Proudly Supporting all Military Families with a Special Needs Dependent
Introducing Haley Tuthill, an Air Force spouse, stationed at Point Loma in San Diego, CA. She is the wife to Jim and mom to Adeline (5), Evelyn (3), and Wesley (1). She loves being a military spouse for two main reasons. Haley tells us, “First, I am married to my hero. I am extremely proud of my husband and what he does for our country. Second, because I love traveling to new places with our family, meeting new friends, exploring new places, and experiencing new adventures every few years.”
Haley’s daughter Evelyn was born a typical gorgeous baby, but soon began screaming painfully and uncontrollably. She saw so many doctors, ER visits, and Haley sought the advice of many, many friends. She was told the baby just had colic, although her intuition told her differently. In early 2013, Evelyn was admitted to the hospital, and a feeding tube was inserted and medication was given to help calm her. Her health continued to decline and it was apparent that she had physical and developmental delays. She developed uncontrollable seizures and the family was given devastating news that their baby was dying. Haley and her husband Jim decided they wanted to give Evelyn quality of life instead of focusing on quantity. Haley says, “We made a bucket list and crossed off so many items. Evelyn rode multiple horses, went to Disney World, Lego Land, splashed in the ocean, went to concerts, and dressed up with her big sister and little brother in my wedding dress. We stopped worrying about how long she would live and focused on each day as a blessing. Eventually, we were able to see Evelyn smile, hear her laugh, and play with her siblings. Evelyn lived 1,049 miraculous days. She died in my arms on November 15th in our home. She fought every day of her life and she did it with such grace and always smiling.” Haley tells us that because of Tricare and EFMP, they were able to give Evelyn the life she deserved. While Evelyn was alive, the Tuthill’s were able to give her a beautiful life because they didn’t have to worry about health insurance. They knew her medical bills would be paid so they were able to spend money crossing off items on her bucket list instead of paying medical bills.
Haley’s biggest advice for special needs parents (and typical parents) is to trust your instincts. “When Evelyn was born, I knew something was wrong with her. However, I trusted the doctors when they told me things were ok, and not myself. I often wonder if I would have trusted myself more and fought harder in the beginning if she wouldn’t have needed a feeding tube and required less hospital visits. In my opinion, doctors are taking an educated guess. YOU know your child and YOU know when something is wrong. You’re the expert on your child and the doctor is the expert on medicine. Don’t doubt or question yourself. Listen to your mother instincts!”
Haley’s story is heartbreaking and beautiful. Through so much pain and suffering, Haley and her family found that love always wins. “Every day my arms ache to hold her again. Everyday my ears ache not hearing her laugh. Not seeing her smile every day brings me to my knees in pain. What is getting me through this grieving process is that I know I trusted myself and gave her the life she deserved.”
The Military Special Needs Network honors and salutes Haley Tuthill as the Military Spouse of the Day! We thank you for being such a wonderful military spouse and an amazing advocate.
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