My name is Amanda, and I just wanted to share a little of my family’s story. In 2010 my husband and I got a huge surprise. We found out we were pregnant. We were excited; our oldest child was only 9 months old at the time. A month after we found out we were expecting, we had an ultra sound that revealed we were having twins!!
It was amazing. We were just elated. We were having identical twins. Because they were identical we were told we needed to be watched more closely. Around 17 weeks we got a phone call from our doctor saying something was wrong with our girls and we needed to get into the office right away.
We found out we had Twin to twin transfusion syndrome and that it is 95% fatal for both babies. We were and still are devastated. We were working on a plan of treatment when we found out around 20 weeks that one of our beautiful babies had died. Her heart stopped. Our little Samantha Joy was gone. To make matters worse, her sister Alayna had suffered a stroke due to a shared blood vessel and a clot that had passed from Samantha to Alayna. The doctors sent us home telling us Alayna would too suffer the same fate and we should start looking for funeral homes.
I spent 6 months on strict bed rest. It was a very hard time. Because of the ttts I was able to still see the outline of Samantha the whole pregnancy, all the while praying for Alayna to make it. By God’s grace, Alayna Grace was born strong at 39 weeks. She was born on September 21st at 8:11 p.m. and Samantha Joy was born at 8:16. Leaving Samantha was the hardest thing we have ever done. I don’t know if we will ever recover from that. Even with that going on we had another beautiful little girl we needed to focus on.
Alayna was whisked away to be checked out. She was very strong but there were obvious things wrong. Her head was a little misshaped. The next day the doctors pulled us into a room to sign the release forms for the funeral home for Samantha, and when we handed them back they proceeded to tell me to keep the information close because Alayna would not survive to be 1. They told me that if she did survive she would probably be in a vegetative state.
She is a fighter. She turned 3 this fall, started preschool and is learning to walk in a walker. Even with all of her issues, we are beyond blessed. She is 100% dependent on us for everything. She cannot even roll herself over to adjust in the middle of the night; this is something we do for her about 3 times a night. Her eyesight is bad and she gets nervous if she cannot see us so even leaving the room she is in is a challenge. Having a child with special needs is draining physically, emotionally, and monetarily. My husband and I are in a tough spot. We make too much money for any type of government aid, but not enough money to pay for all the medical equipment and doctors’ bills. We have at times had to pick and choose what is most important.
We have done everything we can to figure out what to do. My husband picked up a second job, I have taken on more responsibility at work, and we sold our nice car and have two very old cars. We want to sell our house to lower the monthly payments and to get one that is handicap accessible, but we cannot sell the house for what we bought if for with the nature of the housing market. We don’t go out to eat, or go out anywhere. We don’t take vacations. My mom has dedicated herself to helping take care of the kids while we work. If she could not do this we don’t know what we would do. It is heart breaking to not be able to buy a chair your child needs when you know your taxes are going to pay for others and not your own child. It is here where the Prenatal Partners for Life came into our lives.
I was desperately trying to find something to help with our situation and through the grapevine heard of this wonderful organization. I called and immediately was blessed. They not only talked to me and gave me ideas to try but they also gave great advice. They started by sending us a care package. One of the hardest parts of having a handicap child is feeling isolated and alone. It is a comfort to know that someone out there understands and cares; especially after being told by every governmental agency your child doesn’t matter. The Prenatal Partners for Life also gave us a grant. It was beyond a blessing. Words cannot express. This grant helped to us pay for some therapy appointments that have helped figure out what walker would be best for our beautiful girl. It also allowed for us to buy her an adapted switch toy so we could practice what she was learning at school.
She LOVES walking and LOVES having a toy she can use on her own. She lights up using them both. And if the care package and the grant were not enough, this group sent us a couple gift cards so that my husband and I could go out to dinner. We actually were given these a week before our anniversary, and my husband and I had decided that we were not going to do anything for it because we needed to stick the money into medical bills. We hadn’t been out alone together in over 18 months. We really needed that time. Our lives are hard, but blessed.
Alayna makes us all better people. She is so amazing and joyous. She touches everyone she meets. Thinking of her going without is devastating. We work so hard at keeping joy is our daily lives. This organization is a blessing to all that contacts them. They help to take care of those of us that are forgotten or stuck in the middle. Through all of my research on what is out there to help families like ours, I have not found anything like the Prenatal Partners for Life.
