I really am not sure about blogging anymore...I just don't seem to have it in me to do at this moment...which is odd.
We had some great news from the hospitals growth and development clinic we went to last week with Faith. We were told that she is within the normal 6 month old range in her development. I asked them about what we had been told in the beginning...with the brain damage. The neurologist told us that we wouldn't see the damage until she was between 1 and 1.5 years. So, I asked the dr on Thursday if we still have that to look forward to, and we were told NO!!! We would have seen the signs already if there was going to be some physical disability!!
We were told that she would not be apro athlete, she may be clumsy, but she will run, she will walk, she will talk...she will go to school!! That was really exciting to hear... We also have scheduled an appointment to get a mickey button put in, so we will have no more scares with the tube!!
However...
I am really happy, don't get me wrong...I have debated about posting this or not...here goes...
I am really angry...I don't know if this is 6 months worth of frustration that is finally coming out? or if I am just realizing what we went through...and it is just sinking in...
We were told to "kill" our baby...sorry, "let her declare for herself"...this was from the ethics team...we were not told this once, not twice, but so many times that I cannot even remember... I am so angry that they gave us no hope...I am so angry that they put us through hell and back with the "possibilities". They told us that her brain damage was severe, she was going to 100% have something wrong from the damage. They made us think that a feeding tube was the worst possible thing to come home with...that it would hinder her life and the quality of it...
I know that she is a huge miracle, she is a testament to our faith and everyone who stood by us. She has and definitely will continue to change people...show them what hope and faith can lead to in the end. Everywhere we go, they comment on how beautiful she is that she has the most gorgeous eyes... I am her mom and I am biased, and I know that...
But, I cannot imagine what our life would have been like if we had made the decision that they thought was "ethical". I can't imagine the sorrow and grief we would have unnecessarily gone through. I hate to think about the parents who are in that room at the end of the hall, who are being put in the same position as us, and may not be strong enough to stand up to the "team". I wish that I could go and sit by the doorways and just tell everyone, that with hope things are fine...
Blah, I don't know why I am feeling like this...I am trying to find the ethics lady's name so that I can send an email to the committee and let them know how our situation was handled...and how they need to change their approach. But then, I feel like I shouldn't do that either...that it is just going to be stirring a pot...that is better left untouched...what a day...what a week, what an ordeal that I am realizing I am not quite done with yet...
I think you should find the ethics lady and give her your testimony. Although I understand why you feel the way you do especially when you look back. You must remember...they gave you man's report and to them that was their truth...But you and your husband and all of us who prayed for you and with you believed a different report. That is why you can write about your frustrations and looking back you can say they were wrong....but God orchastrated this experience...so you could give others hope.....always remember that.
ReplyDeletePraise be to God who has given us the victory...and that victory was given so you can witness to others....
Just my thoughts...lol.
That's an AWESOME repost about Faith, and yes...I'd find the lady's name and let them know how you are feeling. You need to feel heard in this situation. I think it will help you to be able to find some semblance of closure on that portion of your journey. Thinking of you and your family often.
ReplyDeleteRuth i could tell you this on the phone too...
ReplyDeletethe paper would be a good place to start with your story so that a family in the situation you were in may read it and make the strong decision and not lose their baby but on the other hand what if someone reads it that wasn't strong enough to stand up to the ethics commity. I think that we should pray for families making this decision every day, for strength in couples facing the meetings that you had to face and pray that the ethics commity and hospitals are careful and not so concerned with law suits that there be compassion.
talk to ya soon
love cheryl
Hey Ruth
ReplyDeleteI can't say I understand what kind of angry feelings you are going through right now but I do agree that you should write a letter or speak with the ethics committee- tell them of your frusturations but more importantly with the purpose of sharing Faith's testimony. I do agree with Dedrie, that they gave you mans report and it was THEIR TRUTH and they acted upon what they could see but...........
share what our God has done, show them HOPE and VICTORY that they may never have seen!
I'm so glad to hear that Faith is doing well! And you? You, Ruth, have every right to feel what you're feeling. I think writing about it will help you sort it out. Write out your story. Write that e-mail to the ethics lady. If you're not sure about sharing what you write, sit on it a few days and then go back, read it again and go from there. Just processing the feelings you have and putting them into words may help you through the anger you're feeling and give you some peace.
ReplyDeleteI totally get what you are angry about, and the frustrating part is that this kind of stuff happens all over the place. My mom was total 2 days after the stroke that the way she was then was the way she would stay. Totally wrong report. Drs' think they got the answers but they ignore other experts.
ReplyDeletePraise God for Faith's recovery and thank you Mom and Dad for not giving in to the pressure!!!!
Ruth, in my experience working with doctors around Doug's illness it was very cathartic for my anger to actually let the doctor know that he made a mistake and it cost us dearly. Doug almost died in the ICU and couldn't drive for nine months because of the seizures his withholding of treatment caused. Tell the doctor. It's the only way you may help the next struggling couple.
ReplyDeleteHeather
Ruth I am moved so much hearing Faith and your families miracle and testimony...don't stop telling it because there are SO many out there who need to hear it and they need to hear ALL of it...even the angry part cuz that is real and God is seeing you through that too! I also feel it is a great idea to write the hospital and the ethics lady...they need to hear your story and hopefully it will help someone else! plus like Xangelle said you will know that you are heard and that is so much of the healing process!
ReplyDelete