Regrets

I am part of a support group for parents that have kids with the same diagnosis as my son. I have been part of this group for about two years now. And there are “veteran” moms who have been in this group just as long as me. And then there are moms who are just barely starting the group with a baby under one years old and some who are pregnant with a new diagnosis.

I am contemplating on removing myself from this group. I initially joined it because there were a few moms on there that were really helping me through this journey… through the process of having a sick baby. I was able to go to them and ask for prayers… ask for help when I had doubt, ask for their opinions when I had questions. It was very uplifting and I was hopeful.

Well, lately, there have been a new “breed” of moms in our group. So many moms that are just so fearful, bitter and angry about their children’s diagnosis. Moms who have no hope in either themselves, their children or even God. And it has been so frustrating to me to continue to be a part of this group.

You see, we are still in the fight for life with our son. We still fight every day to keep him healthy. Every second of every day I am praying that he just gets through the day without being in pain or getting sick. Every day I stay as positive as I can to just get through getting out of bed, then get through the morning, then the afternoon and eventually the evening. And then, as much as I dreaded the day and can’t wait for bed again. I can’t sleep. And most days, I would go to this group and talk to all the other moms who are also still awake with their sons who are also projectile vomiting and are just chillin til the next bedding or pajama change… just like me. We got through it together.

But there are moms now who …. I just can’t believe exist. Moms that regret their decision to save their sons. Moms who regret their decisions for intervening during pregnancy. Moms that regret going forward with treatment in the NICU. And moms who wonder or question themselves about continuing treating their sons. I just can’t……

I can’t….

I can’t surround myself with people like that. I can’t continue to be a part of a group that is so tired of their circumstance that all they talk about is ending care so their misery will be over. And I am not talking about their child’s misery, I am talking about the mothers. Moms who just can’t take it any more. Moms who give up on their children. Moms who just “can’t”.

I understand it is hard. Trust me, I know. I know more than these mothers about how hard it is because I am at least a year ahead of them in this journey that we are all traveling. We are all on the same darn road. We have all been there and done that. We have all made those horrible decisions and wondered if it was the right one. We have all screamed out our child’s name as they were coding or their lungs were filling up with fluid and had to be intubated in an emergency. We have all sent our babies off to surgery wondering if it was going to be the last time. We have all held our babies for what we thought would be the last time. We have all been there.

But I have never been in a place where I thought to myself, “I can’t take this anymore, I give up on my baby, I am just going to stop all of his cares and let him go now.”

Now, I want to make this point clear though… I understand about palliative care. We were once given over to this special team. I understand that some families have had to make that decision about continuing care. We were one of those families. I understand that some parents have to decide what is actually best for their babies, and sometimes they must choose letting them go in peace. I understand that sometimes it is just too much for their babies bodies to go on because their babiea are just yoo sick. I understand that for some, life just can’t continue. I understand that sometimes it is just better to let go. I completely understand that. I believe that some parents have to make those decisions.

What I am writing this post about… are the moms who are not even close to making those decisions… moms who have pretty healthy babies considering their diagnosis…. moms who have a bad day and suddenly the whole world is falling apart…. moms who just can’t. Moms who are so full of fear and worry and just can’t seem to keep it together. Moms who just can’t and choose to give up. Those are the moms that I am writing about. Because when it comes to your kids, how do you not just keep going? How do you not have hope? How do you give up on your kids?! All because “IT” is too hard. It is those moms that I don’t understand.

One mom I am referring to is so traumatized about all that she and her son have endured that she has contemplated just stopping dialysis. Dialysis keeps her son alive. Dialysis keeps her son as healthy as a kidney kid can be. Her son is doing really well considering how sick other babies do… but because it is “too hard” she is thinking about just stopping it. I just can’t imagine what the heck is going through her head… why would she do that?? Why would she think about just letting im go??

She says “i love my son so much, i just keep thinking if i made the right choice. i keep thinking if we should continue his care. if that would be better…”

ummm.. better for who?? you?

yes, this special care/special needs life is HARD!!! But that is your son, that is your child!! I just can’t fathom the thought. I can’t fathom the idea of just letting my son go and watching him die this horrible death because it is too hard for me.

And then there is another mom… she received a prenatal diagnosis. And she refused to intervene. Not because it was all in God’s Hands or because it was a belief thing or any other valid excuse. She just didn’t think it would be worth it… Her sons prognosis was much better than ours and many others. It was detected early enough to where she can have a pretty healthy baby boy considering… but she chose not to. To the point where doctors were trying to convince her to go forward with intervention…. not termination like some of us were offered.

And then months later in her pregnancy she came to me and asked if i thought she made the right decision with not doing anything. I was gentle… but I didn’t lie. I told her that at the time she could have done something to save her son. And I just didn’t understand why someone would NOT do everything that is possible to save their baby. The positives actually outweighed the risk… the positives outweighed the negative… why look at the negative percentage that was barely present? I told her that I just didn’t understand. But now that she is way past the point of delivering a healthy baby… she needs to come to terms with that fact and begin to live in the now. Love her baby boy now. Treat him like he is here now. Live like he is here now. Cherish him being here now. Because who knows what God’s plan is.

… she delivered her son a couple of days ago and he passed away three house after he was born.

I just can’t… I know this is me being judgey (if that’s a word) and me being a little upset about other peoples decisions but I just can’t. I can’t surround myself with people who make those type of decisions. I need to be around people who are hopeful. people who believe in miracles. people who pray and make good decisions.

Lord forgive me for being judgemental. Forgive me for being selfish. Forgive me for thinking and writing this… but i am in the midst of this difficult life too and I need to see and be around like-minded people. Lord help me. Forgive me….

But I just can’t.

xo

 

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