I apologize in advance for the brutal honesty with which I am writing this post.
I have been struggling for the last several months. I thought that with the hospitalizations becoming more infrequent, and our life starting to become slightly more normal (whatever the hell that means), that things would start feeling more normal.
But the truth is, since we have had more time at home, we finally have the time to process what we have been through in the past 23 months. It has been a long, hard, 23 months.
When Luca first got sick and throughout her transplant hospitalizations, we had so much support. But then people go on with their lives (as they should) and we are left standing in this life that we barely recognize. We try to remain positive and grateful (God knows we are). But what do we do with the not so great parts of this life? How do we handle these feelings of anger, bitterness, fear, jealousy?
Finances are stressful for us. Without going into specifics, we have great insurance but still pay for a lot out of pocket. We live in an expensive area. We depend on our family to help us financially. And I wish I could go back to school or get a job. I feel so helpless.
Luca's future is unknown. Everyone thinks that post-transplant everything is all better. But in the back of my head there is always the fear that we will ultimately lose her. Obviously we pray that she has a long, fulfilling life, but we have no idea when she will need to be transplanted. And the fact is, the transplant community is small and so we see people die waiting for an organ, die from complications. It is scary. (PS - become an organ donor if you are not already!!) We try not to dwell on it, but it is a worry no matter how much we try to avoid it.
And while I am not proud to admit this, I will because it is the truth. I constantly feel envious of other people. That other people are having more kids. We want more kids - but unless we want to risk repeating this process with another child, we cannot have more kids naturally. It absolutely kills me and my heart hurts because of it.
That people are buying houses, cars, and do not have to worry how to pay for their big costco trip for diapers in the next two weeks.
That other people can take breaks from their children without arranging for meds and training someone to take care of things.
That other women can work out regularly and do not look 4 months pregnant. (Related - twice in the past 3 weeks I have been congratulated on being pregnant. Double punch to my gut - one for the fact that we are not having anymore kids naturally, and two because I cannot get rid of this stinking belly).
That other people do not have the constant task of managing a medically fragile child. I feel like I am a slave to everything to do with Luca. Managing her appointments, therapy sessions, exercises, paperwork, insurance, medication refills, future. It takes over my life and I feel like I have to fight to retain any part of me.
I love this child and will continue to fight for her. But sometimes I just wish this fight did not take so much out of us.