Tuesday, July 17, 2012

Brutal honesty

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.


  1. No apologies necessary, mama. Everything you're feeling sounds perfectly natural for someone in your circumstances.

    I wish I had more words of wisdom, words of comfort. Instead I will send you lots of hugs from afar.


  2. I think all of those feelings sound entirely justified. You never know what life is going to throw at you- some people are just dealt more difficult circumstances. Hopefully you are able to find a balance between taking care of Luca and taking care of yourself soon.

  3. You are definitely justified in those feelings.

    I thank God every day that our baby boy is healthy. And when I read stories like yours, I'm reminded of how awesome a mother's love really is, and how strong the human spirit can be. But if there's one thing I've learned about dealing with jealousy, it's that everyone is fighting a hard battle - somewhere in their life. It may look all roses on the outside, but somewhere, or at some time, it isn't or won't be and you'll be thankful for all the blessings you DO have in life.

    It's good to vent though. And you're right, once people go about their lives and you're stuck dealing with the day to day, it sucks. I've been feeling that way lately about my grandpa's death. Lots of support when it happened, but now it's up to me and very few other people to comfort and help my grandma while still dealing with our own grief.

    Hugs to you guys and just know that you're an inspiration.

  4. Thinking of you! Even though our situations are different, I can sympathize on many levels - if you ever need to vent, I'm here.

  5. "Today may there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

    Don't ever apologize for what you feel. I'm sorry things are rough right now but know you are so much stronger than you recognize.

  6. My heart hurts for you. It’s not fair. I would hope that I could be as strong as you are if confronted with something like this, but in reality, I don’t think I would/could be...

    As a side note...I do work out regularly (sorry!) and still have a belly...it wont go away no matter how many sit ups I do...

  7. I am always so amazed at you guys and what you have been through and continue to go through. Your strength, determination and love is amazing. A.M.A.Z.I.N.G.

  8. I hate that life is so unfair. I don't say that imply life is unfair, suck it up and deal. Not at all. I went through some struggles with conception recently, and all I could think about was how unfair it is that some women get pregnant without a thought or a single struggle. And others devote their lives to it for a time with no success. It took so much out of me, and I was just so angry that life isn't fair. That's how your post made me feel. Why do you have to deal with so much more than other parents? Why does Luca have to have this health issue when most kids are healthy and carefree? It sucks, and I'm sorry it is that way. :(


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