When we first brought Lillian home after 2 weeks in the NICU at Riley Children's Hospital, we were praying for her to have Unexplained Hypotonia. I just wanted to take my baby home and get back the chance to have the new mom experience that the doctors robbed me from having. My dreams of having those adorable newborn photos were crushed by the doctors instructions not to take Lillian anywhere but home. The feeding tube she had taped to her face and pushed down her nose into her stomach was a constant reminder that nothing was going as "planned." The baby we planned for from day one became the baby that none of our plans mattered to. The dozens of newborn and parenting books I read during the 40 weeks that I carried her in my body meant nothing. Nothing applied.
When Lillian was around 6 weeks old we got a phone call from our local pediatrician telling us the news of her diagnosis. She has Prader-Willi Syndrome. I'll never forget the sinking feeling in my body. Everything went numb. At that moment I felt like I lost her. I lost the child I had carried for 40 weeks. The baby that I wanted so desperately to be perfectly healthy. She was gone. I felt like I was given someone elses baby to care for. Like God was saying, no Sarah, this is the baby you get to take care of. All of those dreams you had of her breastfeeding, baking cookies, going to prom, high school and college graduation, her wedding, grandchildren... you're going to have to let go of them right now. This is different and you need to start over. Stop trying to plan the future because it's all changed now.
For weeks it felt like I was walking around with an open wound. I kept going back and forth in my mind with the situation we found ourselves in. She seemed so perfect and innocent, but in my mind it was so hard to accept our future. I felt like the doctors painted her as a monster, and that our future was going to be hell. But the tiny baby that I was caring for was so sweet. She hardly cried, and as high maintenance as she was health-wise, she had the most easy going personality. She was completely reliant on us for her survival and I had to choose to either face the challenges ahead of us or pull the covers over my head and pray for it to all be over. So we took things one day at a time. Sometimes it was more like one hour or minute at a time, but we did our best to show her she was loved.
Weekly physical and occupational therapy started sometime around 8 weeks. She couldn't lift her head while on her belly and could hardly move her head on her back to track a toy or light. But man did she have great eye contact. She would study anyone that came to see her and follow the conversation going on around her. Week after week we watched her improve. She has always amazed me with her determination and ability to learn quickly what she "should" be doing. She tries so hard to train her muscles to do the simple things we all take for granted. It's still a lot of work, but she's progressing so well. I would guess that at 8 months she's physically doing what a 5 month old should be doing. She still gets about half of her meals through a G-tube that was surgically placed in her stomach, but we know it will only get easier for her to eat by mouth. Sometimes I wonder if that's really something to celebrate... but the more muscle tone she gets in her mouth the easier it will be for her to talk - which will also be delayed. She's getting weekly speech therapy now to help.
Having Lillian in my life no longer feels like a loss. The love she brings to our lives is greater than anything I've ever experienced or thought I would experience. The plans we had for her future are now much different than what we originally expected before she was born, but it's all worth it. It feels so selfish when I think about the "troubles" of adjusting our lives to meet her special needs. She's the one who has an uphill mountain to climb every day. She's the one who will have to fight her instincts daily to do what is right for her body. She's the one who has the troubles of adjusting to our lives.
Every day we work with Lillian to make her life a happy place. To build her strength and show her love while establishing a routine she can hopefully benefit from for the rest of her life. Every day we soak her up and all of her joy in experiencing new things while also meeting new obstacles. Every day we look PWS in the face and say "you are not taking her from us today." One day she's going to look back and be hungry. Unless SOMETHING changes. We NEED to find a cure for the insatiable hunger. Research NEEDS to happen to find this cure.
Please donate to Foundation for Prader-Willi Research. No parent should have to fear the future for their child. No child should have to fear their own lives.
Vanessa and Beth are running this 10K because they believe in Lillian's future and the many other babies, children, and adults with PWS. They believe that research can find a cure. They believe that it all starts with one person doing SOMETHING to raise money.
If you also believe in research and increasing the quality of life for Lillian and others like her, please donate to FPWR.