her. We are going to continue to wade through the grief….every time it starts to creep up on us. We are not going to stop loving or living….whether it be one month, two months, six months, or year.

Friday

It’s Friday morning and I am sitting in a hospital. In front of me is a beautiful red headed baby and a handsome man both sound asleep. To the left the sun is making its glorious rise.

I had a feeling our pulmonologist would want to hospitalize us. I had resolved in my heart and with Charles that he would have to give us an extremely convincing reason to do it.

He did.

He really said we had few options one of them being we could go to the hospital and have them do like a lung cleanse and place her on by-pap and see what happens from there. That was our best choice so Charles and I took a minute…talked it over and decided. Let’s see if we can clear this lung with a cleanse and then help her with the by-pap.

We get checked into the hospital and it turns out that it’s not that easy. Katie Grace actually had a lung cleanse 5 months ago and it didn’t do much. And then we looked through her collection of x-rays here at Sutter with the doctor and we see how much her lung hasn’t changed. How they have used almost every machine they have that would help that lung open up and still it barely budges. Charles and i know what we are looking at. Katie Grace has already told us…The Lord has already been holding us.

Last night we put her on the by-pap machine….just to see what it might do. She already got her picture taken this morning so we can see those insides. We will know by rounds today what the rest of this season will look like. We could be going home with a by-pap today or we could be staying and getting a good lung cleanse. All depends on this mornings x-rays.

The by-pap and lung cleanse won’t change anything. They can’t keep the lung from filling with fluid or whatever it is in there. They can’t reverse brain damage. They can make our girl a little more comfortable….they could be an assist to help her for however much longer we have.

We are hopeful not because of machines or doctors or even the breath-taking tenacity of a little girl. We are hopeful because we have a knowledge that supersedes life….because we don’t fear death…because at the end of the day we chose joy amidst suffering.

Thursday

If you have been following my blog for any period of time, you probably know how much I don’t prefer Thursdays. It nothing personal on my end, well maybe it is. We just don’t seem to get along. Thursday seems to be the day that I have the most marvelous and saddest experiences. This Thursday coming up doesn’t look much more promising.

I have put it off and put it off but we have to make the trip down to Sac to see Katie Grace pulmonologist. We simply aren’t winning the war with her left lung. To be honest we are at a loss on some level. The hospital calls it pneumonia but she has no fever and a normal white blood count. That left lung though….it is still the wrong color on the x-rays. If you didn’t know, lungs should be black on x-rays. They aren’t a solid matter like the heart….they are this elaborate design of mass that allows so much oxygen to move through that they don’t look like a solid mass on x-rays. Katie Grace left lung, is white. Its been white since she collapsed it 5 months ago. I don’t know that we have ever had a leg up on it.

This Thursday…tomorrow……we are facing the what are we going to do doctor. And I am scared.

I am scared of the options he is going give us.
I am scared of the choices we have.
I am scared of him wanting to hospitalizing her in Sac.

In the same breath I am ready to hear my options. I am ready to make a plan about how we are going to take care of her for however much longer we have her. Charles and I haven’t had a ton of time or space to connect about our plan. About what we want. So tomorrow, as we make the early morning drive, drinking our coffee, letting country music quietly fill the background of our conversation, we will talk. We mostly likely will cry, we will relish in how much we love Katie Grace and we will make a plan. We will breathe in and out. We will find Jesus face and his heart. We will know we are seeking the best we know for her. That we have listened to her and what she is asking, and we are working on making the best plan possible. Then we will sit in stillnesss, preparing ourselves for what the doctor will say.

Then I will remember it’s Thursday. My day of saddest moments and my day of most marvelous experiences.

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