Wednesday, January 6, 2010

They gave us a print out of Boston's Chromosomes yesterday - you can see the extra one on number 21 - Down Syndrome is known as Trisomy 21.Yesterday's appointment with the Genetics doctor was not so great for me. It started with her letting me know that Down Syndrome is because MY body released a bad egg - nothing like starting out a meeting placing blame to make a mom feel horrible. I know she was not doing that - she was only explaining the science of it all but it still was frustrating! She then went on for over an hour telling us about all the "possible" horrible things that "might" happen throughout Boston's life with Down Syndrome. I really did not need that, not now. I realized yesterday that I have not really allowed the idea that Boston has Down Syndrome to really sink in. I have been focused on his heart, his lungs, his reflux, the monitors, the oxygen and all the other "preemie" stuff. The truth is he does have Down Syndrome. It does not mean I love him any less...maybe more even. It does however hurt. Two kids, both with special needs. It is a lot to emotionally (and physically) handle some days.
Anyway....she was pretty fascinated that our family had both Rett Syndrome and Down Syndrome (and also that Charlie had Bechet Syndrome) we answered lots of questions and basically at the end of the day all three syndromes are most likely not related. She truly feels they are all "sporadic genetic flukes."
One thing I already hate is the "you poor thing" look that I got from her. I guess I should get used to receiving that look from people but I hate it. I do not want pity. My kids are awesome......will my life be more challenging that the average mom raising two kids? YES! But pity, I surely do not need!
Thank you all for your continued prayers for me and for my family.....keep them coming!!!


  1. I know everyone is going to write this, but you really are amazing. I hope you never feel the pity look coming from anyone at our house, because all I feel is admiration. You and Charlie really are great parents. Boston and Brooklyn are amazing and SO lucky to have both of you.

  2. I feel that look at times too and I hate it. But I just try to remember that people dont know what to do or say when faced with parents who have kids with special needs, and that pity look is like default mode or something! :) I too am amazed by you and your adorable family. xxo

  3. Kelly, I want you to know Mike and I are always here for you, Brooklyn and Boston. I've seen that pity look with Avery and sometimes Cole and I decided that it would never bother me. People don't know what to say or how to look but I'd rather see pity than someone laughing at my babies. Most people are compassionate, but you know it is hard to find the right words always.
    Both your kids are beautiful and will be whatever God intends for their lives with your help and love. I can't wait to see what hey can accomplish. Love you

  4. You're whole family is AWESOME!! Love, Mimi

  5. You know, before I had my son with Down syndrome, I probably gave people who had a child with Ds a 'oh, poor people!" look, too...but not anymore;-) Now I know first hand the joys of parenting my son, and now it's more of a 'hey, aren't our kids great!?" kind of look;-)
    My son Danny is 11 was a shock at first when I found out that he had Ds, but I can honestly say that my life (or his) is nothing like I was afraid it would be. Danny is funny, smart, cute, social, active, and constantly learning (and teaching) new things.
    Children are amazing, period. But... Boston and Brooklyn will bring a richness to your life that you never could have imagined

  6. Kelly:
    You are such an amazing person. I know we don't know each other all that well, but you inspire me everyday that I read your blog. God never gives us more than what we can handle. I am sure some days are harder than others, but you are an amazing mother and wife. Hang in there. Everything always works out!! In college I nannied for a family that had a little boy with Down's. He was the best little guy in the world. He was so loving and nothing but smiles. I can only hope that Boston shares those traits.

  7. That does suck, focusing on all the negative, how about all the positives instead. Boston will have wonderful qualities and he will live a happy childhood in the Butler home.

    I second Kathy's sentiment that "children are amazing, they will bring richness to your lives" and not "in spite" of their sydromes but "because" of their sydromes.

    They're truly lucky to have you & Charlie as parents and you're lucky to have them as your kids.

  8. Your post today really affected me - I have six kids, one with short gut and one with special needs(encephalitis or something). Today our infant development person came and started talking about Anna's future. I totally felt overwhelmed and tried to get her out the door as fast as I could. She even tried getting me to sign up for a seminar for my other kids. OK - they have loving parents and they also know that Anna is not perfect. Who is anyway? My point is that we should take life one day at a time. You are an amazing Mom!

  9. Remember when they told you about Rett Syndrome if you were anything like me your were terrified. Now we know how amazing our girls are and what a gift to our lives we have. I do beleive that special children come to special people, regardless of science, God has more power by far. I beleive he knew how much you would love and honour these children. How you will make sure these wondorus children will live their lives with the love and respect that deserve. My only wish is that i lived closer so i could be part of your amazing family. Love to you all and I'm here if you ever need me xxx

  10. You have two amazing kids and one amazing husband. Whatever syndromes are labeled on you, it's never something to pity. You will need extra doses of God's strength more than others at times, but what beauty He has created through you and Charlie. Steve, Kaelyn, and I love you guys lots.

  11. Some times I wish doctors, therapists, GENETECISTS would receive training in bedside manner! We have had our share of the doom and gloom speeches about Owen with "professionals". Each time I hear something negative, I say either out loud or to myself, my GOD is BIG and he is the MIGHTY PHYSICIAN! Well, Owen with God have proven many doctors wrong through his 4 years of life! AMEN and ALL GLORY to GOD. I am confident that Brooklyn and Boston will too - they already have!

    Yesterday held a lot of information over load for your sweet family. Stuff no one should ever have to hear. Today is a new day, hopefully one filled with lots of cuddles and love.

    Kevin and I would love to travel up to visit your sweet family when things calm down for all of you! Email me when you have a moment and we can work on getting something on the calendar!

    Kelly and boys

  12. Kelly--

    If you haven't already, you should check out . Their daughter Kennedy has Down syndrome, and they just adopted a little girl from Ukraine that also has Ds. She has some great posts about how she felt when she found out Kennedy had Down syndrome, and I think you'd want to follow her blog.

  13. I hate doctors that make you feel bad. It's just terrible. All those questions about what one did before/during the pregnancy, as if you had any control over the formation of your eggs or the man and his sperm. Ugh. I did have a really wonderful genetist who helped us through Edda's diagnosis, she said something that has stuck with me, the faulty gene is just a small, small part of Edda, the rest of the 99.9% of the genes are part of her (or him as in the case of Boston) too and they make a complete person, so remember that the genetic aberration does not define the child. Edda is so much more than her diagnosis and so are your kiddos. But you knew that already. Hugs.

  14. First of all, this lady should never place blame.. omg. Secondly, her statement is not true. The Mayo Clinic web site says "Down Syndrome is caused by abnormal CELL DIVISION during the development of the sperm cell OR the egg cell". OY. That's really crappy she said that... and regardless it's NEITHER parents fault - there is no preventative measures either parent could have possibly taken to prevent a child from having down syndrome so my vote is that the lady gets fired....

    Hang in there Kelly...your family is perfect just the way it is.

  15. As I read your post my heart is just aching for you. I am sorry you had such a horriable day. Drs do need training in bedside manners and compassion thats for sure. No matter what this is definitly not your fault, its just a fluke thing that happens. I have known both of your kids since they were first born and love them lots. Brooklyn makes me smile just saying her name. She has melted my heart in ways I can not explain, going through her diaganosis with you and your family seemed unbearable. The pain I saw in your eyes for so long was excrutiating, you have taught me so much probably with our ever realizing it. And when I met Sweet little tiny Boston for the first time was unbelievable. I had never seen a baby so little, once again he melted my heart...and continues to every time I see him, I can't wait to see him smile at me for the first time.
    Pitty is something you will never feel from the Petersons. We are here for you whenever you need us, no matter what that may be. Your family has taught ours to be a better family in so many ways. My family loves yours just the way you are. The Butler family will overcome this too and shine very brightly for others to see your courage, your endurance, your strength, your tears when its hard to be tough, your smiles even at times when its hard to smile, and your compassion for others as you have walked your journey and shared it with so many others. I feel so blessed to walk this journey with you and your family. Look up and feel Gods comfort in the hard times.Love Kirk, Janet, Brady and Brent Peterson

  16. Kel, I have admired you as long as I have known you!! You are the most loving and giving person I know. And your family is no different!!! You and Charlie are an amazing couple, and your kiddos are the greatest!!! I know I may not always say the right thing (or ever say it!!!), but I want you to know how much I love you and your entire family!!!

  17. Kelly,

    We are lucky to have the privlege of raising such wonderful children. I don't care what anyone says. Ignore them :) They don't matter.

  18. Kelly-

    Boston is so lucky to have been born to you. I can't imagine a family more ready to love and care for a him.

    I personally think it's wonderful that you don't spend all your time thinking about the fact that he has Downs. He is above all a little boy. Downs is one characteristic of him, it doesn't define everything about him. I'm sure there are potential problems that you need to be aware of, but you can't spend every moment focused on that. You have an adorable little boy that happens to have come from an egg that was a little different. You, yourself came from one that did something a little different than expected...and I'm sure you and your sister wouldn't change that for anything.

    As for the looks of pity, I can't say that people aren't going to give you those. But, pity isn't always a bad thing. It means that people care for you and they are just wishing they knew a way to make life easier on you. They're just afraid to ask about it for fear of looking like idiots...Take it as a sign of love.

  19. Just to reaffirm what everyone else has already spoken...your are amazing parents with absolutely wonderful and beautiful children. Just look at Brooklyn and the accomplishments she has already made in her short time here on Earth. God has incredible things in store for both Brooklyn and Boston, not to mention the two of you! God doesn't make mistakes...He knows exactly what he's doing! He certainly knew the two of you would have the strength of a warrior, the love of family and a faith beyond measure. Yes, He knows exactly what he's doing! You are such an inspiration to all of us. Thanks for sharing your beautiful pics with all of us. We always look forward to seeing them!
    Sending love & prayers your way,
    Randy & Marissa and the kids

  20. This post just spoke to my heart. During the first few weeks after finding out my son had Ds I felt it was all my fault...and the HUGE list read to me of all the things that might be wrong with him health wise did not help. My son is five months old now and I couldnt love him more! I wanted to tell you, even though I dont know you, how amamzing I think you are from what I have read...such a loving Mom, with beautiful children! I LOVE the opening picture on this blog :)