This week, Friday, is the big day - trachea reconstructive surgery #2. It's hard to put into words all the things I'm thinking and feeling - heck, it's hard to even make sense of it in my own head. I have found in the past when we are going through hard things, that it's somewhat therapeutic for me to write and get some feelings out, so here it is. Whether or not it will make any sense, well I guess we will see.
Basically, I'm ready to get it over with. In April we found out she would need this surgery, and since then it has been haunting me and recently it has literally been consuming even my dreams. It's been a very fun summer, and I've successfully been able to mostly put it aside, at least all the emotional side of it, which has been really good because I've really loved and enjoyed the last few months with my family. The down side though is that now it's time to let the emotions and anxieties come so I can work through them, and in a way, let them overwhelm me so when the surgery is here, I'm geared up and ready to face it completely.
I've learned over the years with Eden, as the anticipation builds for a big surgery, the weeks prior are always some of the worst. My mind races with the practical things to prepare - like travel arrangements, packing for an undetermined amount of time, someone to take care of the dog, etc. and then it's made foggy by all the emotional confusion. The emotions are always the anxieties of what's to come, but also the haunting reminders of the emotional toil from the times past and knowing that somehow I have to face it again.
In the past I built a lot of emotional walls - coping mechanisms to get through. Those first few years of Eden's life were so incredibly intense. It was one major thing after the next (literally for years!) so in a way it was almost easier to cope because I felt I never really came out of the fog I didn't even know I was living in. It's been a couple years now since her last major surgery of any kind. We've had two healthy babies, vacations, preschool, dance classes - normal life. These things have healed wounds, but also makes the reopening of them incredibly scary. Dealing with this upcoming surgery is not just facing the emotions of this experience, but it is a horrible reminder of the life we used to live too.
That "old life" filled with surgeries and hospitals and countless doctor appointments was, in the practical sense, much less complicated though because it was just me, Brad and Eden. Brad was there for everything he could be, and he was amazing at maintaining his career and keeping our household afloat so I could focus 100% on Eden and doing everything she needed, physically and emotionally. This time though we have to do those things and also take care of our two other babies. It creates some complications that have made this already emotion packed event even harder for me.
Ok, so I know in the end it's all going to work out. Neither Bentley or Olivia will be emotionally damaged or scarred because of this experience - logically I believe this to be true. But with that being said, I've still stressed over how to still provide for them and be there for them and Eden at the same time when they are all in different places. It's made me feel torn in ways that I haven't had to deal with before. Olivia is nursing and I've stressed over how to make sure she is fed around the clock, but she can't be in the hospital with Eden where I feel like I need to be so who do I choose? Bentley will be confused and wondering where we all went. Poor guy will just have no idea what's going on. I'm not good at asking for help, but this time I've been forced to ask because I can't take care of all three of my kids at the same time. That thought alone is heartbreaking to me, but then I also feel like my burden is now having to become someone else's too because I can't care for them alone.
Having life interrupted in this way is hard enough, and then we are away from home and our comforts. Dealing with medical issues is so scary and completely out of our control, and we don't even have our home to find solace in the late nights, or some semblance of "normal life" to help bring peace after emotionally draining days. I wish we could be home, but unfortunately that isn't a choice we can make.
With all that being said though, I feel so blessed that since we have to be away that we are headed to Denver. That Children's Hospital is amazing. We have had top notch care and resources available to us. And even more important is that we have family there who do their best to support us and help us feel as much at home as possible. It is a tremendous blessing and one I don't ever mean to sound like I take lightly. I do believe it's a tender mercy from the Lord because it has helped us tremendously in the past, and will be even more important this time now that I have Bentley and Olivia. My sister in law Stephanie has graciously offered to watch Bentley every day, and Olivia too if she'll take a bottle. I'm so grateful for her willingness and the fact that I feel such a huge burden lifted knowing my kids will be loved and cared for when I can't be with them. I don't think I can even portray the depth of my gratitude for her.
People lately have been asking how Eden's doing and if she knows what's going to happen. The short answer is that she knows she will be getting surgery to try to take the trach out. We have not shared any details beyond that though because it will just create fear and anxiety in her that she doesn't need. She is actually really excited about the possibility of the trach coming out because she wants it out so badly.
When we took the trip in April, we went in to that one almost sure we were coming home without the trach. We were all completely blindsided by the news that the trach wasn't coming out without surgery. So with that being said, she went on that trip too thinking that her trach might come out. We didn't make a big deal out of it then, just in case, and I'm glad we didn't because the worst case scenario came true. Since that trip, the discussions we have had with her is that we are working with the doctor to fix the problems that still exist and we are working on a plan to get the trach out.
Over the past couple months Eden has had several emotional breakdowns about her trach. Each one usually stemmed from her realizing that she couldn't do things other kids could do (like going down the water slide, or sleeping without machines). Sometimes it's in that moment of jealously that she comes to me crying and saying it's not fair, and other times it's when I lay by her at bedtime and we talk about her day and she starts to feel sad and ask questions about why she has to have her trach. All I can do is validate her feelings and then let her know that every one has hard or different things in their lives. She is usually reassured knowing that we are working on a plan and hopefully her trach will come out soon.
What I can't let her know though is that the jealously she is feeling is something I'm feeling for her too. I feel sad for her and my heart breaks when I see her sad about something she can't do or insecurities she has because of her trach. I'm jealous for her that all her friends are starting kindergarten and exploring all these fun new adventures in life, while she has to wait for kindergarten because her life is going to be really hard and complicated for a while. I'm sad that she is experiencing feelings of jealousy and I'm frustrated and heartbroken because I feel it too for her sake.
I love her so much. She is such a strong and courageous girl. Since day one of her life she has proven to be a fighter. Her spirit is strong and I believe she has Heavenly help to get her through days like we are about to experience again. I am scared for her though. I am scared of the surgery and the possible complications. I am scared of the recovery. Unfortunately though, this is the step necessary if we want this trach to ever come out. Now it's just time to get in there and start the process. I have a couple more days to work out my crazy emotions and then it's go time...