Seattle, WA, USA

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Two years later and we're never going to be 'okay' again.

July 12, 2019

We did it. We survived our second year post-transplant. I am just going to take a deep breath and read that sentence one more time.

I remember sitting down at my computer this time last year and thinking, 'next year I am going to have it all together. I am going to know exactly what I want to say.'  Well, here we are and I yet again find myself at this computer, unable to come up with adequate words to describe where our family is now.

 

 

Let me start with the easy medical stuff. 

 

 We had an ultrasound, labs and clinic on Tuesday. The transplant team told us that Hudson's tests look perfect! His anti-rejection medication level was a bit high but we are going to do repeat labs in 2 weeks to see if it was a one-off before making any dose changes. 

We are going to discontinue one of his meds! This is a trial run to make sure his liver is happy without it. When we check his Tacro level, we will also check to make sure his liver is still happy without this medication in his system. If all goes well, he will be permanently off urso! He has been on urso since he was born so this a big deal. 

 

 We have had conversations about immunizations with the transplant team for over a year now. At this visit, we decided that the benefits outweigh the risks when it comes to the MMR & Chicken Pox vaccines. We are going to give Hudson the MMR vaccine first and then check in 3 months to see if his body created the needed antibodies. There is a 50% chance that his body creates the MMR antibodies. 

 

The biggest news to come from our clinic visit is that we do not need to have a clinic visit or ultrasound for ONE YEAR! Up to this point, the longest we have gone without visiting the transplant team has been 4 months. Cheers and fingers crossed that we don't have to see the inside of that clinic room until July 2020!    

 In honor of Hudson and Trevor's transplant anniversary, we also partner with a fundraiser to give back. This year, we partnered with the Liver Baby Foundation. This is a non-profit organization started by another liver transplant family that provides financial assistance to transplant kids/families across the US. This is a very deserving organization and your donations help very deserving children. If you haven't had an opportunity to check out their mission or donate, please visit them now at Liver Baby Foundation. I cannot thank you enough for honoring our giant milestone by donating to LBF. I believe we are at almost $900 and I would be thrilled if we could get to $1,000 before our fundraiser ends on Monday, July 15th. 

Then there is the reflective part of celebrating 2 years post transplant. I have spent the past months trying to identify and process my feelings so that I can be a better, more productive person moving forward. While doing this, I uncovered and accepted two important truths. The first truth has redefined my interactions & relationships.

 

My truth:

I am never going to be 'okay' again. 

 

Let me explain.

It is known that culturally, Americans tend to ask how people are as a generic form of greeting one another. While well intentioned, the generic, "I'm okay" response is used as a phrase to quickly move forward in the conversation or move on from the individual. I began to notice that I was leaning on this generic response as a way to either protect or avoid the emotions I was feeling. As I became increasingly aware of this habit, using the word 'okay' started feeling like a flat-out lie to myself and the person I was speaking with. Living that lie was exhausting.

 I dug a little deeper into that feeling and finally realized why I was having such a hard time with that simple word - okay

To our family, 'okay' has come to symbolize blissful ignorance and mediocrity; a luxury our family will never have. We will always be on polar sides of the spectrum, either celebrating victories (whether they be small or large) or concerned with a potential issue or situation.  Being 'okay' is no longer an option. 

I have good news though: while we may never be 'okay' again, we will be happy, sad, excited, frustrated, optimistic, proud, thankful, anxious and whatever other feeling time or a situation evoke. We will be intentional with our conversations and language. With that, I have come to accept and make peace with the fact that I will never be 'okay' again. 

 

My second truth is a little is still a work in progress and incredibly uncomfortable to throw out into the universe.

I have spoken to the amazing benefits of being part of the transplant and BA community. I have also mentioned the heartbreaking aspects.

I have been grieving the past few months as we lost another beautiful soul that deserved a long and happy life. This grief is odd because it almost seems unwarranted or inappropriate. How is it fair for me to grieve when I was able to tuck Hudson into bed last night? How can I send my condolences and offer my support when my child survived? Is it appropriate to post about how well Hudson is doing?  The constant battle between guilt & grief is overwhelming at times. The only way I have found to handle this is by accepting my second truth: 

 

The best way to handle guilt is to act purposefully and always be grateful.  

 

Reminding myself to be grateful and intentional has been the only way I can handle the unfair realties of this life and community. It is the only way I have found to continue on while honoring and paying respect to those that have experienced tragedies.

This truth has also reignited motivation to make a difference and spread good in this world. I have partnered with another liver mom to launch something that is going to be a game changer in providing help and support to every BA & liver transplant family. Our project is still in its infancy but I cannot wait to share with you when we're ready to launch!

I always end these posts thanking y-o-u, our tribe. I do this because we owe so much to you all. Thank you for helping us celebrate our highest highs and providing comfort in our lowest lows. For supporting and sharing our stories, dreams and fundraisers. For allowing us to use this platform to spread awareness. For providing comforting and encouraging words when we need them the most. And for keeping a sense of humor through it all.

Thank you for being one of the things I cherish most and am grateful for. 

 

Cheers to another 365 days of health, happiness and strength.

 

We love you all. 

xoxoxo

Jordan, Morgan, Hudson, Dude & Jax

 

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