No, I’m not talking about a type of milk. It’s February (wow, can it really be February already? Seems I was just making up my shopping list for Christmas), which means March for Babies Kickoff, and that April is coming quickly. As with September, this time of year takes me back to Ryley’s birth. I know, I know….you’re probably all sick to death of hearing about it. Blah, blah, blah…14 weeks early, 2 pounds, 93 days in the NICU….etc, etc, etc. How many new ways can I come up with to tell his story, to present the urgency of this issue, to pull at your heartstrings hoping you’ll join our cause and donate to the March of Dimes through our Team Roo? How many speeches can I give, how many blogs can I write? Just about any mother will tell you she could talk about any of her children forever and a day, and in a gazillion different ways. Add anything extra-ordinary to that child’s story, and you can multiply those tellings by a million more. And I will talk til I am no longer capable of speech about this amazing organization that saved my son’s life.
Ryley is a miracle. There simply is no other way to say it. Yes, it is wondrous what medical science can do these days, but his outcome is quite incredible. Yes, science is keeping smaller and earlier gestation babies alive these days, but what I can’t say strongly enough is that almost NONE of them end up like Ryley. And even Ryley’s outcome has taken years and a lot of hard work to reach. Out of all Caucasian males born as early as Ryley, only 2 or 3 in 100 will end up as Ryley has – relatively unscathed. Yes, I narrowed it down to Caucasian males born at 26 weeks. I’m not talking about all the other micropreemies or preemies. I’m talking about one small group of the over 500,000 babies born before 37 weeks gestation each year in the US. Out of the Caucasian males born at 26 weeks, only 2 or 3 in 100 will have no vision or hearing problems, will have no heart-valve surgeries, will have no Cerebral Palsy, will have no feeding issues, will not require supplemental oxygen past their first birthday, will not need years of intense therapy to walk, talk, and eat, will not suffer the lifelong effects of a severe brain bleed, will not have to live with any other of the countless possible issues preemies face in their lifetimes. Ryley has outgrown the mild asthma that plagued him for six years. Ryley has outgrown the visual processing disorder he still has glasses for (more of a crutch at this point). He still (and always will) has ADHD. His dentist visits are frequent and often painful because, due to all the oxygen and medication he had during his early life, he does not have all the enamel he needs on his teeth. And he will always have a mother who watches him with tears and wonder and fear in her eyes.
It was hell getting here. The guilt I feel is often overwhelming. Every challenge he has faced, I have had to stand by and watch, unable to take any of it away from him. The worst days of my life were those spent by his isolette in the NICU, watching his extremely small body fight to do things it wasn’t ready to do, all because my body failed him. What was done was medically necessary, but it was brutal. His lungs, not ready to breath on their own, were forced to breath. His digestive system, not ready to eat and process food, was forced to do so. His body, which should not have felt anything other than the warmth and comfort of the womb, was poked, prodded, stuck, touched by cold hands, rolled, changed, bathed, and weighed every single day. His brain, which was still forming, was interrupted a multitude of times each day causing who knows what damage and changes. And it didn’t end when he finally came home. We had a home nurse, as well as his pediatrician, following his progress, or any lack thereof, constantly. I was afraid to breath – who knew what shoes were hanging over my head just waiting to drop? When he was three, and we were told he was “developmentally caught up”, we still weren’t done. When he could have started Kindergarten, I wanted him to be ready with all my heart so I would have one more indicator he was “normal”. My mother’s heart broke when we finally decided to hold him out (which ended up being one of our best decisions ever, but still). And then there have been more issues crop up in the past two years that reminded me he will ALWAYS be a micropreemie. But still, Ryley is in the top 2% of all Caucasian males born at 26 weeks. Imagine what those other 98% go through? My brain struggles to grasp it.
Team Roo is preparing for a seventh March for Babies on May 7th. I can guarantee you I will still be emotional that day as we celebrate as a family the miracle Ryley is. Have I tapped your heartstrings? Has his story moved you? Then join us. You can donate to Team Roo at http://www.marchforbabies.org/team/t1472613 You can join our team too (you don’t have to walk in San Diego with us, you can find a walk local to you, or just raise funds without walking). We have an ambitious goal of $9300.00 this year – $100 for every day Ryley spent in the NICU. Whether you donate, join or team, our just encourage us with your words and thoughts, thanks for being part of our ride on this journey. For a visual of Ryley’s journey go to http://www.onetruemedia.com/shared?p=12c636509d70128e894698&skin_id=601&utm_source=otm&utm_medium=text_url