In the beginning I think people felt so badly that we had lost Cameron that if I had asked them to donate plastic bags filled with sand they would have done it – just because I asked them to! Slowly, as the project has grown, more and more people ask about the choice for books. Why books? Why not money? Why not preemie clothes? Why not donations of food items to the Ronald McDonald House etc.? All of these would have been wonderful causes to support. However donating children’s books was a cause so near and dear to my heart.
It is true, a children’s book will not improve a baby’s lung functioning. It will not make them grow. It will not help them learn to feed. It will not fight an infection. However, a children’s book can empower a new mommy to help their baby do all of these things. And a strong mommy can do just about anything. Want to know how this is possible? …read on!
Top 5 Reasons Why – “It’s not just a book!”
While Cameron was in the hospital, he had 15 brain scans to monitor his brain functioning/development. Against all odds, each and every one came back 100% normal. Did reading to him contribute to this? …I don’t know…I’ll probably never know for sure…but based on this information, it certainly didn’t hurt!
Due to the fact that he was on a special type of ventilator, I was unable to hold Cameron for the first 5 weeks of his life. I have spoken to many NICU moms, and I have never met one who had to wait so long to hold their baby. Babies who go that long without being held, usually have sensory tactile issues…. they don’t like to be touched or held. Cameron, on the other hand, always loved to be touched and from the moment I was able to hold him, he loved being in our arms. Did the act of reading and bonding with him contribute to this? I have no steadfast proof…but I believe with all of my heart that it did.
When you have a baby born prematurely at 24 weeks, no one celebrates this….It is a scary and intimidating time. No one sends you flowers or buys you baby gifts. When a baby is so tiny and fragile and on a ventilator or some other breathing apparatus, people don’t send you congratulatory cards. They send you “thinking of you” cards. It’s not their fault…people don’t know what to do. What could a baby that size possibly need? …and …. what if the very worst happens?
With our program, when a new mom walks into the NICU to see her baby (sometimes for the first time), there in the isolette, with the baby is a brand new children’s book. It is a way to say, n“regardless of size, gestational age, or prognosis – we celebrate your baby. We celebrate her life.”
Each of the books that is donated, has a label inside where the person who donated the book has written a personal inscription. This personal note is a reminder to this mother that there is someone out there who cares. And while they may not understand exactly what this new mother is going through, their thoughts are with this mother and her new little one.
For those who will sadly lose their babies within the first few days, weeks, months the book will hopefully offer them some solace. No matter what the mom and dad could or could not do with their baby, if they were able to engage in a story time, they will always have that memory of actively doing something with (and for) their child. We sincerely hope that this can offer them some small amount of peace.
After being in the NICU just a short time, I noticed that some parents seemed absent from the bedside. I began to make some judgment, wrongfully. After speaking to many, many mothers, I soon got a clearer picture of what was happening… Many of these mothers didn’t view themselves as equipped to take care for their babies. The underlying theme was, “What could I do for her? The nurses and doctors are the only ones who can help her. I would probably just bring germs to the hospital that would make him sick. I live hours away and have other children to care for. It would be unfair to take time away from them to come and just stare at a baby that I can’t touch or hold…a baby that probably doesn’t even know I am there. I will wait until he gets better/stronger/healthier.” Over and over I heard the helplessness in their voices. The feeling that you have nothing to offer your baby is the most devastating feeling in the world. I heard this because I felt it too. And I am not scared to admit that I thought all of those things at one time or another. I understood the desire to run from the bedside screaming because of that helpless feeling. I understood it because I felt it too.
Most of you have read the story about how I walked into the NICU for the first time, how I was not able to touch or hold my precious baby boy. I saw wires and tubes and machines. I saw nurses and respiratory therapists and doctors. I spoke very little that first day or for several days after that. I went to the NICU for the next 5 days of Cameron’s life and stared into his isolette…silently…for 8 hours a day…saying very little. On the 6th day, while visiting Cameron, the quietness, the loneliness, the helplessness got to be too much…after sitting in front of his isolette for such a long period of time, I was seized with an overwhelming feeling telling me to run – run just as fast as I could. I left the hospital early that day …the helplessness had turned to hopelessness…and an eerie sadness settled in. For not only was I not able to do mother-like things for my baby…I had begun to feel as if I was not equipped to even be his mom. I don’t know what exactly led me to the bookstore that afternoon or how I got the idea to pick out those 3 beautiful children’s books -which I chose because I figured a boy would like them. But when I began reading to Cameron, his reaction was astounding. The numbers that tell his oxygen saturation levels immediately went up higher than we had ever seen them and he actually turned his head slightly toward where my voice was coming from.…. More than anything I felt connected to him…I felt like this was something only I could give him. I had done something FOR him.
Suddenly, reading to Cameron became the first “I can” in a long list of “I can’ts”. Gradually, I added other things to our repertoire. I began asking to, and was readily given the opportunity, to take over many parts of his care. It began slow… what became “I can read to him” became “I can check his temperature.” “I can measure his stomach.” “I can bathe him.” “I can give him his meds.” This led to something even more remarkable. It led to the empowerment of “I know what my baby likes. I know how to calm and soothe him. I know what scares him. I know what makes him sad. I know when something is wrong with him.” All of this brought me to one thing…”My baby needs me.” And that one solitary notion is what made me (and what would make any other mother) know that I could not run screaming from the room. He NEEDED me. And yes, despite the doubts some might have, this all came to be because of a book and a storytime. One absolutely led to another because reading to Cameron became the first “I can” in a list that grew and grew.
For me, ultimately, this led to something bigger. In June after Cam had his tracheostomy, they found that Cameron had pulmonary hypertension of prematurity and explained his condition would likely be terminal. In addition he would need too much care and we would never be able to take him home. That list of “I can’s” suddenly got much bigger. It became – “I can be trained to do all his care. I can handle any situation that might come about. I can bring him home safely.” I can, I can, I can….and… I did.
So…”just a book?” I think not.
I like to think of each book, perched on a babies isolette, as a powerful reminder – a reminder of the simple gifts we can offer our children, all of our children, no matter how small or fragile. It is a reminder to a mom that she has what it takes to care for her baby. She is needed. She is vital. It is a reminder of her strength…and it is a celebration of her babies life. We, at Project: Cameron’s Story hope that the book and the act of storytelling can be the
first “I can” in a long list of successes for mom and baby.
How could anyone ever consider that “just a book”?