Sunday, March 11, 2012

A response to our first (and hopefully last) negative comment.

I (Jon) have a few things to say about this comment posted by an "Anonymous" person.

"I realize that she could get really sick if she caught a cold but don't you think that you are going overboard a bit. Are you going to always keep her in a bubble. How will she be able to have friends if you are that paranoid? She will have no immune system because you have kept her sheltered."

  I'm not sure who you are, because you chose to be anonymous, but this Blog was designed to update and encourage those who chose to follow Ella's journey, and is not the place to be posting inappropriate opinions publicly. But I will use this opportunity you've created for me, the Dad, to address some of the questions and thoughts that you, and maybe a few others, may have. First, I don't think you really "realize that she could get really sick if she caught a cold" or you wouldn't have finished your post. I also believe that if you were truly thinking of Ella's well being, and having the information we've been given, you too would be willing to make the sacrifices and hard decisions as we have. No, Lord willing we will not keep Ella in a bubble forever. Our Doctors say that a child under the age of two can be sheltered from germs with little to no weakening to their immune system. Ella still has at least one more open heart surgery to go, it is crucial for her to stay well. So as hard as it my be on Amy and I, Ella is more than enough reason for us to make the hard choices and forgo some things like church, family gatherings, friends, holiday celebrations,...etc. Also, I think we all know that Ella, 19 months old, still has time, God willing, to not only make new friends but meet the hundreds, even thousands, of people who have supported us and shown us love. I know, they would be honored to be called her friends. I realize that choosing "Anonymous" may have been an accident, that being said this comment was still unappreciated. It's never a good idea to post something that you don't have the confidence enough to put your own name behind. We are fine with people asking questions and even having doubts about the way we do things. We are happy to help educate others about heart defects and our lifestyle, but out right accusing us for the decisions that we have made for OUR special needs child that you clearly don't know about, is hurtful. Please remember that every decision we make is made with the best knowledge we have. We pray and ask her doctors before we go forward, and we know our daughter better then anyone else possibly could. 

A BIG THANK YOU to all those faithful friends out there who continue to lift our little family up in prayer, love, and support. It's awesome to experience God answering your prayers. Doctors tell us they've never seen a baby with her conditions do so well. Ella is a miracle, and that's all there is to it.

Please continue to remember Ella's little heart friends( Emma, Lyric, Annabelle, Scarlet, Evan, Bethany... etc.) 

Thanks, and God bless!!! Ella's Daddy


  1. Very well said. {{{HUG}}} It's hard being a heart parent and making the decisions that we have to for the well being of our child. Harsh judgement from those who have not walked in our shoes is uncalled for.

  2. I too have had some very ugly, ignorant and inappropriate comments from Anonymous. Sad. I always say " hurt people hurt people.". I will continue to pray for your previous Ella.

  3. Nicely put, Ella's Daddy. I've never posted here, but have followed Ella's journey through birth. (I went to church with Scott Werner when I was a kid and came across your blog after Greg had his car accident.) I know it is difficult making the right decision for your child. I have a daughter with autism. People are always questioning us (even total strangers)about how we handle her behaviors. I pray this is the only negative comment you have todeal with. However, with the sinful world we live in, where everyone KNOWS what is best for everyone else, it probably will not be. Hang in there. Listen to your doctors and allow the Holy Spirit to guide you to the best decision you can make at the time for your beautiful miracle. Remember, you have many silent prayer warriors on your side!

  4. Nicely said. I'm amazed that someone would have a hard time understanding why you have to protect her from illness. I'm hoping it's just that they haven't had the time to learn more about heart conditions.

  5. Many people don't understand completely the affects a 'simple cold' could have on a child with other medical issues. They have never experienced the intense worry, the intense grief and the intense satisfation of having a special needs child. I am a grandmother now, but when my daughter was born, 30+ years ago, she was 'special needs'. She was a preemie, who weighed 2 lbs at birth and came home at 3.5 lbs. With the grace of God, she grew up healthy and highly intelligent, but initially, those first few years, were fraught with worry about many things that I know you have gone through. You will get through them with your beautiful daughter and the grace of God. Keep doing what you are doing for her. Extend grace to people who don't understand and pray for them, that they never have to go through what you and your family have gone through. And mostly, love that little girl of yours and give her a hug from us 'strangers' that check on her often and love her like our own!!

  6. Very good response(Daddy)! When I read it my blood kinda boiled someone would post such a comment to you guys!
    Keep strong as a family. Never stop remembering the hundreds that still pray and think about you all all the time!!! HUGS!!!!!

  7. Hope that doesn't discourage yall from updating about sweet Ella. It is a joy to watch her grow and cheer her on from the sidelines. You are both doing a great job!! Loved the beach pics. Prayers always.*Amber

  8. i continue to watch ella grow up into this beautiful strong girl and it melts my heart everytime i see her little smile. i hope negative comments stop you from posting. Im a friend of the stewarts (emma's family) and i hope and pray ella continues to get better.

    1. *dont stop you from posting

  9. Hi, my name is Mandy. I'm posting as anonymous becuase I have yet to figure out how to get my name to appear! I can assure you I am not the "Anon" that posted earlier. My twins were born at 32 weeks and spent 4 weeks in the NICU. We were warned about the implications if either of them would get sick in the first year and the trouble they would have recovering from it. My husband and I got a lot of crap from our families. The twins were perfectly healthy and they assumed we were over reacting. We got guilt trips for missing neices' bday parties, family reunions and holidays, but it kept our babies healthy so they could continue to grow and catch up. We really got confident after they turned 2 and thought any side effects from prematurity wouldn't be a problem. Then my daughter, Emma, caught RSV and mycoplasmic pneumonia. She spent 6 days in the hospital on supplemental oxygen. Her lungs are still not strong enough to combat anything serious. You continue to do whatever you need to do to keep your sweet baby healthy! Don't let the opinions of people who obviously have never had a seriously ill child get to you. I love seeing the updates about Ella and how far she has come. My family prays for her often! Best of luck in the future :)

  10. Jon and Amy,
    You are absolutely right to take care of Ella as you see fit. You don't need to apologize in any way: God committed this special little girl to you to bring up to the best of your ability, and you both are doing just that! And look at Ella and how she is blossoming, learning, and smiling! Did you know that my own pediatrician didn't want even healthy babies in groups/crowds for a year; he told me there are cultures where the baby is kept at home until age three! Obviously, those babies grow up and thrive! I'm with both of you; keep Ella safe and well in the ways that seem best to you! God bless! Ella, Emma's "online playmate," is always in my prayers; hopefully, it won't be long til they can "talk" on Skype or on the phone.
    <3 from Emma's Nana Jana
    PS: Because of health issues and immunity problems, my husband has been told to avoid crowds (as has my daughter who has cancer). If it's any consolation, we catch similar "flack" from people who do NOT understand! We take comfort in knowing that God understands!

  11. I am so sorry that people do not understand the extreme measures you have gone thru to keep Ella as safe as you can. Whenever I see either of you out and about I try very hard to keep my distance. No one would ever intentionally cause Ella to be sick, but I remember how critical it was when she got the stuffy nose. You are both doing an amazing job and Ella is a very warm, bright, smiling child. She will no doubt thank you some day for the sacrifices you have made in her behalf. Keep the posts coming. I love to see how God is working in your lives. Your little miracle is blessing us all.

  12. Praying for you guys and your sweet, beautiful blessing!!

  13. Jon and Amy, I am sorry someone would post such a hurtful statement, but I think that the individual is ignorant of what you two are so careful to learn. You two are amazing and I have watched you grow through this experience with Ella...don't let someone's foolish ignorance keep you from doing what you feel in your hearts is the right choice. Ella is blessed with two wonderful, loving, selfless parents!!

  14. We have received similar comments from friends and family that should know better, but choose not to fully understand how critical it would be if Hope got really sick. It makes me really mad when family comes by and they know they have been sick or around someone sick and don't say anything until after Hope gets sick. Then I get...oh, I'm and so had the stomach flu. Its not like people don't know that Hope has serious issues with gaining weight and the stomach flu sets her weight gain efforts back a month! UGHHHH...sometimes people just don't get it...although I am glad it is not anonymous telling me that it is no big deal.

  15. You must do what you feel is right for Ella. Only YOU have handed her over for OHS only you care for her 24/7 and as you said you know her best and are always acting in her best interest. I got the same kind of comments from our family because John (also HLHS) seems healthy and happy yet I know in my heart he is that way because I go through my best efforts to protect him and am willing to sacrafice anything I want to do with what I have to do to protect him. I also agree with you this or any heart blog is not the place for negative comments. Don't let it discourage you.

  16. I just want to say that I am very proud of how you have protected and cared for Ella during her whole life (from conception until now). She is truely God's blessing. No one should ever pass a judgment on you for raising and protecting your child. God placed Ella in your life and asked that you nurture her and protect her just as He protects us. I wonder sometimes how these "anonymous" people would feel if God withdrew His protective sheild from their lives. You are doing nothing more than standing in the gap for your child. You should be nothing but commended for your love and protection. I have followed your blog since Ella's birth. I am proud of you and pray for you all every day. And I'm fairly certain that Anonymous didn't even consider the sacrafices that you all make on a daily basis. To cut yourselves off from all your family and friends is a huge sacrafice. But as parents you are willing to make any sacrafice to keep your child healthy and happy. From every picture I've ever seen, Ella is extremely loved and nurtured. The doctors are amazed because you and God are amazing. Keep doing what you are doing and all those "anonymous" people out there can just mind their own business and take care of their own.
    -Susan Wallace (friend to Amy's grandma Pat)

  17. Jon,

    Well said. I was reminded of the verse in 2 Timothy 2:24-26

    The Lord’s bond-servant must not be quarrelsome, but be kind to all, able to teach, patient when wronged, 25 with gentleness correcting those who are in opposition, if perhaps God may grant them repentance leading to the knowledge of the truth, 26 and they may come to their senses and escape from the snare of the devil, having been held captive by him to do his will.

    Your words were direct, and seasoned with grace.


    Cindy Cole

  18. Well, momma and daddy, isn't it unbelievable how rude and crude people are. I am anonymous, but not "that one". I loved how you took up for your little family by writing such a needed note to "that one." Hang in there, and I think I mentioned long time ago in one of my posts, we have an adopted son, and my goodness, we did nothing right according to another "that one." Whoever that was, had better get down on their knees and get busy, cause they are not right with God. Now, do what you think (know) is best for that precious gift that was given you by God Almighty. ELLA IS DEPENDING ON YOU!! Have a wonderful summer with that precious baby. Boy, you sure got a response from a lot of readers on this issue. They "came out of the woodwork" so to speak. LOL Just shows you how many people are following and loving every minute of every post. Please keep us updated.



  21. Jon, you mentioned in your response to "negative anon" that your blog was designed to keep everyone updated. We want you to keep it up for us, please. Don't let the negative comments keep you from the rest of us. We love and look forward to reading every blog from you. The negative responses from others will totally TOTALLY be ignored by the rest of us. We all understand there are all kinds of people that make this world interesting. PRAYERS are still needed for Ella from all of us. Thank you for your updates even to those of us you don't even know or ever will meet. We have to be updated to know what is happening and what to pray for. THANKS TO YOU AND YOUR PRECIOUS WIFE.

  22. Few people in this world would be able to comprehend what you have been through as a family and what measures are necessary to keep Ella as healthy as possible.
    Unfortunately, many people do not have knowledge enough to be voicing an opinion, but they do anyway. I pray that God will guard both of your hearts from the disappointment/frustration that others can cause.
    What a beautiful story you and Ella have of faith, and healing! Thank you for sharing and keep it up. Ella couldn't have it better than the two of you :)

  23. Ahhhh...

    Let me first say that I agree, mean or "know-it-all" comments are hard to take sometimes!

    I think as parents, we ALL have to make the best decisions for OUR kids. Those decisions are going to vary vastly.

    In ten years, we'll look back, and we'll all say, "wow, I wish I wouldn't/would've done that" but right now, we pray, and make the best choice in the moment.

    When it comes to parenting, of heart babies or healthy ones, a right or wrong doesn't exist.

    For our family, we chose NOT to shelter Annabelle, even though she was, in fact, more susceptible that most heart babies since she was transplant and had a medically suppressed immune system. Now, we wash hands, try to clean everything, and do the best we can, but when the doctors gave her okay, we took her to church. We let her crawl on the floors. She put EVERYTHING in her mouth when teething.

    But I did this knowing that we have 3 other kids, and keeping her "away" from outside germs was not an option for us. Our other kids had already suffered greatly for a year while she was in the hospital, and if we secluded Annabelle, we would be doing the same to them, and it just wasn't fair. We weighted the risk, and felt like Annabelle was well enough to weather it as long as we took precautions.

    Now, she got RSV last month... spent 12 days in the hospital... so now we ARE on "home only" for the next few weeks until the worst of cold/flu season is GONE... but I don't regret it.

    That said, had she been an only child, I probably would have made completely different choices.

    But that's the thing. they are OUR choices to make, no one elses. And judging others (especially publicly) isn't super great. Granted, that person is totally allowed their opinion, just was a bit of bad form to express it to you in the manner they did.

    I'm sure their intention was one of trying to "help" but you know what road is made up of best intentions:-)

    Love to you both, and to precious baby Ella! She has such a WONDERFUL Mommy and Daddy who love her SO incredibly much... you all are doing AWESOME! (sorry for the long comment... ha!)

  24. Ella deserves to be sheltered right now. She will have plenty of time in the future to be introduced to the "germ world."

  25. I am a lady who just found out about your little Ella today and looked up your blog. Wow, what a journey. I spent a few hours reading all past blogs about Ella and I cannot imagine what all you have been through. It is sad that at the end of all the blogs, we read this negative comment. So, lets all move on, enjoy the precious pictures and updates. I will be a faithful follower from now on, because I want to know how this little Ella's summer is going to go. How about a little advice...........SHELTER THAT SWEET BABY AS MUCH AS YOU CAN, WHILE YOU CAN!!!!!!!!!!!!!!!!Prayers to you all.

  26. I'm sorry that someone had to post an insensitive comment. It's never easy, but many people just don't understand. My son has had multiple severe food and drug allergies since he was just 6 months old. We've had to completely eliminate foods with those ingredients, completely shun most restaurants, and repeatedly ask family not to come near him if they've eaten those foods. They have given us much grief about it, saying he needs to "build up an immunity by eating those foods to outgrow it," and some flat out refuse to acknowledge it. But for his safety and health, it is absolutely necessary, and as his parent, it's our job to keep him safe. He's in school now, and we can't be there to protect him every second of the day, but we trust his school, and we have the peace knowing that we have and do do everything possible for his health. Right now, keep up the good work! Some day Ella will be in school and you won't be there to protect her from everything. Keep that baby well! I'm also glad to hear that she's doing so well!!!


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