malnutrition

As Lexi became more aware I once again started thinking about how she was spending her time. It was another small miracle to have her present again. With her increased awareness though there was also increased crying and fussiness. Her regular mood was miserable and much like the days of her first year of life. We were giving her a lot of pain medicine because we didn't know what to do for her. She would scream a horrible pain filled scream every time we moved her or changed her position. 

We began seeing her various doctors to rule things out. We thought maybe her hips were bothering her again but the x-ray showed they were in place. No one could give us an answer for her increased fussiness. She also began losing her hair during that time. We got blood work done to check for deficiencies and were told it came back normal.

Then her g-tube started rubbing a sore on her stomach and we took her to the GI specialist, a new one since her old doctor had died. We were going to see about getting a bigger g-tube. He had an issue with her most recent lab work though. It turns out there were some problems with her liver function and we found out she had lost 11 pounds from the previous time she had been weighed. His conclusion was that she was suffering from malnutrition. That would be difficult to hear in any circumstance but especially since Lexi cannot feed herself and we are completely responsible for her food intake. I had a lot of guilt over this. Her new doctor showed us clearly through his body language and manner that he felt we were to blame. He did not know us or our daughter before that day. He was new to doctoring in general, condescending and full of passion for his job. Along with that came a poor bedside manner. We left with some answers and a plan to get her back on track. Also a lot of feelings. I cried much in the following days.

We ended up changing Lexi's formula to a higher calorie one because she had trouble keeping the volume down of what she was already getting and there's always the fear of aspiration pneumonia when she doesn't keep her food down. We went through a few months of me obsessing over her weight and despairing every time she threw up which was often as she adjusted to the new formula. Slowly she gained back everything she lost and more. 

The older Lexi gets the harder her care is for me. I am mentally exhausted with the weight of responsibility. Throughout her life I have fluctuated between distancing myself emotionally because it's too painful to walking around trying to control the universe with a ball of anxiety in my stomach. I blame myself for not seeing things first or knowing what her problems are. When she was a baby I was very proactive in her treatment, full of hope and energy to take on the world of disability. My life was consumed with her care. That was not sustainable long term. I have disconnected a lot as the years have gone on because no matter what we do it doesn't really change anything and more problems keep coming. My first thought when hearing she lost weight was if I was still on top of my game this never would have happened.

I believe Lexi deserves the best life we can give her. Unfortunately there is no training manual for her and we are finding our way as we go. It's a lot of trial and error since she cannot talk and there is no normal to measure up against. 

Thank God for grace. 

"There is now no condemnation for those who are in Christ Jesus" (Romans 8:1)

"Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." (Hebrews 4:16)

The Middle

"When you are in the middle of a story it isn't a story at all...but only a confusion. A dark, roaring, a blindness. A wreckage of shattered glass and splintered wood like a house in a whirlwind or else a boat crushed by the icebergs or swept over the rapids and all aboard powerless to stop it." -Margaret Atwood, "Alias Grace"

I want to share more with you about our time after Lexi came home from the hospital on hospice but just as she was often checked out with the foggy expression that burns me, making me feel like she isn't here I spent a lot of time somewhere else. I was in my head, daydreaming and going through the motions of regular life. It takes a lot of energy to not feel. The excruciating weight of grief of seeing Lexi's bad days turn into bad months was always there but I pushed it down and did my best to survive.

I tried to focus on the fact that this life is temporary and we are waiting for heaven but that is kind of a dark place to rest in. I could have hope in this life for myself and Daniel and my boys but where Lexi was concerned I had to fight hopelessness every single day. Sometimes every hour. I often lost that battle. Disengaging became much easier than fighting for joy. When she was away from me I tried my best not to think of her at all so I could enjoy the other parts of my life.

It's hard to remember a lot of what we went through...It's scary to remember. Overall I can picture an incredibly fragile Lexi. I became so careful with her. Every time I held her it was as if she was breakable. There were times where even holding her was painful for her.

She struggled a lot with her breathing and we were thankful for the oxygen at home. Every time she got sick it was life threatening. Daniel literally saved her life once when she stopped breathing and passed out because her airway was blocked with mucus. We had cancelled a vacation with friends because she was extremely sick. Daniel and I were taking shifts caring for her and while I was napping he yelled for me. I came down to find a passed out gray Lexi not breathing and Daniel saying, "I don't know what to do. I don't know what to do." She had stopped breathing during her bath and even after suctioning her had not started again. I asked him to give her to me and let me hold her. He handed her to me and her body heaved in a large breath and she opened her eyes. That day was one of the few times I have seen Daniel cry.

The natural conclusion was that Lexi's body was shutting down. We had no expectations for her for any tomorrows and were biding our time. Her temperature was often low. She slept more than she was awake. Her oxygen regularly dropped below healthy levels and she constantly had one sickness or another.

This was her life, our life for 15 months. Until one day in early fall of her 9th year the light in her eyes came back. I remember thinking, "Hello gorgeous. I've missed you!"

Isolation

I wrote this about a year and a half ago but never posted it. Today I feel brave enough...

Sometimes this life with Lexi feels...

Alone.

Even as I write about her life on these pages I think how can anyone who hasn't lived this really grasp what the hardships of her life have been? How can someone know what it's like to watch your daughter struggle and suffer for most of TEN YEARS unless you too have been there?

That's why it's easy to feel alone with the weight of it all.

Today God blessed me in the midst of a REALLY HARD DAY.

First He let me see life in my 3 boys as they danced and jumped in the pouring rain outside. They were delighted to be alive and their joy was contagious!

Secondly, He gave me a friend to pray and take some of the weight off my responsibilities this week.

Last, when Lexi was screaming during her Nebulizer treatment I held her and she quieted instantly. She was calm and looking around the room, content in my arms. It was a beautiful reminder that even on the worst days she still brings me joy.

I'm so sad for her. My heart is broken watching her hurt so much. There's a constant ache.

But even in grief there is hope...purpose...joy.