all right. i'm not a huge number watcher on my blog, but i have been a little astonished at the number of hits i've bee getting lately. i have 98 official followers, but so many more people than that reading my entries.
i started this blog to vent and connect to other families when abigail was diagnosed with NF1 3-1/2 years ago. it has morphed into a little more than that with the addition of diagnoses for her, and a little with multiple diagnoses as well.
so, more to humor me than anything, if you read this, would you leave me a comment with how you ended up here? adoption? NF? mastocytosis? Down syndrome? i have the cutest kids ever and you have to come see them? whatever is fine, i just want to know more about all of you.
and for your time and effort to actually comment on this i'll make a super cute headband to send to one commentor. maybe even two if i'm feeling crazy. i'll let you choose colors.
so just leave me a comment, and feel free to leave it as anonymous. i just want to know how so many awesome people ended up here!
happy new year.
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Shilo. :) And I still have two weeks to get over and drop some things off for her before the madness of school starts again.
ReplyDeleteLucky you, I am family! :)
ReplyDeleteWell, I read it because I know you and think your family is awesome!
ReplyDeleteI was in the Ronald McDonald House. You were in the Ronald McDonald House. We locked eyes. You looked normal so I sat at your table. As it turns out, we are equally abnormal. It was fate.
ReplyDeleteNF. Thanks for sharing your journey with us! I enjoy and am often encouraged by your posts.
ReplyDeleteVicki
I randomly pop in when you mention it on FB because I enjoy your insights and wit, and appreciate your perspective on life.
ReplyDeleteEric
I'm here because I love your little, and the whole family. Although I don't think I'm an official follower...
ReplyDeleteI knew you before you had opinions about any of these topics. I still like you, anyway. ;)
ReplyDeleteBecause I love you and your littles... in real life. :)
ReplyDeleteI don't remember how long we've been pals now. We both have kiddos with NF and live in Indiana....we were meant be friends. You inspire me to be a better person and mama. I read when you remind us on FB.
ReplyDeleteStacey
I googled something like "blenderized diet blendtec" as we were also blessed with a great experience with the company and I wanted to see how other people were sharing that good news. Turns out I'm from Farmland, went to BSU and you and I have mutual friends. I need your advice on the BD topic, so I will reach out via FB message soon :) I truly enjoy your blog!
ReplyDeleteDown syndrome originally. Two beautiful girls keep me coming back - and your love for Jesus.
ReplyDeleteNF. Our 5 year old son has NF-1.
ReplyDelete~Kelly, Scott, Nolan, Barrett & Travis (5)
NF - my almost 6 year old has it and I appreciate seeing/reading the experiences of other NF families. And your girls are stinkin' adorable :)
ReplyDeletebecause i love you and your family and i knew you before you had a little and a big! heck even before you ever even thought of becoming a "mann"! <3
ReplyDeleteHello, all the way from Australia !! I have been following you and your family for some time, I think I originally found you on the Inspire forum for NF1. My son is about the same age, maybe bit younger than Abigail ? he has NF1 as well, and I have not really connected with anyone who has any association/experience ( or even heard of NF1 !)
ReplyDeleteI have loved and shared and laughed out loud, and shed some tears with your family's journey, you have a brilliant, honest way of writing and so thankyou for sharing !!!
Tina xx
Because I'm lucky enough to know you in real life!!
ReplyDeleteTo feel connected and know how to pray since we're far away now!
ReplyDeleteI don't know how I first found you, but obviously through a FB down syndrome connection. But, I'm so glad I did. You speak my language sister.
ReplyDeleteHello! I am from Michigan and read your blog all the time. I found it through the MacDonalds bkog abd find your blog to be so inspirational and humerous!
ReplyDeleteAfter meeting you at Anna's shower, I've loved reading here about what's been going on with your girls, knowing how to pray for you, and feeling connected to your story!
ReplyDeleteI'm from Seattle. I clicked on your link from a Ds blog but I don't remember which one. I enjoy your posts!
ReplyDeleteI'm here.
ReplyDeleteI'm Karen K's sister, and followed the link from her blog. I started reading you regularly when my littlest little (18 months) spent 6 weeks in the NICU. Now I just visit to read your funny takes on motherhood!
ReplyDeleteAmy
I found your blog after reading a fb post about Abigail by a mutual friend of ours. But I also have a cousin who has Down Syndrome. He is 16 years old, and is the neatest, sweetest guy! I have enjoyed keeping up with your sweet family, and I check your blog often for updates!
ReplyDeleteThis is Natalie....we spoke on the phone after you got Shiloh....I go to church with some of her birth family. I love to watch your babies grow! We are STILL waiting for our precious one with DS to find us.......
ReplyDeleteI found your blog thru a another blog about adopting a child with DS. I have kept reading as you have a pair of cuties and finding out my niece as has mastocytosis.
ReplyDeleteYou commented on my blog, and the rest is history (:
ReplyDeleteJust a long time Revolution friend. And now a mama to young kids friend.
ReplyDelete(Although the headband is cute, it can go to someone else.)
I first stumbled on to you when I was Googling adoption several years ago. I found you again because of your interest in homeschooling and our mutual PT. you seem like a kindred spirit. Tamah
ReplyDeleteI can't remember how I found your blog, but probably thru another adoption blog. We have 8 kids, five adopted (one domestic newborn and four international). Four are raised and four are teens. I just enjoy reading about the love you have for your kids...they ARE cute and amazing! I also have a friend whose daughter was born with Downs. She's about 13yrs old and nonverbal. She has a voice machine of some type..newer version than the VOX she used at first. My sister-in-law is her middle school special ed teacher in our local school. I'm in awe of my friend, who does so much in our community, encourages so many, and also parents her very special daughter as well as another still at home (three raised and gone from home). Her daughter has shown sheep in the 4H fair for a number of years. Her younger sister or older brother help her lead them around the show ring. The family does all they can to get her involved in activities, even though I know it would be easier not to go to so much work to do so, as so many things she is unable to do for herself. It is a testimony to the value of every individual, no matter what they can or cannot do, as well as to the love they have for their child and sister.
ReplyDeleteNancy in the Midwest
I came across your blog looking for others about kids with NF. My daughter is five, actually six later this month, and before her diagnosis at 14 months had never heard of the disease. Her presentation is very complicated and severe according to her doctors, but she always has a smile and kind words for everyone. I see a lot of my baby in your little NF Hero!!
ReplyDeleteI have a blog too. Come checking out if you like to get the details. Www.jsfrey.blogspot.com
Happy new year!
Julie
I came to your blog looking for other ones about kids with NF. My daughter is 5, 6 this month, and has NF-1. She was diagnosed at 14 mos, and has what her doctors call a pretty severe case. The pNFs have consumed all of her right leg, and part of her abdomen.
ReplyDeleteI read your blog often, mostly to know that I am not facing this illness alone. I'm not the only one working towards and praying every day for a cure. And my daughter isn't alone either. There are other kids out there like her, and together they will persevere despite amazing difficulties.
I have a blog as well. You can see me, my daughter, and our journey with NF at www.jsfrey.blogspot.com.
Thanks for writing! Julie
I may be wrong, but I think I found you by clicking on a link about adoption. It has been awhile now that I have had your blog bookmarked. (prob. about 2 years?) You have a beautiful family and I thank you for sharing them with us:)
ReplyDeleteHi, I'm a mom of 5 and I found your link on the nf inspire Page. I also saw you on the nf mom's rock but have since left Facebook to focus more on my kids and homeschooling. My 2 youngest are special needs. My second to youngest was adopted at birth and was born with over 9 substances in her system and there are many complications due to that. My very youngest has nf. I enjoy your Blog very much!!!
ReplyDelete