An Unexpected Gift

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 

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."