The Peanut Gallery

Thursday, May 21, 2009

If you don't have anything nice to say don't say anything at all

Thursday, May 21, 2008
I absolutely love being a blogger! I love maintaining my daughters blog and being a blog follower. It is such a nice medium to share your life with others. I know that my blog allows people a snapshot into my life, but that's all it is - a snapshot. I understand that people may have their own opinion about what I do with regards to Kennedy, however as our mothers used to say: "if you don't have anything nice to say, don't say anything at all"!!!! I was blindsided earlier this week with a nasty e-mail from a fellow blog follower. Just to set the story straight - My husband and I are doing the best we can with the cards that were dealt to us. We are doing everything we can to support and help our daughter live to her full potential. I am just not sure why people find it necessary to be so negative and evil. Brian and I were deeply offended and hurt by the following e-mail we received from :

You don't know me, I just ran across your blog as I often look at them because of my own child I lost. It is a very hard situation and family and friends tell you what you want to hear, not what is best, because they don't want to hurt you. A nurse finally sat me down and talked HONESTLY to me about what I was putting my child, my husband and the rest of my family through. It hurt, but you know the truth hurts, but as the Bible says, it will also "set you free." Why are you doing this, more of the same over and over again, it's a life sentence. It would be different if there was light at the end of the tunnel, but you KNOW there isn't.
You say that "your daughter is the strongest person you know. You say "she has and continues to endure more pain then most people do in their entire life. She has the uncanny ability to fight and a will for life that you don't think most of us possess." It is a very sad situation, but is what you're doing best for your child, or what is best for YOU. The machines are doing the fighting, NOT her. Her will is to go home to be with our Lord, but medical intervention keeps stepping in and preventing it. She has tried to show you what she wants multiple times, but you won't let her. Why are you trying to stop this baby from being led home to the Lord, where she can FINALLY have some peace. Stop the pain and suffering for this poor poor baby. Do you know what it is like to struggle to breathe and to have air pushed into your lungs. It is horrible and you are forcing Kennedy to endure this repeatedly, as well as the pain. I understand, trust me, I have lost a baby, it is not easy. But we do it for our own SELFISH needs, not what is best for our child. I am sure she does not want to continue living in these situations that she is being forced to tolerate. It is so unfair for you to continue to put her through all this horror and pain, because you can't handle not holding her, dressing her up, taking her places and pretending everything is normal. You say in your eyes she is perfect, well very sadly, she is not and you know it and it is time you stop pretending and face what reality is. You say you worry about what you will do without her. You have fought a good fight, but she is tired and she is not here to satisfy your needs, you are here to satisfy hers. I did the same thing with my first one and finally realized after 2 years, it was the most selfish thing I had ever done. Hopefully you will find some peace and realize it before she suffers more needlessly. Let her go and stop the insanity.
I continue to pray for wisdom for you and peace for Kennedy. Good luck to you and hopefully your baby can finally rest in peace. Life does not seem fair at times, like you have mentioned "WHY ME", why is this happening to me". I believe if Kennedy were able to convey her feelings, she would be saying "WHY ME" because this is happening to HER.
I hope this hasn't hurt you too much, it sure hurt when the nurse spoke to me, but when I took the time to really truthfully and logically think about what she said, it all fell into perspective and I was more at peace with the truth and reality of the dire situation at hand. I let my child go with peace and dignity, instead of forcing her to live for my selfish needs. I can hold my head up high knowing she is at peace without pain and suffering like she went through for the first 2 years.
Peace, love and God be with you.

I don't feel that I need to justify our decisions. For gods sake - if we would have listened to the doctors advice in the beginning Kennedy would not be here with us today, which would mean that we would have never had the chance to spend five of the best months at home with her. We are doing our best, there is no book that tells you how to deal with situations like these and I would appreciate it if you kept your negative opinions to yourself. If I do say so myself, Brian and I are doing pretty damn good!!!


Danielle said...

While she says that she does not intend to hurt you, how could someone how CLAIMS to have been in your position say ANYTHING to add to the pain and heartache you already experienced. Also, for someone who quotes the Bible, she obviously does not believe in the power of prayer.

Daxton's Personal Assistant said...

So sorry for the rude comment. No two situations are exactly the same and can't be compared as if they are. I can personally say my son lived through what I would consider months of hell, but you could never tell by looking at him... He's the happiest, most content child I've ever met. (This is the same child that, had he been born in most hospitals, they would have never even tried to save...)

I believe as parents we are put in situations and we have to do what is best for our children and our families, and we alone have to live with those decisions. It is never okay to force those decisions on another family whose battles are not the same.

We'll be coninuing to pray in TN!

Jennifer said...

Stephanie, I am so sorry you had to read an email like that! She didn't mean to hurt you she says, but she said some pretty heartless things!

You know that what you are doing is in the best interests of your whole family. Like Mollie said, we too put our son through living hell just for the opportunity to get to know him outside the NICU. I too, wondered at my actions because being on the vent for 8 weeks has to be a horrible experience...all the iv's, blood transfusions, surgeries. The list goes on! But we have no idea what God's plan truly is in these situations and until it is laid on your heart to let go, you continue to fight for the chance for our kids to live! Liam is such an amazing little guy and makes us laugh and smile all day long! As Kennedy has done for you! We can't begin to imagine the plan God has in store and if he didn't want her here, He would've take her!

If/when God reveals that you should let go, it will be your choice to make and not because someone else thinks you should make it! It's your child, your family and your choices. Don't let her email upset you. She lost a child and did what she thought was best for her and thought you might benefit from her experience. And I bet you already have! =)

We are continuing to pray for you guys and pray Kennedy gets home soon. Kennedy is a tough cookie!


ThatsMe!! said...

I am sorry, I can imagine how hard that letter is for you to read...I know that you guys doing what you as her parents feel is best for Kennedy..
I agree with Jen that when and if [God reveals that you should let go, it will be your choice to make and not because someone else thinks you should make it! It's your child, your family and your choices.]
My heartfelt thought and prayers are with all of you ...

Derek said...

Steph and Brian,
I'm so sorry that some people are that inconsiderate. I fully agree with Daxton's Personal Assistant's comments "No two situations are exactly the same and can't be compared as if they are." It is definitely unfortunate that this person had to make the tough decision to take her child off of life support, but as Jennifer brilliantly put it –“it will be your choice to make and not because someone else thinks you should make it! It's your child, your family and your choices.” To prove this woman (who has no hands on insight to Kennedy’s situation) wrong again, Kennedy herself proved she wasn’t ready to go by successfully adapting to the conventional vent and soon she will prove that she can breathe on her own as well. Don’t fret over one extremely insensitive and inconsiderate person. Just remember, you not only have an army of people that you know supporting you and your family, you have tons of people that have never met you both and especially your precious Kennedy that are thinking and praying for your daughter every day.
I am truly honored to be the Godparent of such a wonderful and resilient child, and to have you as my friends.
Love you all

Jenni said...

Stephanie and Brian,

You two are doing an amazing job. Don't let someones negative comments get to you.

Crystal said...

I keep up on your blog and I am just so stinking sick to my stomache. I am a nurse myself, and a pediatric nurse at that, 2 of my private patients are in persistive vegetative states with G-tubes and Trachs, and no matter what I want whats best for them, they are living and we must provide whats best for them. I admire you and Brian, and know that you are amazing individuals and the best parents that precious kennedy could have ever been blessed with. I asked corrin awhile ago to email you and let you know that I am here if you NEED ANYTHING... I have alot of resources because I am in the field and take care of medically fragile children.

Lots of Love,
Crystal (Corrin's Friend)

Hollywood1983 said...

Hi Stephanie,
I am so so incredibly sorry for what you are going through. I can't believe this person felt the need to 'pour salt in your wound.' It's not any of her business what decisions you make for your child. I really admire your strength and it is very, very clear how much love you have for your baby girl. I've read your blogs and have never, ever once thought you and your husband were being selfish, it is extremely clear that she is your world, in fact, you are extremely selfLESS. I can tell there are so many people who support you and I hope comments like that one don't bring you down or cause self-doubt. I will keep praying for you and your family!

Our little Miracles said...


No one can tell you what Kennedy is thinking. You are her mother and you are the one closest to her. Only you truley know what is best for her. Even the Dr.'s and Nurses should be telling you that... I know they tell me that all the time about our son.

Many prayers for Kennedy and your family.