Travels with Our Trachie
Session Ten: The Winding Journey
Our travels were once again taking us to the hospital where our daughter was receiving orthopedic care for her rare form of dwarfism. One of the characteristics of her rare condition was bilateral clubfeet. She had gone through dozens of leg casts while in the NICU, but typical casting was not enough. Around seven months old, she had her first minor surgery for clubfeet correction. (Achilles tendon lengthening).
The next phase of treatment was bracing with AFO (Ankle Foot Orthoses). Our girl hated wearing them, so it wasn’t proving an effective form of correction. The time had come for a more invasive surgery and another trip across the state. The orthopedic surgeon had prepared us for what would likely be a painful recovery for our daughter. The plan was to insert pins to hold her foot in place, in addition to lengthening two tendons in each foot. However, during the pre-surgery assessment, the orthopedic doctor was surprised to see great improvement in her feet. Though still quite deformed, her feet would only require a minimally invasive procedure of lengthening the tendons.
We were elated to hear the positive report and knew in our hearts that the healing had been an answered prayer. As we have traveled through the unchartered territories of life with a medically complex child, the most difficult road for this mommy has been the winding journey of faith as I grappled with understanding why our daughter was born with such a debilitating disease. I had been running an emotional marathon ever since the terminal diagnosis during the pregnancy. I can’t imagine the amount of miles by broken heart had traveled as I failed time after time to find my faith amid the endless storms.
It would be irresponsible and entirely false to pretend I was a pillar of strength for our daughter. I showed up for her every day, but I struggled to cope with our situation. For a long time, her journey of life was two steps forward, then one step backwards. My faith walk was no different. There have been constant setbacks and failures that have accompanied my personal growth. Along our journey, we have learned to celebrate the milestones, no matter how seemingly insignificant. Our life has given us a tremendous gift: perspective. This perspective allows us to appreciate every step of the journey, all the highs and all the lows, because they are all necessary to reach the destination.
Had we not been traveling through life with our trachie, I sincerely doubt I would have ever slowed down enough to prioritize my faith walk or hear the Lord’s call on my heart. Today, I want to acknowledge how tremendously grateful I am to be living the trach life with my incredible family.
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Hi,
My brother was born in 1965 with multiple birth defects. He initially wasn't expected to live more than a few days. He also was given a trach. He ended up living with it for 5 yrs. My brother is now 57yrs old and has lived a life that has been a testimony to God's faithfulness.
I can tell you 2 things from our family's journey.
You received this blessing because God saw in you the ability to love and see the possibilities for her life. You have the ability to unwrap the blessings that have been given to you through this gift. You will be able to see that God is faithful.
Secondly. Put her completely in God's hands and then get out of His way. Don't put God or her in any kind of limiting box in her life or situations. Let God show off in her life. God can and will use her to be a blessing to many for His Glory.
God be praised!
Be Blessed
Bob