Emotions

I am not typically an emotional person. I think I did the girly, dramatic, over reaction bit in high school and college and realized that it is exhausting. These last few months though, I've been a ball of emotions. I've been stressed, depressed, and quick to anger. I've felt alienated from the world, even though I purposefully minimized my contact with people.

It's been odd to experience so many feelings all at once. I didn't really know where it was all coming from. And then I turned to my trusty liver parent groups and realized that I was going through the normal set of post-transplant emotions. Up until and through Jaisal's transplant, there was a focus, a purpose, adrenaline, an end goal that kept me going. Even immediately after transplant, we had the BiPap to deal with, RSV, and our trifecta of viral infections. Lately though things have been normal. Which is great, but I think my defenses finally came tumbling down and the magnamity of what we have gone through and what our future holds hit me.

I mean our kid had an incurable condition and needed a transplant of the largest solid organ in his body to have a chance at life. And I couldn't give him a liver. And Kirk tried to give him part of his liver and couldn't. And there were no offers from cadaver donors. And then we had a liver from Scott and we went through a massive surgery. That in and of itself is an insane experience, but then we dealt with his paralyzed diaphragm and other complications. I honestly can't even really remember that month in the hospital and am not ready to read my posts from then.

I think in the last few months my head and my heart started to process everything we went through. The outcome of this processing was not pretty (from an emotional perspective) until I realized where all of the emotion was coming from and began to deal with it. Lately, I've felt more balanced and more like myself.  Then I realized that our clinic last Thursday was going to be at the new Lurie Children's Hospital, not CMH, and I distraught all over again.

I am not the first parent (or even employee) who's felt some angst over the fact that CMH no longer exists.  CMH has been our unwanted second home; in Jaisal's 21 months of life, we've spent 65 days (more than two months) living at CMH and countless more hours going to clinic appointments or getting labs. CMH is familiar to us. We know the ins and outs. We know where everything is. We know how to keep Jaisal happy. We know where to eat, where to park, which recliners are the good beds, what goodies we can get from the nourishment room and Child Life. The list goes on and on. When you're dealing with emotional and traumatic situations with your child, familiarity is one of the few things that can bring you comfort. With the new hospital we've lost all of our familiarity.  

Don't get me wrong, I know the new hospital will be nice. There will be better equipment and each patient will get their own room with comfortable parent sleeping spaces. But that is really all the positives I can see right now. I was not thrilled with the new clinic rooms. The space felt sterile and isolated. At CMH, we always picked a room with a window so we could see people outside in Lincoln Park. I think all of the clinic rooms are interior rooms now.  There is no art on the walls in the new rooms or decor of any type. I never realized how much I liked seeing the pictures colored by kids at our appointments. At CMH, I usually left the door open so I could see other liver parents and Jaisal could wander the halls. I felt kind of safe doing that since all the other families around in the immediate area were transplant families. The new clinic space groups transplant together, but is surrounded by clinic rooms for many other specialties. It doesn't feel right to let Jaisal wander in that area now. The new waiting area for clinic is nice and Jaisal loved the toys, but it's the waiting area for several other clinics and the lab. That's a lot of people and definitely does not put me at ease when we have to wait out there for a half an hour with my immune suppressed kid.

I'm sure I'll grow into knowing and liking the new place. Although if Jaisal continues to be stable, we may have no or very few inpatient stays, and we may not get to know the new hospital (a great problem to have).  Through this whole transplant journey, I realized that among a host of strong emotions, one focus of those emotions is an attachment to CMH. A true love hate relationship if there ever was one. I'll miss that ugly building, the horrible patient rooms that never had enough outlets for modern life, and the small TVs that always seemed to have inferior signal strength.

So, even though we had clinic at Lurie's last Thursday, I took Jaisal to CMH one last time for labs and let him do all his favorite things at the hospital. One last visit to 6W. I'm hoping that will be enough closure so that I can stop crying over a building.

Yup, I was right long ago, this whole emotional thing is exhausting.