Some might say that their journey with CDH started with the diagnosis. Whether it was during the anatomy ultrasound, an ultrasound later on in the pregnancy, or after the birth of their child, most people in the CDH world say that is the moment when their world changed forever. For the most part, that’s true for us as well. However, for me personally it didn’t become truly real until October 8, 2014. That was the day that I allowed doctors to poke holes into my body and put an experimental balloon into my son’s trachea in an attempt to give him more time and better odds at survival. That was the day that I went to the hospital and underwent the FETO procedure in an effort to give my unborn child any extra chance that we could give him. That was the day that a completely different person emerged to take over the life that I once had.
It’s so crazy what difference a year makes. Back then I remember waiting to be taken back for the FETO procedure and being terrified yet excited, worried yet hopeful. Overall I felt committed and determined to do whatever it took to give Luke whatever I, as his mother, could give to assure that we would feel that we provided every chance possible. I remember concentrating so hard during the FETO in an attempt to imprint in my brain everything that was happening during the procedure and thinking, “This could be what saves Luke’s life. This could make the difference. Oh please, God, let it work and make a difference.” I remember after the procedure when the sedatives were wearing off, and I recall being in pain and feeling super sick because of the wonderful medicine, the magnesium sulfate (ooooooh, the magnesium sulfate). It was a medication that was supposed to ward off labor as long as the body would let it, with the side effect that it made the rest of your body feel extremely terrible. It was also the medication that imprisoned me to my bed for the 36 hours that I was on it because it could possibly cause muscle weakness or something that would make it hard for me to walk and balance on my feet, meaning that I had to become an acrobat with a bedpan for a day and a half (I know, too much information…but it’s what happened!). At the time I thought, “How in the world do they expect an extremely pregnant woman who just came out of a surgical procedure to balance her entire body weight on her arms and awkwardly wrestle with a bedpan?” I had to use the bed rails as balance bars for my body! It was a little ridiculous, not to mention humiliating to have to call a nurse every hour (another side effect of that fabulous drug) to come and help with a bedpan. Ugh! But…I did it, because I was going to do whatever it took no matter how miserable or embarrassing it was. I was going to do it.
On October 8, 2014 we were so full of expectations and uncertainty and stressful but blissful ignorance. We didn’t know what would happen in the next few days, weeks, months, or possibly years. But we were looking forward to finding out and keeping a positive attitude. I left my job, not knowing if I would ever go back and left my home not knowing when I would return and if I would have a baby in tow or not and if he would need extra care above and beyond what a “normal” baby would need. It was the official start of our “new” lives and the end of our old lives as we knew them. From that day forward, it was full on battle mode against CDH and we were going to put up one heck of a fight for our child. It was a new and scary beginning and at the time only God knew how it would turn out.
Now, a year later we now share God’s knowledge of the outcome. We know how the story ended. I wish I could write a different ending every day, but I’m not the author of my life story or Luke’s life story. I have tried to be for so long, but it’s not up to me to compose my present or my future stories, or those of my children. So, I have to sit back and see how my story unfolds. The world isn’t as rosy as it once was, not that my world was ever really super rosy, but Jonathan and I had worked hard to build (with God’s guidance) a “good” life. We had more than we deserved to have and we were happy and content. I was ready to move onto the next step of this “good” life by building a family to love and for which to care and share this happiness and love. I just didn’t know how short a time I would be given to share my love with my first child.
Jonathan and I have talked about how these last two months have seemed like an eternity. Every day goes by quickly but also lasts what seems like weeks and weeks. Looking back on the day that Luke left our earth feels like I’m looking back to events and feelings that occurred years ago, yet still sting as if they happened yesterday. I feel like the transition back into the real world has been so arduous and slow, like trying to find my identity in a new school. It is a weird limbo that we are currently living in, a kind of mental purgatory of grief in which we are trying to find our way out. Having a child didn’t happen like it was “supposed” to happen and now I am simply trying to find a way to continue on with my new, “new” life without him and find that happiness and hope again.
So far I have started going back to Crossfit again. I have started running again. I have started hanging out with friends every now and then and have even started dipping my toes back in the educational water by serving as a substitute in different schools. To those on the outside it might seem like things are back to “normal” and I am as I once was, the same ol’ Lynsy; but, the reality is that I am a completely different person. Most days I automatically go through the motions of what I think is “normal” but it is so different now and not as easy. Jonathan may have gone back to work, just like his “old” self, but he is an entirely different person as well. This is our new world and it is so contrasting to the old reality. Those pre-October 8, 2014 people seem like total strangers to me.
It has been one year since our world was unofficially officially altered forever. Many ask, do we think that the FETO did anything? Was it worth it? My answer to that is: ABSOLUTELY. I believe that it did help Luke’s lungs to grow enough to give him more time on this earth with us. I believe that it gave Jonathan and I the extra time that we needed to catch a glimpse of what Luke’s personality was and could have been. I think that the special, tiny balloon gave us moments with our son that we would not have had otherwise, and we are forever thankful that God gave us those opportunities and that precious extra time. If we had to do it over, we would do it all again in a heartbeat, every single, stressful step.
Today is October 8, 2015 and we are totally different people than we once were. We are now parents who are trying to figure out what to do with our lives while missing a piece of our hearts. But we are focused on surviving while we have this time on earth and getting stronger, living life as it comes at us day by day, minute by minute.
babylukeblog 