Thank you

Just last night, after Avery’s bath, when he was walking around in his underpants and refusing to put on his pajamas (it’s a stage, very defiant, can you believe it was annoying to me just last week?) Tom said, “It’s really going to break my heart, seeing the scar.”

Then I told him about all the emails, and the love and support on the blog, and I sat him down in front of it and made him read. He had tears in his eyes by the end, but he said, “I feel better.”

The writer Anne Lamott says in one of her books (I forget which one, they’re all terrific) that there are really only two prayers, “please” and “thank you.”

So I’ve been saying the “thank you” prayer over and over, because I’m feeling so grateful for your love and support.  (Of course I’ve been saying the “please” prayer all along too, as in “please let Avery be okay.”)

And I’ve learned so much from all of you!  If you want to find out more about Congenital Heart Defects, this is an excellent site. 

If you’re curious why we weren’t worried about the heart murmur, this explains it (it’s truly called an “innocent” heart murmur, who says scientists can’t be poets?  Only in our case, I’d edit that, rename it to “ominous” heart murmur.  But that’s just me.)

And here’s another site that explains the heart in terms of a house, which I love, because even I can understand it.

Okay!  Back to my please-es and thank yous.

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63 thoughts on “Thank you

  1. I am thinking of you all…glad to hear Avery’s surgery went well. My prayers continue for a speedy recovery. With regards to the scar, it will be almost un-noticable in 6 months (Matthew’s barely shows)!

    Hugs to you all…

  2. Avery, I’m praying for you every single day, sending you LOTS OF LOVE and HEALING ENERGY your way ~

    Thank you so much for the update. I’m so happy to hear the GREAT NEWS!!!. 😀

  3. My dearest Jennifer and Sir Avery………you both have been close to my heart today [and everyday] but especially today. Please know that I have been saying the ‘Please’ and ‘Thank you’ prayers with you.

    I hope you felt my love surrounding you today…….

  4. I just wanted to let you and your family know that we are thinking of you today. We know it is such a bitter sweet thing to be having this surgery — so hard but so worth it. I am sure you have seen SO MANY surgery experiences, but feel free to check ours out on our blog — derekandkenzee.blogspot.com — Best wishes to you and yours

  5. Hello everyone,

    This is Jennifer’s faraway friend Rebecca. I just had the pleasure of talking with Jennifer in Seattle. Avery’s surgery was a success. Jennifer was very calm and collected, and wants everyone to know that even in her most nervous of moments she felt lifted by our love and prayers. She mentioned twice that the surgeon was happy guy, so happy that she felt assured that things went well. She is waiting to see Avery who is in the ICU right now, and plans to kiss every inch of his body that isn’t covered in tape, lines, and wiring.

    In the best case scenario they will be headed back home in about four days, provided that the baby steps to wean him off everything goes as planned. If Avery needs more time the stay could be extended. Jennifer will be calling with a report tomorrow after the doctors have made their rounds. Please keep them in your thoughts and prayers in the coming days as Avery recovers from surgery.

    I am planning to send a little love to Avery’s room tomorrow.

    If you are interested in contributing please email me directly at: rebecca-creates@q.com

    (I tried to post this as a blog post, but unfortunately something in the set up of adding me as a contributor didn’t work out, so my post is sitting as pending. I am hoping to get it resolved tomorrow)

  6. Any news yet?
    Still keeping Avery in my heart today!
    Praying for you all in Dublin, Ireland.
    love LinMac from Downsyn

  7. Oodles and oodles of prayers for all of you today. The Lord has brought little Avery to my mind so many times today. I can’t wait to hear the stories of how you are amazed by Avery’s courage and strength as he recovers.
    In God’s sustaining love,
    Laurie

  8. thinking of you and your beautiful boy today, surgery day. sending our love our hugs our kisses our prayers our sweet and tender mercies. xxxxxx

  9. I am usually just a silent reader of your blog, not a commenter but I wanted to say I am thinking of you and Avery and your whole family today. Really hoping surgery and recovery all goes smoothly and as quickly as possible. Sending some good thoughts for your other two boys as well. Best of wishes.

  10. As usual, you say everything so eloquently.
    My thoughts and prayers are with you. Avery is a strong, wonderful boy–I love the description of him hugging the technician drawing blood–so true. I’m sure he will make many people at the hospital in Seatlle smile as well.
    Thinking of you all and will be anxiously awaiting updates.
    Maya

  11. Praying for you all today!

    Concerning the scar: We noticed after we were home and recovering that Mylie’s scars from the incision and the drainage tube looked just like an exclamation point. (In our homeschool, we call those “excited marks” because it is easier for the kids to say.) So right away we started calling it her “excited mark” and using it as a reminder of how well she was doing. 🙂 We even posted pictures of it on her website to show how excited she was that she was feeling better! It still brings us smiles. 🙂

  12. In re-living our experience while thinking about you coming up to this I forgot that you had posted about “please” and “thank you” prayers. This made me feel better to read, and I’m just stressed out for you. I hope your own words can give you some comfort too.

  13. please and thank you. that’s great.

    thinking of you all tomorrow. And tonight, too — I hope you get some sleep. The night before is hard in its own way.

  14. Hi Jennifer
    We emailed back and forth a long time ago. I also have twins (one with Down Syndrome). My son had an AV Canal repair. He was barely 7 months at the time. I remember being SOO scared and feeling so helpless because there was nothing I could do. I just wanted to keep him with me and not give him to the nurse. I was pretty composed during the surgery (although my husband was not) However, when I saw Kyler afterwards I fell apart. All the tubes and how swollen he was and everything. It was horrible but now it seems like it never happened. Kyler is doing fabulous and he does have a scar but it just shows how brave and strong he is. He is my miracle. I want you to know that it’s okay to fall apart and have hard moments. I called my parents from the hospital numerous times just sobbing but I made it and so can you and so can your little Avery. We will be praying for Avery and your family. Good luck!
    Krista Gage

  15. Hi Jennifer
    It is Mar 10 down under so I just wanted to write you a note to let you know that I am thinking of you all and saying please’ prayers for Avery as his surgery is so close now. I know he will be fine but there is no way around the fact that handing over our precious children to OHS is terrifying. Lots of hugs being telepathically sent across the oceans!

  16. Hi Jennifer, I just recently read your book Roadmap to Holland and wanted to thank you for it…and now I feel I can add a little something tot he journey you are on! My son, Patrick, had OHS at nine weeks old so much will be different about your experience. But one thing might help. We used music a lot as he was recovering in the hospital. We, of course, used the songs that comforted us and really had very little meaning for Patrick since he was so little; but for Avery, you could use music to ease some of the strangeness of the hospital. The beeps and whines of machines seem to melt away with good music and the room can actually feel comforting and healing.

    Your description of Avery as the kind of guy who hugs the person doing the blood draw is spot on for Patrick and so I feel an intuitive understanding for your grief and sadness. Avery, amazingly, will guide you through this as he has done on so many other occasions. You will make it through and that scar will be but one more story to tell of hope and inspiration.

    Hang in there…all best wishes and prayers, Beth
    PS. We have all sorts of blessings written under our paint too…that’s why I smiled as I read your book– you’re a kindred spirit!

  17. I’m in Seattle now, and it has been sunny and lovely. I’ve thought of Avery as we walked about town, and wrote a little prayer for him on a slip of paper and left it on the rooftop deck of our hotel that overlooks Elliot Bay. I’m hoping the words will make their way to Seattle Children’s, and that all is well later this week. xxoo

  18. I posted about my daughters ASD repair when she was 4 if you want to read it. We call her scar her love bump and made sure to give it lots of kisses! I adapted more quickly then my H. who still grieves a bit about the scar. But everyone is right- they see it differently and other kids are very impressed and think it’s cool.

  19. I’m sure the scar will seem prominent at first but, yes, it will heal.
    You just reminded me, I have not read Annie Lamott in years, and she is so cathartic to read. I could use some of her in my life, thanks for mentioning her.

  20. Everybody is right, the scar heals in no time at all. Devon’s scar runs from the midline of his back along his scapula and to his side, he was so young and it was his aorta that was a mess so the surgeons went through his back ribs for their business. But when I see him without a shirt the line is a reminder of life and the gift he is in our lives.

    Annie Lamott is spot on, there is really nothing else to say but please and thank you. They are the best words of all.

    Thinking about you all.

  21. I really appreciate the simplicity and directness of the Please and Thank You prayers. Thank you for sharing that and Please keep doing more of the same. Your family is in my thoughts – and prayers. Every night, my 6 year old son, Gabe, insists that we pray and I pray that he will not be visited my scary thoughts that night, for the rest of the family and for a great surgery for Avery. I know that he is blessed and I hope that everything goes well.

  22. Very well put, Betsy. That is so true that by this time next week he will already be healing. I was so surprised at how quickly Benjamin recovered from both of his surgeries. Kids are so resilient!

  23. Scars heal and fade in time…I think the Big Guy Above leaves just a hint of them behind to remind us to always be grateful, to be thankful for the precious gifts He trusts us with…

    It probably sounds crazy, but its really incredibly empowering to see your child through surgery – most people know they would do anything in the world for their child, but few of us have to prove it, you know?

    On Paige’s incubator, long before I knew we would see upwards of 20 surgeries in her life, I left this note, “My heart, my soul, my life…my darling Paige, together we have no limits…”

    Little did I know how much strength I would draw from this little girl of mine, with too many scars, yet breathtaking blue eyes with brushfield spots sprinkling starlight into them – she truly makes me feel limitless.

    Just know that as of next week, he will be getting BETTER – his superhero powers will return, stronger then ever before.

    (((hugs)))

    Betsy

  24. Our 23 month old son, Will, has Down Syndrome and a complex chd. He has had 3 open heart surgeries….I know exactly what you mean by “please and thank you” prayers…I thanked God before his surgeries for helping me have enough faith to send him in to the OR…KNOWING God will see him thru…other days, I was gripped with fear…and the PLEEAASEE prayers would pop up…both are good, God doesnt expect perfection in faith! (remember Peter started to sink…even though he could reach out and touch the hand of Jesus!)
    Just remember Faith isnt just believing God can do it, but that HE WILL!
    And you will come to love those scars, they will remind you how strong Avery is, and what God has seen him through. We are proud of Will’s scars! Many prayers for Avery and all of you, Kim

  25. They always say scars on men are sexy, right? Wasn’t that a scene in Lethal Weapon with Mel Gibson! Just think, he’ll be proud of his scar one day when he’s grown and showing off to the ladies :)!!!!

  26. I did the exact same thing with Benjamin before his surgery! Took lots of “pre-scar” pictures, thinking that I’d be sad to look at them later. But to tell the truth, they really don’t. (Not that it’s not perfectly fine for that to make someone else sad!!) And my husband has said the same thing about Benjamin and the swimming pool. With his heart scar, the two chest tube scars (from his heart surgery), and his stomach surgery from his intestinal surgery in January, he has quite a collection!! And we’re so glad b/c while both surgeries saved his life, his intestinal surgery in particular transformed him into a totally different baby who can now eat and sit up! YAY!

  27. I felt the same way about Matthew before his surgery – took dozens of nakey pictures, thinking “this will be the last time he doesn’t have a scar.” But, I was truly AMAZED by how quickly he healed, how fast the scar turned into just a white line – a reminder of the medical miracle that saved his life. Sometimes I think God allows scars so that we don’t forget. My dear husband just says, “He’s going to be the coolest kid at the swimming pool!” We’re still sending lots of prayers your way. Thanks for keeping us updated.

  28. Jennifer – you and your family have been in my prayers since you shared the news of Avery’s surgery. My you all be wrapped in the arms of dear family and friends through a constant chant of please and thank you. Thank you for sharing, for your honestly and transparency.

    Hugs,

    Libby

  29. I just found out about this. I follow far too many blogs. 🙂

    I remember waaaay back before I knew anything about hearts (I feel like an expert now), the pediatrician casually said, “Well, Benjamin’s not in heart failure…” I kind of gasped and thought, “Oh, I *hope* not!” That was back before I understood that heart failure doesn’t mean your heart is going to stop right now; you don’t have to drive 90 mph to the ER. It simply means that the heart cannot keep up with its demands.

    I think the dynamics of heart surgery with an older boy such as Avery will be different than with Benjamin, who was only 5 1/2 months old. We didn’t have to explain anything to him or try to make him unafraid. But you are a wonderful mother, and Avery knows you make him safe. While OHS is a big deal to us mothers, the surgeon, doctors, and nurses do these surgeries all the time. I remember being a little nervous before my wedding. Then it hit me…people get married all the time. I will be fine. And that is the similar attitude I forced myself to have over B’s OHS. Five months later, he is thriving. He had his last dose of heart medicine yesterday (that he’s been on since he was days old) and we don’t have to go back to see the cardiologist for six months! The scar is mainly faded and is just a part of him, much like my C-section scar is for me. Just a necessary evil to get things done. Not to belittle your concerns or worries. But just as you promised me and many other new moms to DS that one day we would be okay with the diagnosis, I promise you, heart surgery is just one small bump in the road, and one day you will be fine with it. 🙂

  30. Just like Down syndrome, after a bit, you won’t even see the scar…you will only see Avery! I am holding you close in my thoughts!

  31. I just echo what others say about the scar. When the surgery is but a distant memory, you will see it on Avery’s chest and it will be testament–not only of his strength, but of yours.

  32. i just thought about Avery the other day and wondered how you are doing in preperation for this in our mind as a mother. Maysons upcoming eye surgery tugs on me everyday…. hugs to you!

  33. I second Niksmom: the scars are a sign of a warrior. Avery is one, and so is his mother. You will rub that scar and know your son as a fighter. I am thinking of you.

  34. Surprisingly the scar will hardly be noticable. It gets very faint over time and if it is noticed it’s only a gentle reminder of what everyone has been through: but more importantly how much better off everyone is because of it. Tell your husband it won’t bother him as much as he thinks. Just a thin line of courage for Avery! My thoughts and prayers are with you and your family. Love, Archie’s NaNa

  35. Sending up pryares of Please and Thanks from here, too. FWIW, for the longest time, my own father could only connect with Nik b/c of the shared scars they have from heart surgery. It was all he could grasp in the beginning. Now, the scar is just a part of the landscape of Nik’s little form and the connection they share goes straight to the heart. When I look at Nik’s scars (and there are many, many surgical scars on his body), I no longer see the heartache; I see the reminders of what a strong fighter he is.

    So is Avery. xo

  36. I love that passage from Anne Lamott. I remember it.

    Yes, we will all continue with our please and thank you prayers on your behalf.

    Thank you’s for Avery, for you, for Tom, for your other two sweet little boys. Thank you’s for such a family. Thank you’s for your beautiful words, which are inspiring to all who read them.

    And, of course, please, please, please. Let it all be okay.

    We are still praying.

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