After a few months of lots of crying and throwing up as we tried to get Lexi back on track with her nutrition and keeping enough we started to see a noticeable change. She was once again aware and fighting. As her health improved we saw more smiles and she started laughing again. Her laugh is the most beautiful sound in the whole world.
I was excited about her being healthy but also cautious because I didn't trust it to last. But as the months went on and the only illnesses she got affected her like a regular person rather than being life threatening my heart started to heal.
We got 10 months of health with Lexi without any life threatening illness. After several years of struggle this was an unexpected gift. I will forever treasure that time and the memories we made with her. We were able to bring her to a special needs camp where she went horse back riding (and hated it) and got to go on a pontoon boat (and loved it!) We brought her to the beach twice. For the first time since she was a baby she got to feel the sand on her toes. We went for family walks in the trails by our house and to the park as a whole family.
Life is so different when Lexi is healthy. I've come to realize it's not her disability that is hard but the health issues associated with it. The fragility her immune system seems to have is our biggest hurdle.
What a mercy every moment of health has become.
"And I will cause showers to come down in their season; they will be showers of blessing. Also the tree of the field will yield its fruit and the Earth will yield its increase, and they will be secure on their land. Then they will know that I am the Lord, when I have broken the bars of their yoke..." Ezekiel 34
Saturday, August 26, 2017
Interceding
One of the things I have learned through Lexi's life is that it's good to share what we are going through and let other people help bear our burdens by interceding for us in prayer. Many times that has been our strength when things seemed hopeless and too much to bear. During those painful couple years where Lexi was out of it I stopped being able to pray for her because it hurt too much. We had a bible study at our house and every week our leader would pray for her. It is one of the many ways that we as a church body can love those that are struggling.
Miracle and Tragedy
When Lexi was born not alive and had to be resuscitated after a regular, healthy pregnancy...and all the health issues that followed a lot of older people kept saying to me with tears, "you are so young for this to happen, you are just getting started." I didn't understand why our age mattered when it came to loss.
But now once in a while I will read a story about a couple just starting out and a horrible tragedy or accident or health issue or death happens. The world as they know it, as they dreamed it would be is over. I see that and I feel that loss for them so profoundly because it was our loss. Thriving turns to basic survival. The time of youth to be carefree is gone before it started.
There is a picture of me in Lexi's baby book. I am barely pregnant with her and holding ice cream and pickles up for the camera. I am glowing, so excited to be a mommy.
I can't bear to look at that picture. It burns to even talk about the hope before.
I share this now because it's Lexi's birthday. She's 12! Usually birthdays are celebrations but for me February 11th is a hard day, representing one of the most painful times in my life. A time of fear and uncertainty, darkness and hope deferred. It's a day of reflection and one that I allow myself to feel the loss, her loss. A 12 year old in a broken body. Not able to walk or talk or even change her own position. One who often struggles to breathe.
A miracle that she's still with us.
A tragedy that her life has been filled with more physical suffering that most people ever know.
We have learned to find the joy in our reality.
There's been overwhelming joy. So much character work and growth in Daniel and I and our boys.
I find joy in the man that my husband has become and the unconditional love he shows our daughter, loving her fully just as she is.
I find joy in Lexi's smiles and snuggles, in her cheeks and baby soft skin.
I find joy in Caden's insistence that Lexi is perfect just the way she is and Chase's compassion and struggle that it's not fair her life is what it is.
I find joy in seeing others love my girl and in her joy at being loved by all of us.
But today I'm also jealous of people who have all typical kids and their worries are regular worries, not life and death worries.
I'm sad that my daughter cannot go get a pedicure with me and giggle about her friends and the things she likes.
I'm sad that my relationship with her on this earth will always be that of a caregiver and that the stress in our life will always reflect on her health at the current moment.
Lexi's life is a mixture of abundant blessings (most unseen) and overwhelming loss (what is seen).
She is both a miracle and a tragedy. I'm feeling the weight of that today.
"But fix your eyes not on what is seen but what is unseen. For what is seen is temporary but what is unseen is eternal."
But now once in a while I will read a story about a couple just starting out and a horrible tragedy or accident or health issue or death happens. The world as they know it, as they dreamed it would be is over. I see that and I feel that loss for them so profoundly because it was our loss. Thriving turns to basic survival. The time of youth to be carefree is gone before it started.
There is a picture of me in Lexi's baby book. I am barely pregnant with her and holding ice cream and pickles up for the camera. I am glowing, so excited to be a mommy.
I can't bear to look at that picture. It burns to even talk about the hope before.
I share this now because it's Lexi's birthday. She's 12! Usually birthdays are celebrations but for me February 11th is a hard day, representing one of the most painful times in my life. A time of fear and uncertainty, darkness and hope deferred. It's a day of reflection and one that I allow myself to feel the loss, her loss. A 12 year old in a broken body. Not able to walk or talk or even change her own position. One who often struggles to breathe.
A miracle that she's still with us.
A tragedy that her life has been filled with more physical suffering that most people ever know.
We have learned to find the joy in our reality.
There's been overwhelming joy. So much character work and growth in Daniel and I and our boys.
I find joy in the man that my husband has become and the unconditional love he shows our daughter, loving her fully just as she is.
I find joy in Lexi's smiles and snuggles, in her cheeks and baby soft skin.
I find joy in Caden's insistence that Lexi is perfect just the way she is and Chase's compassion and struggle that it's not fair her life is what it is.
I find joy in seeing others love my girl and in her joy at being loved by all of us.
But today I'm also jealous of people who have all typical kids and their worries are regular worries, not life and death worries.
I'm sad that my daughter cannot go get a pedicure with me and giggle about her friends and the things she likes.
I'm sad that my relationship with her on this earth will always be that of a caregiver and that the stress in our life will always reflect on her health at the current moment.
Lexi's life is a mixture of abundant blessings (most unseen) and overwhelming loss (what is seen).
She is both a miracle and a tragedy. I'm feeling the weight of that today.
"But fix your eyes not on what is seen but what is unseen. For what is seen is temporary but what is unseen is eternal."
Saturday, April 2, 2016
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.
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)
Thursday, March 31, 2016
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!"
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.
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.
Wednesday, February 4, 2015
Learning To Live In Today
In order to continue Lexi's care at home we had to get oxygen and a BIPAP machine. Every night we would put
the BIPAP on Lexi's face, strapping it securely behind her head to help it
stay in place. We would make jokes, calling her Darth Vader, trying to lighten
the heavy mood. She hated the bi-pap even though it helped her. She would turn
her head back and forth in an effort to dislodge the mask.
I hated the bi-pap because it felt restraining. Knowing she couldn't even move
her arms enough to take it off if it was bothering her made me feel like I was
wronging her. It hurt to see the marks on her face every morning from where it
rubbed. In a sort of silent rebellion I let Daniel be the expert on it and for
the most part he was always the one that put it on her.
About a week after we came home we were unable to wake Lexi
up in the morning. I thought she might be dying because she was not peeing or
digesting her food. Her temperature and oxygen levels were low. Three days
later she woke up and smiled at me. I burst into tears, releasing the
overwhelming fear and stress of the previous days. This was the start of what
we call sleep mode. Randomly Lexi will sleep all day, sometimes for days at a
time. It doesn't seem to bother her. Its hardest for me when she misses
holidays or birthdays. It's a little... weekend at Bernie's when we put her in
her blue tumbleform chair so that she can be with us whatever we are doing. Though
she's not really present while we are opening gifts or having a family movie
night it looks like she is with us.
The trauma Lexi's body went through in the hospital took its
toll on her. Even when she was awake she was often zoned out. There were times
when her face was pale and her eyes dull and we couldn't get much of a response
out of her. She never laughed anymore and we had to work a lot harder for her
smiles. I constantly felt like I missed her even when she was with me. We
couldn't really make sense of what was happening to her. We assumed her body
was shutting down.
I came home from the hospital determined to make the most of
whatever time we had left with Lexi. Both Daniel and I had regrets of not engaging her enough and wanted the rest of her life to be full of fun places
and experiences. She was too fragile though and we ended up right back where we
were, staying home because of her health. We decided to take her out of
school indefinitely. Any outing at all was really hard on her. It was sad to think that at 7 years old her best days were possibly behind her. We didn't realize they were her best days until they were already gone. It was too late to go back and have more fun with her. We had to do our best with the limitations of today. That was a really hard but powerful lesson for me. I tend to think of happiness as this place I will get to when...God is showing me that if I can't find joy in today I will never find it.
This sounds like that time was all bad but that's not true. It was
a time of grieving for me as I came to acceptance with all the changes Lexi's
body was going through. She no longer had good full days but she did have good
moments. One evening she was so silly and happy and I snapped the picture above.
The boys, especially Chase became a lot more interested in Lexi. He liked to
"read" to her and watch movies in her room. Seeing her brothers show her love and kindness brings me a lot of joy. It's a reminder that God works good in all things.
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