Brooke was born via emergency Csection, two weeks early and following unexpected complications around the time of her birth. After she was stabilized she spent almost two months in the hospital, where an expert team of doctors treated her kidney failure with dialysis and tracked her functioning to assess how much additional injury was caused by the reduced blood flow and oxygen loss she experienced. When neurological testing at 6 weeks old revealed an extensive brain injury and the team indicated that she would not be a candidate for a kidney transplant, her painful dialysis was stopped and she was released from the hospital approximately two weeks later to join her family at home.
For twelve years she surprised her doctors with her fighting spirit and made us feel so very blessed to have such an amazing child as part of our family. She faced many daily challenges including (but not limited to) severe spastic quadraplegic cerebral palsy (she was non-verbal and completely non-mobile with low tone in her neck/trunk and high tone in her extremities), cortical visual impairment, sleep apnea (she slept with a bipap machine for 4 years but was switched to supplemental oxygen overnight when she was 5 years old to improve her comfort), refractory epilepsy (she had a vagus nerve stimulation device surgically implanted at 6 years old to try and control her seizures), reflux and poor motility (her low tone caused swallowing issues and slowed her digestion so she had a feeding tube since birth) and a spastic bladder (she needed help with emptying her bladder completely 4-5 times a day). Despite these many challenges she never failed to inspire us with her sweet temperament (even with poor sleep), her incredibly contagious smile, and the skills she continued to develop over time at her own pace.
Because she survived against the odds (off-dialysis she was expected to live days, weeks or months at best), her doctors were unable to predict how long she would be with us so we were committed to finding ways to enjoy the time we had with our precious little girl.
Words cannot express the depth of the heartbreak we feel from her loss; however, our wistful tears will always be filled with tremendous gratitude for the gift of time we had to learn from the greatest teacher we have ever known. We miss her so very much but the memory of her sweet loving soul shining through her contagious smile often fills the hole in our gaping hearts and her wordless wisdom to find joy even in the most difficult moments guides our weary steps each day.
