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Tuesday, July 11, 2017

Trisomy 13- Why Would I Ever Consider Not Fighting the Fight?

 
Before anyone reads this post, I want to make something very clear. I have no judgement of those that chose or are choosing to fight the fight. This post is no reflection on anyone else's decision or pathway. This post is just my raw emotions right now in the moment. It's indicative of our pathway- the one that's right for our family. Often tone and intent get lost in written words, so I just want to be clear that I have no ill intentions with this post, nor any judgement of parents that have fought the hard fight with their beautiful trisomy children. And I know that many will be turned off by this post, but I feel the need to post it. Why? Because it's real. It's my real thoughts, my real emotions, raw and uncut. And there are other moms out there that are feeling this way. I want them to know they are not alone. 


In my efforts to better understand trisomy 13 from the perspective of parents that have chosen to fight the fight and keep their little ones alive... I posed a question to a Facebook community of trisomy families.

My question was very specific...

"Those of you with living against all odds trisomy 13 babies... I know that they are the loves of your lives. I know that you are 100% glad they are in this world. I am so fiercely in love with my baby already, so I know. But, I'm also curious as to the reality. What is your child's age, how many surgeries have they had to go through, what type of abnormalities were they born with, what is their quality of life, your quality of life, how much pain are they in, etc. We haven't even begun to figure out what our options are and what path we are taking, but before I can fathom doing so, I need some real truth from some real mamas if you are willing to share."


I asked this question because I fear I already know the reality. I already know how devastating trisomy 13 is on a child's body. But I wanted the real truth. The truth you don't read in the blog posts that are meant to be inspirational. The posts where you see a beautiful child in the picture, and a mom shouting with joy that her baby has made it to be 3 years old, 6 years old, etc... and that this is such a miracle, such a blessing. To me those posts give false hope and they instill guilt in anyone that is considering not fighting that fight.

Why would I ever consider not fighting the fight you might be asking? So very simple and I can state it in 3 words: Quality of Life. 

I do not want my child in pain. I do not want my child in surgery after surgery, living in hospitals, having a life full of therapy after therapy, or unable to lead any sense of a normal life. I do not want my child living in hospitals. I don't want it, and I won't put my child through that. It is not a question of love. I love my child so fiercely, so fully already. I would be heartbroken to let my child go, but I'd rather let my child go, than see her go through this misery. To me it is not a "blessing" to have a child alive at however old, only to have to go through the pain, the hospital stays, etc. It is not the way I want my child to live.

I kept feeling guilt for feeling this way, because the ONLY posts I see out there, the only stories are these "inspiring" stories. These "inspiring" stories that often don't have the full detail, but nonetheless they are there. Staring you in the face. Nowhere do you see the stories of the moms that chose to terminate and spare their child this pain. Nowhere do you see the stories of the moms that chose to carry to term, but to not undergo any lifesaving measures or unnecessary medical procedures. These stories aren't represented. And so, the guilt of the online world ensues.

I finally found some peace last night with my feelings. I thought of my uncle when he had cancer. He was in the MOST undeniable, brutal pain I've ever seen. I would have given anything to end the pain for him- to let him go. There is a reason we have an organization called Hospice. While none of us could "let him go" since he wasn't on life support at that time, we could ease is pain and allow him peace in the decision to stop the fight. And there is a time when every family gives in to the blessing that is Hospice.

I would never make my parents, or my grandparents, or any loved one keep fighting through if they were terminally ill, and I could give them peace. I would choose hospice and let them go pain free and as comforted as possible, before I made them live a life like that. And once I realized that, I came to peace with my feelings of leaning toward termination with little April Rey.

April Rey is terminally ill. Just because she is new- just because she is a baby... it doesn't mean she should have to fight a fight that I wouldn't want to fight for myself in that position. I would want hospice. I wouldn't want a life like that. And so, if I can let April Rey go peacefully, quickly, smoothly- I'll choose that.

If I kept her alive to fight the fight... it would be for me. And I would feel selfish. It would be so that I could meet her. It would be so that I could feel at peace with my decision. But the reality is that she needs the peace, the comfort, the ok from mama to just let go. And if she has peace, then I can also have peace. Believe me, I have zero judgement for the parents that choose to fight the fight. It's just not our path. It's not something my husband or I want for our daughter.

I remember telling my grandpa the last time I saw him face to face... "It's ok if you don't make it to my wedding. It's ok". I knew he was fighting extra for me, and for every little event he could make it to. He was like that. He'd hang on with all his might just to make all of us happy. I am so glad I got the chance to tell him that it was ok to let go. And now I want to do the same for April Rey.

Sometimes the greatest gift you can give someone is your blessing, your understanding, your acceptance.

And so I posed this question to the trisomy community on Facebook. And the answers I got were superficial. The answers I got were mostly non-transparent, and not addressing the question that I'd asked. The answers I got were all about how much these parents loved their babies, how much they'd learned to love life, what a blessing their child is, and on and on. Rarely did people actually address my real question and tell me the reality, the surgeries, the pain, their child's ability to lead a normal life, the quality of life, etc. The answers were not objective in any way. The answers clearly showed the love that they have for their children- which I was never doubting. But the lack of clear transparent answers, clearly answered my question as to the quality of life. 

I would give anything to heal my daughter. Saving her life is not the same thing as healing her, however. Saving her life for a few days or even years might be possible. But she would not be healthy. And that's a line I can draw very clearly. That's a road that is not right for our family.

So are we terminating, you ask? Not yet. My husband and I are all about getting as much information as possible. So, we are doing just that, and luckily we have a medical team to work with that is 100% on board with all of our requests, and they are on call at a moments notice and right there ready to work with us, speak to us, and more. We live around some of the best hospitals in the country, and we are taking full advantage of those resources. So, we are now on our journey to MORE information. As much more information as we can possibly get before we make any decisions.

Visit the trisomy 13 page, for all of the posts on April Rey and trisomy 13.





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