Choices

Yesterday we removed a comment from a stranger from near Clarksville, Tennessee that was hurtful and a bit crazy. This person suggested that Benjamin isn’t progressing, that he will likely be disabled and asked “when is enough enough?”. Ignoring the fact that this person is suggesting that we murder our child, and ignoring the fact that Benjamin has made so much progress and what we are looking at here is a minor setback, and finally ignoring the fact that this person obviously wanted to hurt us – it brings up good questions, ones that Amy and I ask ourselves a lot. Are we being selfish? Should the pregnancy have been terminated when Carol’s water broke at 19 weeks? Is it fair to Benjamin to fight for his survival?

When his water broke and the question came up of whether we would consider termination – the three of us quickly agreed that as long as there was room for a miracle, we would aim for miracle. We knew the risks – the doctor explained that even if the pregnancy reached 23 weeks, the baby would probably not survive and if he did he would have a high chance of disabilities. At that point we were focused on reaching that 23 week mark. But even before this, even before we were pregnant, the three of us agreed (in writing, notarized no less) that we would not terminate unless there was a deformity “incompatible with life”.

Did we feel this way because we wanted a child “no matter what”? Is it selfish to want to share your love with a child or an adult no matter how different their quality of life is? Or would it have been more selfish to say “No – we cannot take the risk that our baby will have disabilities.” Yes, part of the factor for our decision was that this would likely be our only chance to have a baby of our own. In order to reach this one pregnancy, we had to use 5 of our 7 embryos  we froze before Amy’s cancer treatment and we could not make any more. Maybe we really didn’t understand the risks involved. But I can guarantee if we had decided not to go forward with the  pregnancy the three of us would be dealing with a  guilt of a different kind.

So what did we do? We fought. We did everything we could to give him the best chance possible. Carol was amazing – she was on bed rest most of the pregnancy, she suffered through a million tests, she spent weeks in the hospital away from her children and husband. Her family was wonderful and supportive every step of the way. And as she says – if the doctors told her it would help Ben, she would do it without any explanation needed and no matter the effects to her. In the end, Carol even risked her own life in order to give Benjamin a few extra days to grow before she was rushed to an emergency c-section that we know was tougher on her than she even let on.

But now here we are – Benjamin thankfully did survive.   And we love him more than we’ve ever loved anything. Yes – he will likely have one or more disabilities when all is said and done. Will he have the life we would choose for him if we could? Not likely – but do you know what? No one gets the life they expect. Life is hard no matter who you are. Amy and I have been through a lot together and it has only made us love each other more and appreciate life more.

Even through all of what Benjamin has been through already, I have seen him smile in my arms like a kid who’s won the lottery; I’ve seen him melt in Amy’s arms like all his troubles have disappeared; and I’ve seen the excitement on his face when he gets his bottle. This kid is going to be fine – in fact, this kid is going to be great!

How can I be sure of this? Our lives are now focused on it: Making Benjamin’s life the fullest, loving him with all our might and surrounding him with people who love him. I know this isn’t any different from what any parent does and that is what makes it wonderful. And it also, despite any challenges he may face, makes him a lucky kid.

Benjamin will lead a full life. He will have challenges, no doubt, but like it says on the top of the page – he’s one tough kid. So yeah, we wonder if we made the right choices, but we don’t wonder for very long.

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46 thoughts on “Choices

  1. Whatever that comment was, it’s gone, and more importantly, it’s completely irrelevant…to you guys, to Ben, to your life. That person knows nothing. Benjamin is a beautiful little guy who is lucky to have found you. Plenty of people have beautiful lives with a lot less than he has. I can’t wait to see him again and I know you’ll all have a happy life together. Big hugs!

  2. WOW! I didn’t know ppl cpuld be so cruel! Your leter has me in tears actually since yesterday when I read yesterday’s post. I read all that you wrote but all I saw was Ben’s smile and it hurt me because he is a FIGHTER! I felt so bad for sendinga pic of Goo while you two are being the best parents you can for your baby. I felt bad cuz you are having some set backs that I KNOW Ben will push through cuz he always looked like a strong baby to me but I didn’t mean to send a pic of mines in bad harm I wanted to let you know that I LOOK FORWARD to Ben’s pcs on here and hopefully in a photo I’m probably not making sense but this post is kinda upsetting not by what you wrote but what that peron had written! You guys ARE NOT selfish in fact you guys are being VERY selfless cuz you know IF watever his outcomes will be that you have his back NO MATTER wat! I love how you both shower him with so much love I LOVE seeing Ben’s smile seeing his dimple! That person has their opnion but should have kept it to themselves cuz in the long run it is YOU and AMY who will be tending to Ben, it is YA that will show Ben that he is SPECIAL for more ways than one, YOU have ever bit of right to have wanted this baby and IF Ben winds up Special than it’s because GOD KNEW that he would be LOVED by u both NO MATTER wat and because HE has great plans for Ben whether anyone believes it or not! I’m happy that you and Amy did what you felt was right and I admire you both so much I can’t even explain, the thiings you both had and will endure makes you both much more stronger i don’t know how I would have dealt with what you guys are dealing but I must say just as Ben is a fighter and champ so are you and Amy! I’m so glad that you didn’t terminate the pregancy because we would never had him and he is BEAUTIFUL! nd the love I see from your pics with him makes ya beautiful as well! Please don’t let anyone’s words hurt u or Amy because Ben was meant to be your baby he was meant to be here! I can’t wait till he is healed 100% SO HE CAN BE HOME AND FEEL ALL THE LOVE 24/7 FROM YOU GUYS! I know ur love will help him overcome anything I just know it! I talked to Joe and I told him “Ben is here for a reason Ben may be unique but he has parents that will love him liek no one’s business! Ben is such a miracle and I’m so happy and appreciative that you made this site and share with us EVERYTHING good and bad that happens. A minor set back is ok as long as Ben is here that is all that matters! and ur right he is going to be great and he will prove everyone he is SPECIAL and UNIQUE and not cuz of how he is but because he is plain and simple! Ur son has proven doctors wrong so far who says he won’t continue surprising us! From the moment that you and Amy went through her cancer treatement and had her eggs (don’t know if I’m talking correctly) taken out for hopeful baby in future, I have been picturing my head how u guys baby would be and when news came out that u guys were expecting will I was as happy for ya as u wouldn’t know! I love ur baby cuz he is so cute, cuz he wants to live he fights while others just give up Ben is so strong that it’s crazy! He’s just precious, a beautiful miracle! Maybe I’mbabbling i don’t know but it’s just something I wanted u both to know. U guys especially Ben is ALWAYS on my mind and that cruel person will eat his’her words when Ben proves them wrong!

  3. Benjamin is lucky to be here yes…but he is also so very fortunate to have you and Amy as parents. He couldn’t ask for better, more loving, selfless parents.

  4. U know there’s ppl that have babies and just give them up for watever excuse! BUT ppl like u both that REALLY TRULY want a baby, there is dumb remarks like that post left by that person that make me MAD! It makes me angry that ya have so much LOVE to give and don’t care if he won’t be “perfect” but ya want and love him and so many kids being born today by unwanted parents….we live in a sad world

    • Thank you Sandy. Don’t be too mad- just be glad you have so much love to give and give those cute kids of yours an extra hug. 🙂

  5. Hi Guys,
    I’m Jess’s friend Carol. I’ve been following Ben’s story since she found out she was pregnant and I am still following making sure he is doing alright. I love seeing your little man overcome all the odds and prove to everyone that he is such a strong kid. I swear I was cheering when his weight was a major concern and just to see that he gained a few ounces I was like “YEAHH!!!!!”
    Obviously I’ve never met you guys, but from a 3rd party (if it matters) I believe you two are AMAZING (times infinity) parents and individuals. Everything you are doing for Ben is because you want what’s best for him and his life. I can only imagine how much your lives have changed because Ben was born so early, but you stuck by him like the amazing parents and people that you are. Not everyone is strong enough to stick by a child who may face disabilities his/her whole life, but the fact that you guys are doing everything in your power to make sure that Ben has even the CHANCE of a “normal” life is amazing and I envy you both and think so highly of both of you because you stick by him.
    I never really understood why Carol ever did the surrgo. thing. From the beginning, and still to this day, I ask her thousands of questions about it all, But until your story and seeing how much dedication she put into Ben and seeing how much dedication you guys put towards Carol really makes me see why surrogates are so important….which is for assisting amazing couples, like you, have the best gift in the world…you baby!
    I also know what Carol wouldn’t have been a surrogate for anyone but the best!
    Keep your heads up!
    Thank so much for reading this.

    Jess

    • Thank you so much Jess. Carol is a really special person- I don’t know if I could do what she did for us. Thank you so much for your beautiful thoughts and kind words.

  6. Hi,
    I’m Jennifer. My husband Brian & I met you at Women & Babies NICU. (We’re Lydia’s parents). I’ve been faithfully & quietly following Benjamin’s progress. Like Jess, I’m always amazed at your hope & humor. How sick for someone to make such a hurtful comment. Your response was beautiful. Your family continues to be in our prayers, & I know God placed Benjamin with the perfect parents for him.
    That boy is doing an awesome job with the weight gain! At 4 months old (on 5/27) Lydia was only 6lb 14oz. I am so anxious for you to get him home! It will happen. Please let it be sooner rather than later!

  7. Wow, you two are amazing! Nick and I have trouble holding back the tears when we read your updates. We just love hearing about your enduring strength and positive outlook. Benjamin is a gift and a precious one at that! Thank you for continuing to share your story with us. Blessings to you and your little warrior!
    Hugs
    Laurie, Nick, Mason, and Caden
    p.s. we have plenty of preemie and newborn clothes that we would love to send to you. We know you are busy with work and hospital visits but if you think of it just text your address to Nick and let us know what size he is wearing.

  8. As everyone has said… you 3 are amazing. Benjamin was meant to be in your lives and you were meant to be in his. He surprises you every step of the way and there is no doubt that we will continue to do so. I look at Lily every day and would never know there is ‘anything wrong’. She just tries our patience like every other 2 year old! Some of us may have more bumps in the road, but hopefully you will come to a place where you look back on all of this as a distant memory and be thankful for the RIGHT choice that you made.

  9. Guys-
    I am shocked and appalled that someone could or would write something hurtful on this blog, but i suppose the sad truth is that there are places and people in this world completely engulfed in ignorance and callousness. Conversely, I’m not surprised at the eloquence, grace, insight and wit you have shown in response. At times, reading this blog, I may have worried about Benjamin as he progresses, but i have NEVER, EVER worried about you both, as parents who will love him and fill his life with the very best possible. That was a given since the beginning.

    • Ethan – I look forward to the day when our conversations revert back to fart jokes and D&D references and stop being things that make me want to give you a big old man hug.

      • Yeah… i look forward to that as well, but i’ll never turn down a “big old man hug”…. I’m pro-hugs. All the way.
        (small question tho, was that big ol’ man hug; like it was massive and with force? or was it big, old-man hug, like we’re two old dudes hugging?) ….either way is fine.

  10. This person was downright cruel…..obviously they have no children or love in their lives and certainly no faith in God. They are more to be pitied since they are without the love of God in their hearts and all that He can do if only we ask.

  11. Benjamin will continue to amaze everyone and will continue to remind us all how precious life is.

  12. This PROVES (beyond a shadow of a doubt) that Ben is a ROCKSTAR! Rockstars have this problem with the general public all the time…rude people making obnoxious comments ! Madonna, J-Lo, Pitbull….they’ve all had to remove bad stuff from their blogs. & since Ben’s right up there with them, it was just a matter of time. But, Ben has no time for these types…he has many projects in the fire and an amazingly great pair of “Managers” who always promote him with his bestest interests in mind. And his fans….well….it’s ridiculous to even go there! His fans hang on every morsel of his career….they scream with joy at his photos and hang on every posting of his fight for the spotlight! A star was born when Ben entered this world, and its light continues to shine brighter & brighter. He’s got a huge Contract to fulfill and we all want a piece of him! Myself? I’ll take a signed 8×10 glossy and a few babysitting gigs, if I can get past his ‘people’!

    A fan!

  13. It’s so difficult to respond because I’m in tears and your friends have said it much better than I can. Even when we give birth to a “perfect” child, life makes unexpected turns and perhaps that child’s life doesn’t turn out the way we’d hoped. We still love them anyway – maybe even more so because of their problems – parents never give up on their kids – never!

  14. i sometimes cant believe how nasty and mean people can be!! that is just a horrible thing to say and could not be further than the truth!! as a parent you are always going to fight for your kid no matter what. you and amy are 2 of the best parents i have ever seen. i am so inspired by you and that sweet baby boy! ben is amazing!!!

  15. Have faith. I am not one who is religious, per se, but do believe that Kamisama (um, the Japanese word for God(s) ) has Kamisama’s own plan and way. Ben is a blessing. And he is a fighter. He has an adorable smile. And he has two awesome parents. While I was not particularly close to either of you in college, I have all the faith in the world in the choices you have made and the love you have given that wonderful boy. Keep going and do not doubt for a minute this is how it is to be. He has overcome so much. Even if there are disabilities, they do not mean a lesser life. There are those who are whole in body that receive less love than I know Ben will get, and are disabled, if you will, in spirit.

    You are all very much in my thoughts and prayers.

  16. Your essay was so beautiful it made me weep. I have already bestowed the title of “World’s Best Parents” upon you. Now I must add: World’s Most Loving Parents.

  17. Joe – you and Amy are heroes!!! I love you guys so much.

  18. Joe and Amy, people who write this crap have nothing in their life. They are ignorant, cruel, and selfish. They have no idea what it is to love especially love a child. No matter when and how a baby is born they all deserve the best chance at life and you have done that for Ben. He has proved over and over again that he is a fighter and meant to be on this earth with you guys. Look how far he has come and look at how many people love him. As I have said all along he will be ok no matter what challenges lie ahead. You are a FAMILY and families never let go good or bad. Love is the most important thing and Benjamin knows how much you love him and he shows you how much he loves you every day when he smiles at you and falls asleep in your arms. We are your family and we all love the three of you and keep you in our prayers always. God put Benjamin on this earth for a reason and whatever challenges may occur it is not for anyone to question. He was God’s child first and now yours forever. Love to you all.

  19. Joe and Amy, you are amazing, loving parents and you are so strong. Benjamin takes after you already. Chay’s got the right idea: heroes.

  20. Amy and Joe – as I sit here with tears streaming down my face, I want to find this person and just yell and make them somehow feel the hurt I’m sure you are feeling because of such thoughtless words. You *always* fight for your child. No matter what. Ben is so lucky and so blessed to have you for parents. You keep fighting. If in the end Ben has vision problems or can’t see at all, he will still know the love you have for him. What a special child God has given you. Chris and I will continue to keep you all in our prayers. Stay strong. Teach that beautiful boy how to fight and rise above challenges. All our love to you all.

  21. That must have been terrible to read such negativity. Amy, Joe, Carol and Ben are all in it for what truly matters, love. Let the love carry you through.

  22. Amy and Joe. I am so proud to be your parent and Benjamin’s grandma. Please don’t let some ignorant idiot who obviously has no goodness or love in their life make you feel sad. From the beginning of this journey, you both have thought only of Benjamin and what’s best for him. He is so lucky to have such smart, loving parents and you are so lucky to have your sweet baby. Everyone who knows and loves you will agree. The love you have for Benjamin and the love you have for each other is so bright. It will get you through anything. Don’t ever doubt the decisions you have made because they have all been the right ones. You are the most unselfish and loving people. The way you live your lives shows that. You three are an amazing family and Benjamin will live a wonderful life basking in your love. The people that count, your family and friends, can’t wait to see how wonderful a life it will continue to be. I love you all so very much. You are my heart.

  23. I just want to add that Carol is simply an amazing person. She did everything humanly possible so Benjamin could be born, even putting her own life on hold and at risk. I will thank this beautiful, completely unselfish woman forever. She, and her family and friends, are so much a part of our family now and will never get away from us!! Thank you from a very greatful mother and grandmother. We love you, Carol.

  24. A few weeks ago, I read one of Amy’s links about the rude comments people can make to parents of premies. I think whatever this person said to you guys certainly trumps any of those comments. You guys certainly made the right choices throughout this entire thing. Don’t ever doubt yourselves for a second. Hero doesn’t begin to describe what you two and Carol and Ben have been through and fought through already. If we all gave up when faced with a challenge, think of how much less of a world we’d live in today. Sending you love from Florida and congratulations for the six pound milestone. On a side note, the father’s day picture of Joe and Ben is precious and the shot of Amy and Ben cuddling is my favorite yet. The love you guys are sharing is so apparent in your posts and these photos, there is simply no way you guys could have or should have ever made any different choices. Keep your heads up and your hearts in it–we’re all fighting with you. And, thank you for sharing your little boy with us!

  25. It’s been my experience that every good parent questions the choices they’ve made for their children. You always want to do what’s best for them and since they still haven’t started handing out manuals at the OB office, we are all just doing our best to guess what’s right.

    Ben’s struggle is just going to make him tougher and when he rips off that CPAP, grabs a bottle and points to the door, he will be ready to handle what ever adventure comes next.

    You two and Carol gave him that chance, and you give him the strength derived from your determination and the inspiration from your love. I wish that you didn’t have to be in a situation where you need to be so strong, but I’m so glad Ben has you to learn from and to support him.

    You all make one hell of a team! I wouldn’t want to face you in a family vs family battle royal!

    All of the answers you need are iin that beautiful smile Ben has.

    Lots of prayers that Ben gets to go home soon(!!) and love.
    Tara

  26. Benjamin is a very lucky boy to have two wonderful devoted loving parents. He is a beautiful baby that is making a lot of progress. He feels your love and this will make him stronger everyday.

  27. Periodically, I check in to see how Ben and you all are doing. I woke up this morning and thought: it was time I checked in again. And today I feel luckier than ever. Luckier to know you and luckier to have heard this story — it helps me realize what matters most. And that is Love.
    Much love to you ALL! And thank you so much for sharing your story.
    Marissa

  28. Instead of cruelty, they should’ve offered compassion.

    Yes, Ben has a rough time ahead of him, but he also has strength, and hope, and two of the most loving and supportive parents a child could ask for. If anyone can beat the odds, it’s Benjamin, and I pray every day that he gets better and better.

    I’m sorry this person couldn’t see Hope still left in the box. *hugs*

  29. Thank you for sharing your story. I am currently 22 weeks pregnant after my water broke at 15 weeks. My husband and I felt and continue to feel all of the emotions that you described as we made our decision that we would not terminate and fight against all odds for our little guy. Thank you for giving us hope and we will keep Benjamin and your family in our prayers.

    • Thank you so much Krissy. We’re thinking of you and your family as well. We know all too well how scary this part is. I hope your body holds out as long as possible and your little guy is born healthy and thrives. You’ve made it so far, and I wish you many more weeks of pregnancy!

    • Krissy – you’ve already made it so far! We know your little guy can wait some more. Lots of prayers heading your way

  30. I have just been directed to your blog by Carol from a facebook support group for pprom ladies. My waters broke at 15 weeks and I managed to hold on until 29w5d. We were faced with the same decision as to whether to continue the pregnancy and have been told (by family) that we were so desperate to have a child we would do anything even if it meant having a child with severe disabilities. Our little boy is 8 months old (actual), healthy and happy. I have no regrets. In fact, I don’t know whether I could have lived with the thought of “what if”. My motto through the pregnancy was “Where there is life, there is hope”. Never give your decision a second thought. What you made was a decision you made given all the evidence presented to you and your own gut instinct. Good luck with your continuing journey.

  31. Freedom of speech is essential to the fabric of society. Everyone has the right to express their opinion, in the same way that everyone else has the right to embrace or reject an opinion. The person that made the post that you are not doing the right thing fighting for Benjamin enabled two things: an opportunity for everyone to offer enormous, unconditional support love and support to Joe and Amy; the opportunity for Joe and Amy to express that they are extremely human and wrestle with the enormity of what they are going through with Benjamin on a daily basis. It probably would not have been easy for either side to frame this without the posted comment so we should thank someone for posting it and not keeping it to themselves.

    In my opinion and – probably more importantly – my experience, they are wrong and ignorant (please take this in the context of lacking information not as an insult). Continuing in this spirit, I would like to offer some further context to rebuff their comment:

    There are many examples but I will offer two, one very public, one personal:

    Stephen Hawkin – the poor man in that horrible wheel chair, surely he has suffered enough, let’s put him out of his misery, surely he has nothing to offer to society.

    Anthony Katz – Anthony is the young man that stared in our Playing (our) Favorites charity event. Anthony was born with a severe form of muscular dystrophy, was given the last rights on the day he was born and was not expected to live beyond his first birthday. For anyone that knows the Katz family, the don’t know two people with three kids and a wheel chair, they know an extremely tight knit, loving family with four boys, an open door and even more open hearts. Anyone that has been touched by Anthony and the Katz family could not have written that comment as to deny the world of Anthony would be a crime and a sin. He is not a saint, in fact he is a cheeky little bugger, but he is an amazing young man and an inspiration to many.

    Personally, I think Benjamin is going to cure cancer or invent a new form of toothpaste or something else miraculous. I may well be wrong but I am a parent and every parent dreams of what their children could achieve; you eventually get over it and settle for not shooting off the church roof. I do know that Benjamin deserves the right to be all that he can be and that he could not be in a better place than with his parents and surrounded my so much love and hope.

    You don’t have to agree with me, you don’t have to care but if you make provocative statements, I think it is reasonable for someone to be able to make a reasoned response.

    • Greg – love to see you rocking out there! We need to get to your next event. I also need to ask Ben to start working on toothpaste that doesn’t make orange juice taste weird.

  32. Hi, my daughter is a 3 month old 24 weeker. It is terrifying all the things the doctors tell you when it’s obvious your baby will be born early. These beautiful babies are worth every bit of the worry, finances and time it takes to stand by their bedside every chance we get. I can’t imagine my life now without my little girl. I’m sure you feel the same way about Ben. To think someone would suggest anything different is just incredibly sad. I’ll be praying for little Ben and for you guys.

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