Monday, October 20, 2014

How Is Raine Doing?

You know, they say children are resilient. I believe it. Raine has been doing so well.
We are in a situation where we have great sadness, anxiety, and anger. Our hearts are breaking with it, but also many hearts of people around us and who know us are breaking. It would be impossible for a child to not pick up on that, so I am not naive enough to assume he is 100% unchanged. Just like I said for myself, if you see Raine, he is pretty normal. He isn’t anxious or frightened or sad. He doesn’t really know what is going on. So he might be acting out a little bit–or he might just be your typical 3 year old. I don’t know. I’ve never had a 3 year old before.
The age of 3 makes him oblivious to understanding Dan’s diagnosis beyond a simple “Daddy is going to Daddy’s doctor today,” or “Mommy needs to give daddy his medicine.” Raine got a little preschool medical kit to also help give daddy medicine, or to give anyone he can convince a special “check-up.” He calls them his doctor tools and uses the stethoscope, shot syringe, blood pressure cuff, etc. Of course his knowledge and questions about daddy’s doctor, sickness, and medicine will change as treatments begin and also as he learns more and grows. We have wonderful child development resources with Providence, so we already got a little book for Raine to help him identify some of the language and moments our family has and will have that other families don’t. I am grieving the loss of his future that is the future we envisioned (as all parents do) where Dan and I raise him and watch him become a confident adult and then when our hairs are grey, we each show him how to die with dignity and grace (as so eloquently spoken by my mother-in-law). You just don’t expect the “natural” order of life to get shuffled up. I know now that we are not special. Our bubble has burst. We are just like every other fragile creature living the human experience–there are accidents, bodies fail, loss occurs out of order; nothing makes us invincible.

I take tremendous comfort in the fact that we still don’t truly know when each of ours days will end. Anything can happen. So I am beyond grateful for the 3 years we have already had together. I am grateful that Dan and I had a hard time conceiving Raine—because we really enjoyed the SH*T out of each moment we had together from the moment we learned he existed. We took way too many photos…Far too many videos than could possibly be necessary. I wrote and documented so much. I cherished every wiggle I felt when he was in my womb and every second I rocked him as a newborn—even when I hated it because I was sleep deprived. I knew how lucky I was and it was special. I didn’t miss a moment. Dan and I laughed so much and experienced so much joy just observing Raine. We still do! Of course, life gets busy and I certainly got busy this year with two jobs, but I really feel like I never took anything for granted. I always tried to keep myself in check as much as I could. And so it continues.
I also take comfort in the fact that based on those 3 solid years of family bonding, and probably a bit of genetics/personality, Raine is extremely confident, smart, and sweet. He is a good kid. He is on a path of greatness. He could still be mayor of Carlton some day. He’s got what it takes. Those dimples! (Ha ha) We have been very open with him and letting him learn as much as he is capable about our situation. We don’t want to hide anything because he is already so clever. I do a lot of talk with him about his emotions and he is learning how to explain how he feels or “act” certain ways that he wants to act. He isn’t shy but he loves to “act” like he is shy, for example. (Forget mayor…He might be the next George Clooney?) My hope is that focusing on open communication will help him and he will always feel like he can tell Dan and I what he is thinking. So far he is only able to show us glimmers of what his brain is processing. As I tucked him in last week, he asked me with a little concern, “Who will be here tomorrow?” He has had a lot of visitors, guests, and fun and presents. It has been over a month since it was our “normal” routine of Raine, Dan, and I. It made me sad to realize his mind is processing that his routine has been disrupted, but I am also glad that he talked to me. And I know we can still keep boundaries and routines in place to a pretty great extent at this point, so we will. Sometimes I feel truly too tired to take a stand and NOT let him have a 4th popsicle. Or watch an hour of uTube on the iPad. Or insist he say “Please” and “Thank you.” Or maintain a nap schedule. But you know, as a parent, you pick your battles. You just make sure you are winning most of them! We may have a lot of visitors, but he will continue to go to daycare where he is thriving, and we will continue to do simple family rituals. We will do our very best for him. And he is keeping up with us. And always blessing us. Always.


  1. KENDRA: Being open and honest (as much as you can for his age) is so wonderful…You are right, they pick up on things and know when something is different. Toby and I had twins born prematurely and they did not live. 2 years later, we had our son, Wyatt. While this is a different situation, we have always been honest with him. Each year we celebrate the twins’ birthday with Wyatt and our family. Wyatt knows they were born too soon and didn’t live. He has seen pictures of them and we have a wonderful drawing of them up with all the other family pictures. I want him to grow up knowing that he has 2 older brothers. I think it is very important to tell them the truth…after all, isn’t that what we teach them? lol…

  2. MEGHAN J: This just breaks my heart, Leah….You are so right that they pick up on so much that you wouldn’t think they would at such a young age. Praying for you guys all the time!!!