11.19.14 So This Is Love

"Love her."

This the specific direction I'm given.  When I am at a loss, desperately in prayer, wondering how to mother Aimee, these are the words I hear. Yet, I still get bogged down. What does this mean? How can I do this grand task? What big gesture should I perform? 

Then, as I go about her cares, a song comes to mind. I continually find myself singing it while I change a diaper, while I clean the suction machine, while I respond to middle of the night alarms. 

So this is love

Mmhmm mmhmm

So this is love

So this is what makes life divine.

I'm all aglow

Mmhmm mmhmm

And now I know

The key to all heaven is mine.

My heart has wings

Mmhmm mmhmm

And I can fly

I'll touch every star in the sky.

So this is the miracle 

that I've been dreaming of

So this is love.

Simple song from Cinderella, but it comes to my heart and reminds me that my divine task is to touch heaven with simple, daily care.

11.15.14

24 hours with no mystery bleeding! Thank you for praying!

11.8.14 Clinical Update

Aimee has met with numerous doctors since I last detailed an appointment, but there are two clinics with significant findings.

As I have mentioned before, Aimee has been having significant desaturation episodes during sleep which her bipap machine has not been relieving. The doctors have attempted different pressure settings and an updated mask. Next we are going to try a new piece of equipment that is more sensitive. Thankfully this has just been approved through insurance. As soon as we get that adjusted, we will take her in for another sleep study. Her Pulmonologist team are all concerned as these episodes were not happening during prior studies. We may need to consider another sedated MRI of Aimee's brain to determine if there are signs of degeneration. 

Another continued challenge has been with bowel movements and the GI clinic. After many attempts at typical laxatives, enimas, and stimulants, we are finding that Aimee's brain is just not signaling her body that it needs to be emptied. Her muscle tone being low also makes it very difficult to maximize any urges that she may have anyways. We are currently implenting a new regimen that will take about an hour each evening. It includes catheters, homemade gravity enimas, and time on the toilet. It is that last bit that is the tricky business. Due to added volume with the enima and the more ideal position of the toilet, we have to find a way to have her sit on the toilet for 30-40 minutes each day. Honestly, this is just crazy, but, Ed and I are going to attempt making a contraption to help hold her. :/ 

I am pleased to report that Aimee has been incredibly healthy otherwise, aside from numerous UTIs. Her immune system is greatly improved this season thus far. Such a blessing! 

Plus, she has been getting lots of snuggle time lately! Sure love these dears. 

11.13.14

A day of clean up and scary looking spills. 

Aimee has been a little sick, but today she has really frightened me by choking on blood multiple times, as well as, having blood in her stomach contents and covering her sweet face. All her vitals are decent and I am hopeful that she is just having nose bleeds. Poor girlie! Please pray for the bleeding to stop. 

10.17.14 Moving On

Tonight I am writing my last post to you from this home.

8 years ago, Ed and I bought a questionable house on Bartl Street. We poured ourselves into it, learning together as we planned, plotted, and eventually completed our home.

2006: The house we found; 2014: The home we built.

Since that day, we have brought 3 new lives into our family. Each one born here in this redeemed house.

Now, we are preparing to close the door on this chapter with some sadness. It was here that we learned how to love.

 

 

Thankfully, we are taking all these lessons, all this love, and all these sweet little lives with us. We are hopeful and looking forward to a bright future in a new home.

Farewell Bartl Street!

PS. Much love and gratitude to Erin Cox Photography for catching photos of us in our native environment. They will be cherished!

8.28.14 Mostly Adjusted

Sometimes there is an unexpected land mine. Something you wouldn't expect to hurt, but you step forward and it aches like a amputated limb, longing for what is not there. 

Today's land mine was a letter from the principal of the Clearlake elementary school. Aimee and I came home from a drive to Seattle laden with a heavy bag of meds. We were having a lovely drive. I was enjoying listening to a book through Audible. Aimee was peaceful. Then we stopped for the mail and there was this letter. 

It is a simple sheet. One side is a list of school supplies and the other instructions for Aimee settling in to the kindergarten class. Somehow lines were crossed and Aimee is expected to walk across the street next week to join the other cute, nervously excited 5 year olds. 

It shouldn't bug me. If I turn over the paper and just see the supply list, I feel fine. The letter side, with Aimee's name, makes me dizzy. 

There are two worlds. The one where Aimee doesn't belong and the one where she might have belonged. Yes, I know, those are the same world. As long as I watch those sweet babies walking to kindergarten outside my window, I can smile at their joyous chatter. It is when I "see" Aimee there walking beside them... Stop I can't think about it any more. The world hasn't ended. I know Aimee is beautiful as she is. But understand, it isn't all well. Sometimes, it is crushing. Sometimes, there is a crack running through my heart. Sometimes, there is a land mine and what isn't there hurts.

8.7.14 What Tomorrow Will Remember

I am here, next to Aimee. 

She has had a sad morning. Probably hip troubles. Some adjustment, some pain medication, and a snuggle in mommy and daddy's bed seems to have calmed her. I am holding her soft hand with her long, sturdy nails. Admiring her smooth skin. Watching her head bob around, dancing to some unheard beat. Her eyes are glancing this way and that. She sighs.

I cannot convey to you, or to future me, all the details of this moment. I can take a picture. I can find words to describe. But how can I capture the feeling of my cheek against hers. The smell of her. The sound of her breath. The pattern of movement. I am desperate to catch this moment even more than with the boys, though I feel it with them too. Wishing I could always remember the feel of a round baby nuzzling me or a sticky, small hand leading me. 

In the end, all I can do is be present. I can laugh and sing. I can savor. I can enjoy this day, not worrying what tomorrow will remember. Not anxious of what obstacles lie ahead. 

Today is beautiful.