This darling babe is 7 months old. Isn’t she beautiful? I don’t think I’ll ever get over this delightful nugget of love and sweetness. In a role reversal of sorts I believe she was sent to calm my soul, a mama whisperer if you will. I never knew a baby could actually be a source...
One of my favorite pics with one of my favorite people from Alt. Check out Stasia’s blog Thrift Me Pretty. *Sometimes a post needs a theme song–so if you want to listen to a song while reading this post, open this link in another tab. May not be appropriate for work or around little...
Its so inspiring to read this and know that the Alt Summit is an open-armed grandmother to all bloggers. I always imagined it was a secret society that only certain bloggers could attend. You're gearing me up for next year!
And thanks for the O.P.P. reference. I'll be singing that all day pretending I'm supa fly.ReplyCancel
Valerie–What is it about that song? So inappropriate, but so awesome.
So Alt… I will say that I read one re-cap where someone didn't have a great time. She said she actually DID have a couple rude encounters. I'm just putting that out there to be fair and balanced. I'm not sure what the difference was–there are a million factors that could have made the difference. Anyway, I think if you want to go you should! And for the most part I think it is what you make of it. Sure there might still be a rude person or two, but honestly that was just not my experience. Good luck!ReplyCancel
Hi there, my name is Trisha, I live in charming St. Paul, Minnesota. I’ve been happily married to Kent for 9 years now, and humorously parenting Ingrid and Charlie for almost six years. My children came into the world unexpectedly early, and my sweet Ingrid left this world unexpectedly early a little over a...
I've been thinking a lot lately how kids with special needs…we all focus on the day to day problems which can be hard enough and then something happens and the rug is torn out from underneath you. I'm not in a place to compose my thoughts very coherently but I felt I had to share. I'm not a parent of special needs children, I'm a sibling. My parents have four kids. First was T, born with spina bifida, 35 years ago. A year later, they had E, born 3 months premature, weighing in at 2.3lbs. Luckily, after a rough first year, she is totally fine – no health issues at all. then me (im fine too!). then J who is autistic/developmentally disabled. E and I have both moved out of my parents house, but until recently, my parents had T and J living with them, as well as my maternal grandmother who had developed COPD (on oxygen 24/7, unable to walk anymore). 6 weeks ago my grandmother gave up the fight. she died with hospice care at home, and as horrible as it may sound, we were all devastated but 'ok', knowing that she is at peace now. T and grandma spent every day together for the last three years, they were insanely close. So when T seemed out of it for a while we attributed it to her sadness. To be honest, despite her spinda bifida, we never thought of her as having special needs. Sure, she was in a wheelchair, but she could take care of her self. Grandma and J always need more assistance. Finally, a few days after grandma's funeral we convince T to go to the doctor. Turns out, she had a bed sore on the bottom of her foot (which she couldnt feel or see) that got infected. A week after the funeral, my sister is in the same ICU room as my grandmother had been, recovering from having her foot and part of her leg amputated. There was a fear that the infection had spread. I was there with her and she looked so much better and felt better and was joking that "we were all crazy for making a big deal because she didnt use that leg anyway". A week later, she is intubated and sedated after the last procedure they had done, trying to see how much the infection had spread. They next day they tell us it has spread to her brain (attacked the shunt she had put in as a baby due to hydrocephalus). We took her off the machines and she died a few hours before my moms birthday. Although doctors have said to us back when she was born, with her conditions, in 1978, that she would live to se 35, they would have thought we were crazy. unfortunately, we didnt live like that. we had no idea something so stupid could take our T from us. The guilt that we feel for paying so much attention to the health and needs of grandma and not realizing that T was falling ill…. I don't know what my message is supposed to be here. and I guess whatever I could possibly say, many of you know. Don't take anything for granted is the obvious one, but we always lived that way too. We always talked about how lucky we were to have dodged so many serious problems. Sure, T couldnt walk, but she was mentally fine and had no other health problems, and J is also physically healthy and mostly happy kid…..we always said 'it could be worse'. I'm rambling now but this is still fresh and this spotlight struck a chord with me. Also, maybe some of your readers have any advice for explaining death to special needs kids? my poor brother is doing pretty ok, but he sometimes still asks when his sister and his grandmother are coming home….thanks for reading my rant – thanks for this site – go hug your kids/siblings/parents/friends/whoever everyone…ReplyCancel
I'm so sorry to hear about your loss… I can see how this spotlight relates so much to your family and what you're going through. I wish I had some words that could help with the guilt or help explain death to your brother… but I don't. I'm glad you came here to write your thoughts and experience. Sometimes we just need to be heard. I have actually done a spotlight from a siblings perspective before–another one that also includes an unexpected death, perhaps that will also be of some help to you. Here it is: http://www.thislittlemiggy.com/2013/03/special-needs-spotlight-ethan-cade-and.html xo MiggyReplyCancel
Last weekend we ventured to over to the City Flea–a lovely little once-a-month market in a great new-to-us park in an up-and-coming part of town. With that many hyphens you know it has to be awesome. And it was. We walked among the local vendors checking out the wares and whatnot. And a funny little...
I'm a bit north of you, in Cleveland. First, i wanted to mention that Ohio has some fantastic adaptive sports (google gateway to gold cleveland for what I did this past weekend!). You should definitely look into getting Lamp involved! I really think that Ohio is one of those states whose identity is about being a survivor. We have come through some really hard times, economically and socially, and our cities are starting to thrive again. Ohio is a hidden gem. There is so much going on but most people dismiss it. We don't have one central unifying thing, because our state has so much going on. But thats just my thoughts 🙂ReplyCancel
Yochana8–Interesting! I think that's a great trait to have–the ability to bounce back. And I agree…I think Ohio is a hidden gem as well. And I like that there's just too much going on to have one unifying thing…perhaps I should have asked about cities specifically. Cincinnati vs. Cleveland? 🙂ReplyCancel
hmm i don't know. i've only been to cincinnati once and it was as part of a school trip on our way to snake mound, so i don't think i could really compare the two. guess i'll just have to go visit!
although, i do think that northern and southern ohio are very different places, at least socioeconomically. northern ohio (especially the urban areas) is very blue, and southern is definitely more red, although i'm not sure that Cincy is included in that.ReplyCancel
oh, have you seen the hastily made cleveland tourism videos? they're fantastic:
https://www.youtube.com/watch?v=oZzgAjjuqZM&feature=kp
https://www.youtube.com/watch?v=ysmLA5TqbIYReplyCancel
I'm from Ohio and all I can think of is farming and football.
This is cute, and true: http://www.movoto.com/oh/ohio-stereotypes/ReplyCancel
BMarie82–Ha! That's what I think about with Nebraska…well and good, down to earth people. I think these middle states are going to start attracting more attention in the years to come for all their cool, off-the-beaten path ways. And I like the link..didn't know 8 presidents are from Ohio! ReplyCancel
They used to call Ohio "The heart of it All"… And I have found that to be true. If there isn't something fun and new to do with the family in our state, then it can be found in a state near us. My family is always up for road trips, and our location is great for setting out to anywhere. We live in a small town halfway between Cleveland and Columbus! and I love that we have lots of choices for places to go. ReplyCancel
I’m Michelle, mom to four wonderful and very busy daughters and wife to a hard-working father, Matt. We live in a world of princesses and dress up! Our youngest daughter Lydia (14 months) was diagnosed with Medium Chain acyl-coenzyme A dehydrogenase deficiency (MCADD) when she was about a week old. MCADD is about 1 in 15,000...
Trying her foot at the xylophone. A scene from the library last week: A little girl spends a few minutes assessing Lamp then walks up to PSP and says, “I feel so sorry for your sister for missing an arm.” I’m not sure PSP knew what to say, but I think she just smiled and...
Lisa C.–Well I think it's the part about assuming what their struggles are. I've had people look at my daughter when she's having a bad day, maybe throwing a fit and ASSUME it's because of her limbs. That's ridiculous! She's a person who has bad days that have nothing to do with her limbs. Will she have bad days because she's sad about her differences? Sure. But we all have bad days about our limitations, looks, etc. Empathy and sympathy just seem to come from a different place…yes it can be a very fine line. Thanks Lisa!ReplyCancel
She is so wise beyond her years in this aspect. I truly feel that this is part of her gift and will not be shocked to hear of her impacting the lives of everyone around her. And her sisters too, showing people what is truly important. Seriously, your girls are pretty amazing. Also, I really don't think I understand the receiving end of pity at all. But my mind is always being opened and I definitely agree with how you have described it.ReplyCancel
Hi Miggy,
I've been reading your blog for a couple of years now and have never commented but this post is just so thoughtful that I wanted to respond. I think you really nailed it. When we pity we aren't really paying attention. When we don't pay attention we tend to reduce our reaction to a simple emotion. Something like pity just isn't complex enough to be useful when connecting with another human being. It happens in the other direction, too. I bet you have people who simplify their feelings about your daughter to what might seem like worship. "She is so strong! She's my hero!" No doubt it is easier to hear these things but they, too, are instances of people not paying close enough attention. There have got to be more refined ways of interacting with our children with disabilities than the two very flat extremes of pity and hero-worship.
Rachel in NC
(My son has fairly significant dyslexia so we as a family have felt the pity of family and friends. My son has developed quite a sense of humor about his struggles but we have become sensitized to how certain concepts many of us take for granted just become completely useless for understanding the experience of a child with a learning difference. For us it is the concept of "smart.")ReplyCancel
Rachel–Yes, I'm so glad you mentioned the other extreme…hero-worship can be just as damaging. In one sense I get it…people are drawn to my blog even in large part because of Lamp. She's a cute kid with an extraordinary body. But yes it's hard when I feel like she's given preference over my other kids just because she has limb differences. I've even seen this with grandparents! It's a tough balance. ReplyCancel
I understand what you are saying. I think the thing that bothers me the most is that people think that our special kids aren't normal. They don't get it that they are smart, loved, love, beautiful inside and out and are just normal kids with something a little different. I wish I could give you a hug when people hurt your feelings. It's harder that if they were talking about us. It's the mother bear in us. Lamp is beautiful, as I have said before She is amazing in her thoughts.ReplyCancel
The heroic action here is the way Lamp reacted to the little girl. She didn't get offended or upset. She thought of how she could help the girl to understand her better- and in such a Christ-like way. She understands that it is not her with the problem – the problem was the perception that the little girl had. That is pretty amazing to me, and something that I totally could learn a lesson or two from. ReplyCancel
Maybe this isn't something you want to hear or want to have written on your blog, but I'm going to trust that you can delete it if you choose to and post it anyways. Growing up Southern Baptist, I often heard "bless her heart," or "poor thing," or "that's just so sad," or, "I'll be praying for him," whenever the topic of anyone different came up. Gay people, non-Christians, people with mental illness, even people who just liked to dress differently. I spent the first 18 years of my life in church, hearing that sort of pity placed upon those who we decided were "others." Imagine how devastated I was when I grew up and realized that I was a lesbian, didn't even really believe in God, suffered from mental illness, and you know what? I even like to dress a little differently than what my church might approve of. Growing up hearing that sort of pity placed on everyone whom I felt was like me left me feeling like I was worth nothing. To this day, nothing makes me angrier than being pitied for who I am. You put that feeling into words beautifully here. Thank you for that. Much love to you and your girlies xoReplyCancel
Forgive me, all I have right now are iPhone/instagram pics. You can follow me on insta at thislittlemiggy. Hey. ‘Sup. Where you guys been? Anyway, we’re here in Cincinnati. The nervousness, the excitement, the calm, the fears, the confidence, the questions…. we brought it all with us. Do I feel like we made...
Laurie! I will! Let me just say I've felt like such a jerk for a while now…see when you kindly gave me those two big boxes of supplies I put them in the garage and didn't open them until we moved to SA. Then once I opened them I was like WHAT? This is A LOT of really nice stuff. All the scissors, hole punches, etc. I never wrote a proper thank you–I should have before I opened them anyway–and then I felt so bad after realizing just how much stuff you gave me and the girls. I'm so glad you're still reading so THANK YOU. We use those supplies all the time. If we're in your neck of the woods we'll say hi for sure!
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As a native Cincinnaitian I admit my bias, but I still think you will end up loving where you live. A Graeter's near by? That's the stuff childhood memories are made of. And when you have time, take your girls to Kings Island for a day full of fun. I can't think about summer in Cincinnati without thinking about eating LaRosa's pizza underneath the Vortex roller coaster at good 'ole KI. ReplyCancel
As I got to the end of your post, small tears of nostalgia, jealousy, hope, happiness, and a host of other indefinable emotions made their way to my lashes. Jealousy that, as an Arizona/Utah girl who's never been east of Colorado, I haven't yet had the experience of seeing fireflies. Nostalgic for a time when my children were little, rather than teen aged; when their victories came a little easier and their losses didn't seem so potentially devastating. Hopeful at the knowledge that life, like Cincinnati and the 4th of July, is what we make of it.
Welcome back! Your neighborhood sounds amazing. If you need recommendations of the best restaurants or kid friendly places to take the littles, shoot me an email! Cincinnati has SO much to offer right now. (And you should go to City Flea this coming Saturday in Washington Park in Over-The-Rhine)
We also live in Cincinnati and also just moved a few weeks ago. I grew up in rural WV and have lots of memories of fireflies – catching them, watching them, chasing them, etc. But I have never seen anything like the magic that happens in our back yard every night. There are thousands, maybe even millions of them, and they blink past the treetops. You're completely right, way better than a fireworks show. But the best part has been watching our daughter watch the fireflies. She is 12, and we just adopted her a few months ago. The "firsts" we get to experience as first time parents to an older child are pretty awesome, and I doubt think anything will ever beat "first automatic car wash" in terms of pure joy, but "first firefly viewing"is way up there in magical awe and wonder. Truly priceless. ReplyCancel
Jennifer–OK, I want to know what part of town you live in because I don't think we get thousands upon millions! That sounds amazing! But even what we have is pretty awesome. And so cool to hear about all your firsts with your daughter–that's amazing. I need to hear more about this first automatic car wash–haha!ReplyCancel
Hey, I'm Amy!
I'm an author, artist, and disability advocate. I live with my handsome husband and three beautiful daughters in Cincinnati, Ohio.
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Miggy, I wrote a blog series "DIY Moving Tips", which includes unpacking. Although it seems you're pretty far along in the process, so it might not apply to you at this point. 🙂
http://enthusiasticfantastic.blogspot.com/2014/05/diy-moving-tips-unpacking-your-new-home.html
We've been in our house for a year and a half and we are still trying to set up and decorate. It's crazy. I didn't think having a newborn would set me back so much. I mean, why would it? I would suggest a babysitter for sure and a few days of mommy + helpers only. It's totally worth it.
PS. You're killing me with this cuteness 🙂
The best part about that wall color is how great a backdrop it is for your lovely baby girl! Don't stress the unpacking- you'll get it done!