March for Babies

When I worked at the Child Development Center on Aberdeen, I had one student who stood above the rest. He was a very intelligent little boy, caring, compassionate, and funny! The child of dual military parents, he was only 4 but was wise beyond his years. He often spoke of his sister, Julia Lani. This may seem like a normal occurrence for a 4 year old boy, except that his sister lives in Heaven. Julia was born with severe complications and while she did not live long, she lived long enough to touch the hearts of those who love her. Julia's mom has shared the story of her birth and ascension to Heaven with me, and I would like to share it with you all.

The last few years have been quite difficult for our family. As a dual military couple stationed in Germany, we were thrilled by the news in 2006 that we would be adding a little girl to our small family. Everything was perfect until the day she was born in a small hospital in Bamberg. We found out post-partum that she suffered from Heterotaxy Syndrome which includes many serious birth defects. She only had three chambers in her heart, four spleens, and biliary atresia which forced her liver to shut down. These were just some of the more serious problems. We were medically evacuated to Walter Reed Army Hospital 6 weeks later only to learn that her prognosis was grim.

She made a final transfer to Children's National Medical Center in Washington DC for the first of her major operations. My husband, one-year old son and I had left all our belongings in military housing in Germany with the promise that someone would ship everything to us soon. Since we were on a medical TDY status, we had no duty station to call home. We were
homeless until the Ronald McDonald House of Washington DC took us in. They provided shelter that we could afford and food when we needed it. It was a blessing to have a place for our son to take a break from the hospital and just enjoy being a toddler. Julia received wonderful care from some of the world’s top surgeons. She was the miracle child that was supposed to come home. After her first major heart repair, she was given the clearance to receive a new liver. On Monday, October 9th we were informed by our social worker that Julia’s medical bills had just totaled over one million dollars. The following Thursday we were told that she was doing very well so they pulled all of her main lines, including her antibiotics. On Friday she got sick. Saturday, her kidneys shut down and the hospital priest administered last rites. Sadly, our Julia succumbed to a hospital-borne infection that took her life on Tuesday, October 17, 2006. She died in our arms and was carried to Heaven on the wings of a butterfly. 
She made a final transfer to Children's National Medical Center in Washington DC for the first of her major operations. My husband, one-year old son and I had left all our belongings in military housing in Germany with the promise that someone would ship everything to us soon. Since we were on a medical TDY status, we had no duty station to call home. We werehomeless until the Ronald McDonald House of Washington DC took us in. They provided shelter that we could afford and food when we needed it. It was a blessing to have a place for our son to take a break from the hospital and just enjoy being a toddler. Julia received wonderful care from some of the world’s top surgeons. She was the miracle child that was supposed to come home. After her first major heart repair, she was given the clearance to receive a new liver. On Monday, October 9th we were informed by our social worker that Julia’s medical bills had just totaled over one million dollars. The following Thursday we were told that she was doing very well so they pulled all of her main lines, including her antibiotics. On Friday she got sick. Saturday, her kidneys shut down and the hospital priest administered last rites. Sadly, our Julia succumbed to a hospital-borne infection that took her life on Tuesday, October 17, 2006. She died in our arms and was carried to Heaven on the wings of a butterfly. 

I always thought it was awesome how the little boy's parents remembered their daughter and spoke of her frequently and that the little boy did as well. It was not something kept hush hush but the little boy had been taught to be proud of his little angel sister. Now, as a widow, I get that so much more. Even then, I thought it was awesome but now I can just appreciate it in a whole new light. People we lose are not secrets, they should be remembered, spoke of often, and we should be proud to know them and tell others of our loved ones in Heaven. The little boy and Julia's mom participates in March for Babies each year, fundraising for the babies, the ones born too soon or born with birth defects, facing many more challenges right at birth. This year, I've joined their team and their quest to raise awareness and money for the babies. After watching my little niece Summer come a bit too soon, and her struggle for life and her earliest days in the NICU, and how she has beat the odds and become a strong little baby, I know it is incredibly important to raise the funds and awareness so other babies can be helped, other families helped.

I would love it if you took a moment to visit my March for Babies site, and if you have a bit of spare change laying around, it would be great if you donated to team Julia Lani in support of all the babies born too soon. Team Julia Lani