Eleven years ago today, time stood still. We were expecting our fourth child, and we were very excited for our ultrasound that would tell us if we were having another boy or girl. We had no reason to believe that it would go any differently than the ultrasounds with our first three children. As the ultrasound technician scanned our baby, she told us we were having a boy! The perinatologist came into the room and gave us the news that our son had enlarged ventricles in his brain. She explained that this was called hydrocephalus, and that he would either die at birth or he would be nothing more than a vegetable. She advised us to terminate the pregnancy and explained that this procedure needed to take place asap because of Georgia law. We abruptly left and opted for a second opinion. The next day, we saw a different perinatologist and were given the same grim diagnosis and recommendation. We weren’t giving up and requested a third opinion. As Christians, termination was not an option for us, and the third doctor quickly realized that we weren’t giving up. He referred us to Dr. Reisner, a neurosurgeon at Children’s Healthcare of Atlanta for a fetal MRI that would give us all the medical information about our baby. On July 22, our bundle of joy that we named Luka arrived and three weeks later he received his first brain shunt. This is a device surgically implanted into the skull in order to alleviate inter cranial pressure. With lots of therapy, Luka began meeting his milestones. It wasn’t long before he started talking and walking. He was far from the grim diagnosis that he was given. I began sharing our story with other parents that had been given the same diagnosis. I had to share our story, I couldn’t sit back and let other babies not be given the chance of life.
When Luka was about 18 months old, we heard about a baby soon to be placed for adoption in Kentucky, she had also been given a similar diagnosis as our son. I hoped by sharing our story about Luka, it would help prospective adoptive parents understand what hydrocephalus is, how the shunt works, and help this baby find her forever family. For about a month, I couldn’t stop thinking about this baby and my husband and I prayed about her constantly. Every time we talked about her, Norah Jones came on the radio. Not once, not twice, but at least 15 times. We had never even considered adoption, but something just felt right. We decided to sit down and talk to our two older children and tell them about this baby that needed a forever family. I remember it like it was yesterday and I remembered our oldest son’s response. He said “it was a no brainer and we should be her forever family”. That was all it took and we began the process of adoption to make this little girl our daughter. I contacted my friends and family for letters of recommendation, we had a home study, were fingerprinted by the FBI, and our family was interviewed. Thankfully, we were approved. It was now time to come up with a name for our newest bundle of joy and iIt only seemed fitting to name her Norah Faith.
On April 10, 2007, Norah was born. We were still awaiting the state to approve our paperwork so that we could bring her home to Georgia. When Norah was 5 weeks old, we traveled to Kentucky to bring our daughter home. At this time, we met her birth mother and her birth grandparents. They wanted an open adoption, meaning that they wanted to keep in contact with us and receive yearly pictures and updates on her progress. We were a little apprehensive, but agreed. Over the years, we have become more than birth mother and adoptive mother, we have become family. We thank GOD every day for her selfless act and trusting us with a child that she dearly loves. Over the years, her birth mother has come to Georgia to visit us. We became friends on Facebook, she has joined us for class parties at school, and Norah was the flower girl in her wedding. When Norah was nine months old, we welcomed our sixth and last child Micah to the family.
When Norah was a year old, she was diagnosed with Aicardi syndrome. This is a very rare syndrome that only affects about 500 girls in the world. Her diagnosis was terminal, with most girls not living past the age of seven. She began having seizures and started taking medication to control them. We went through medication after medication and she was still having tonic clonic seizures, also known as grand mal seizures. Norah had countless trips to the hospital, many times resulting in being on life support. Something had to change or we were going to lose our daughter. This is when I read an article about many people treating epilepsy with cannabis oil. We desperately wanted the opportunity to try this medicine. Thankfully, house bill one passed and Norah was given a card from the Georgia Department of Health to use low THC oil. Unfortunately, obtaining the oil proved to be very difficult. It was legal to have and legal for Norah to use, but it was illegal to cultivate and make the medicine here in Georgia, so many parents had to break the law by crossing state lines. Although House Bill 1 was a great start, we need more. Representative Allen Peake spear headed HB722 that will allow in-state cultivation and safe, lab tested medicine that our daughter desperately needs. This bill would also add more diagnoses that could be treated with cannabis oil and would remove the THC limits. The removal of the THC limits is so very important because many patients require more THC to find relief from epilepsy. We need our doctors to make these decisions, not our lawmakers. I have spent countless hours at the capitol begging, pleading, and sharing our story with representatives and senators and asking for their support for HB722. Please contact your local lawmakers and tell them why we need HB722 in the state of Georgia.
Luka is now 10 years old and doing fantastic. He attends regular classes and is in the fifth grade. Norah is now almost 9 years old and attends the same school as her brothers. We are the proud parents of six children and live in Snellville. You can follow our story at For the love of Norah, on Facebook.
Mom to Noah, Cameron, Carter, Luka, Norah and Micah
The Lynch Family.