Its sorta unofficially official, but we’ve decided to stop using Lamp’s prosthetic arm. At least for now. I think that’s the first time I’ve said it outloud. From the outside prosthetics seem like a no brainer. A prosthetic arm allows her to have length, reach and an elbow–something that bends and allows a hand-like...
Hello, my name is Jennifer. My husband Collin and I live in New York City with our two children,Violet and Simon. I am a stay at home mom and Collin works as copywriter at an advertising/branding agency. We met each other through mutual friends, married and decided to call this amazing city our...
Isn't it always interesting that anyone who has a judgmental/harsh comment doesn't feel confident enough in their own perfection to not be "anonymous"? Hmmm… says something, doesn't it?
In no way did I sense any "denial" from Violet's loving parents that was beyond simply trying to sort things all out in your head as loving and concerned parents. It is clear that they want to help their daughter and are doing everything they can to do that! What a beautiful family! I just hope that Jennifer can ignore this particular "anonymous" commenter! Don't let their ignorance taint your positive experience here on Miggy's blog! ReplyCancel
Any parent brave enough to be vulnerable about something that matters so deeply to them should be applauded and supported, never criticized. There is simply no place for that, especially here. You may not know them but I do and they are amazing. Their children lack for nothing. May all families be as strong as this one. ReplyCancel
If Violet's mom is reading: Has Violet ever had an eye exam? Some sensory or processing disorders can be linked to visual processing disorders. A behavioral optometrist might be able to add some insight to what her OT is already doing. Vision therapy and OT can go hand in hand! No judgement here 🙂ReplyCancel
It's interesting you bring this up an eye exam because I had the same thought about a week ago! I've never heard of a behavioral optometrist before. I wouldn't be surprised at all if Violet has already developed poor vision since she's genetically pre-disposed to it. Both her dad and I wear glasses or contact lenses and definitely cannot see well without them! She has a well visit at her pediatrician soon so we will be sure to bring up her vision then, thanks for reaching out 🙂ReplyCancel
I love love love love this! My cousin was born prematurely here in Ireland and always had certain issues and delays due to prematurity but it wasn't until my aunt and uncle moved to the U.S that he was diagnosed with SPD, cerebal paulsy and a few other things. I love reading about SPD as most people aren't too aware of it and we can feel judged about his behaviour and certain aversions when out in public. SPD is a challenge but it is also a part of the boy we love So it has to be embraced. Thank you so much Miggy and Jennifer! Violet is just gorgeous and I love that awareness can be spread!ReplyCancel
I'm so glad to read about Violet's progress here! As a close friend and neighbor who is lucky enough to interact with this amazing family on a regular basis, I can add that Violet is a wonderful little girl with terrific parents who are all doing a great job facing a challenging situation. We love them so dearly.ReplyCancel
I am so glad to read about Violet's progress. My son initially had many of these symptoms which we thought were a result of having open heart surgery at 5 days old to correct CHD's. I know how frustrating it can be in the beginning to get a dianosis. Kudos to you for following through and getting some answers and a diagnosis. It takes a lot of patience and time as no two children are the same no matter the diagnosis! Sounds like you are doing an amazing job. Also, we have noticed huge improvements in our son since we had another baby. Like you mentioned, it is so rewarding to watch them play together and help each other…and challenge one another. Wishing you & your family all the best, KristenReplyCancel
One thing I think I’m good at is being happy for my friends’ successes. Right now I’ve got some friends out there doing some cool things and I thought it would be fun to highlight them and their accomplishments here. There is definitely a range of closeness with each of these friends, but yes I...
There’s no denying the heat here, it pounds into your body from the second you leave your air conditioned house to the second you get in your air conditioned car. Add in the record level rain storms we’ve been having lately and it’s been positively tropical ’round here. And the sad truth is, it’s just...
Here are a few things we did:
* Made a list of every board game we owned and played them all at some point during the summer, kept up with who won each game.
*Indoor Olympics–make up any event you like.
*Line up characters on the stairs and throw a ball to knock them down, or roll a ball from the top to knock them over. Keep up with how many you knock over on each turn. ReplyCancel
Cornstarch and water is always fun! Take them outside and let them paint their bodies then run through a sprinkler to clean up, let them play in shaving cream (either on the table or in the tub), bubble painting is fun, just mix dish soap and water in a bowl, add paint(the more paint you add teh darker the painting will be)use straws to make the painty water bubble up then lay a sheet of paper on top you will get some pretty designs, make "fluffy stuff" by mixing one can of shaving cream with 2 boxes of corn starch it alot of fun to play with 🙂 homemade playdough is always fun too!!ReplyCancel
I'm not a crafty person- even getting down to Michaels on 100th feels like an impossibly hard errand for some reason, I don't have a back yard, and we pay for our AC through the nose. I usually try to escape to Canada! This year that's not happening, and I'm sure I'll reference this post and the subsequent comments for ideas many times.
I grew up in Texas, so I'm used to Texas summers. My mom used to give us an ice cube to draw on the sidewalk (we'd sit in grass along the sidewalk so we wouldn't burn our behinds). We'd go get a new piece of ice when our picture evaporated or our ice was too melty. We've done the makeover thing with Scarlet and she loved it too. Now that the kids are a little older, I let them do some cooking and baking. Pudding/Jell-O desserts are a favorite task. We swim, a LOT. They have swim lessons nearly every day this summer, but the rule is the downstairs and their bedrooms have to be clean before we go. They get about 30 min playtime on the computer each day. We read, a LOT. This year, we'll be signing up for the free bowling, too, so we'll see how that goes. Something else I'm considering is having them help clean a park and then we'll do a big-ish reward for that. There's also the free movies at the theatre during the day. Then there's always the park, but I like to do that in the early morning/evening to avoid the oppressive heat. The biggest thing is the grandparents will take turns taking 2 kids each for 1 week, then switch, so I'll just have baby for 2 weeks straight. Not sure if I love that or hate it. There's a lot of free stuff to do in San Antonio, so we'll try to take advantage of all there is.
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Your girls looking darling all dolled up! We haven't gotten past nail polish over here. I'm afraid there might be no going back if we tried it.
Have you seen this site: http://www.modernparentsmessykids.com/category/special-series/play-theme-cheat-sheets. We got a couple of cute ideas from here.
Also, I'm interested to hear how your road trip goes. The limb difference really rules out a lot of activities in the car seat for us. We're kind of at a loss beyond the Tablet and books on tape. I'm looking for suggestions if you have any! Thanks, Jessica ReplyCancel
Baking soda and vinegar volcanoes!
Cement painting (much like the ice cube idea) clean yogurt cup, water and a paintbrush.
Marshmellows and toothpicks
Full body tracing
3-D art with the recycling bin
Okay, that's all I have for now. Keeping the kids happy and your sanity good can be a bit difficult in the summer, sometimes you just have to breakout the Haley Mills and Shirley Temple.
Hello Miggy. Thanks for the opportunity to tell some of our story. It is a complex story so I will do my best to keep it short. My name is Gaye and my ex partner’s name is C. When still together we fostered two babies 4 years apart–J when he was 4 months old...
Gaye, I love reading your story, and I echo Miggy's sentiments. I would never have chosen to have an autistic daughter, and it humbles me to hear of people who have chosen to give up their quality of life (sleep, money, travel, friends, etc.) to raise kids with extra challenges. These stories remind me how much joy and meaning is imbued in these experiences – that it's not something to shy away from or fear. Thank you.ReplyCancel
As a foster mum in Australia I was very interested to read of your experience. I take my hat off to you, we have had some placements for years where we were dealing with some extra challenges but not to the extent of your boys. We went into foster care as we really wanted to share our lives with children but I am the person in our house with the health issue, a serious uncorrected CHD that meant pregnancy was a big no no. I always love reading the spotlights to see some of the others out there, like these lovely boys, defying the odds & making a real go of life under trying circumstances.I'm sure reading these really brings some hope to families who aren't given a very positive outlook for their child. My parents were told I would survive 6 months, here I am in my 40's & I have always fought to get the most out of life.ReplyCancel
Lamp hugging her new friend One thing B and I marvel at is the innate patience our little Lamp has. It is not the normal patience of a toddler–in fact it is not the normal patience of most adults. Sure she still wants her Cheerios the second she wakes up in the morning and if...
Check out this Erin Burnett story about Aimee Copeland and your "yes" someday answers may come true! Best wishes to you!
http://outfront.blogs.cnn.com/ReplyCancel
there is a girl who lives near me named bre sprecher who only has one arm, and she is also trying to become a paralympic swimmer. you should get in contact with her family! i know they would love to meet another young amputee, and I know bre would be thrilled to be a role model for lamp. https://www.facebook.com/TeamBreanna?fref=tsReplyCancel
Here's a more recent story on Kayla:
http://www.huffingtonpost.com/2013/05/09/kayla-wheeler-disabled-teen-swimming-champ_n_3248506.htmlReplyCancel
The hair bow. Her most requested do lately. The first time she wore her hair like this she told me a lot of kids noticed it… especially Joe. I don’t remember the first time she brought him up, but sometime early in the year PSP developed a crush on a little boy we’ll call Joe....
I remember not being able to talk to my mom about anything. Too uncomfortable! I didn't want that between my daughter and me. When she was young, no problem, I made a point to talk and listen about everything openly and regard her concerns with respect, no matter how silly they seemed. As she got older (pre-teen) I think she, like lots of kids, became a little embarrassed talking about things that might be more private. I started going into her room to talk after lights were out. It was easier to share sensitive things when you can't see the other person's reaction and they can't see you blush, see your tears. I spent lots of long nights sitting on the floor next to her bed, total darkness, discussing friends, boys, sex(!) and her future. There was a sacredness in sharing in the dark like that. A few years later, I did the same with my son. Him pouring out his soul, something I'm sure he wouldn't have been able to do face to face in the light of day. Some things were painful for me to hear, but I hope I took a burden from them by listening. Sorry this is so long, but it brought back such poignant memories for me. Both kids are adults now and both still share freely with me. Such a blessing.ReplyCancel
I'm not there yet with my daughter (she's 3) but man I hope she feels comfortable enough to talk to me about her first crush!
My son is in the 2nd grade, and he's pretty popular among his classmates. Of course, that has me wondering if he has any admirers and, more importantly, wondering if there's anything I can do to make sure he's always nice to them. But when I directly ask him, he completely shuts down.
I make an effort now to take him alone with me on errands, and we always stop for ice cream, where I casually ask how school is, and how his friends are. There usually follows about 30 minutes of him listing all of his friends' favorite video game characters, but sometimes, SOMETIMES, I'll get a little nugget of information that is total mom-gold, something like "Oh, Susie Q said she liked my shirt the other day…" and even though I'm doing mental backflips, I try to stay cool, like "Oh, really…?"
Never, ever talked to my parents about boys growing up. My mom and dad did a really good job of laying the shame on thick when it came to the opposite sex, and particularly the opposite sex. They both regret it now, and no grudges are held, but I promised myself long ago that I would be as open and non-judgmental as humanly possible with my kids re: crushes, sex, etc.
Good subject again, Miggy. You're on a blogging roll!!
haha–thanks Andrea. Sometimes the blogging just flows…
Isn't it great when we can learn from our own up bringing and not just in a knee-jerk 'well you guys super screwed it up so I'm going to do the exact opposite of everything you did" sort of way, but in a really insightful, lets see if we can do this better sort of way? Here's to us trying to forge a different path. Good luck to us both. 🙂 ReplyCancel
You probably don't realize this, but you taught me this concept years ago in a conversation we had when W was little. I remember you telling me that you thought it was good to have these conversations when they were young, so it wasn't awkward when they got older….thank goodness you told me that because talking to W about boys now is easy 🙂 I also love the idea from another commenter about talking to kids in the dark, after they're in bed. I'm not to that stage yet, but I already know I'll need major help with teenagers (taking care of babies and toddlers sounds so much easier to me!) so any advice I can get now, I soak it up. I'm glad you posted this! ReplyCancel
My 12 yo daughter still talks to me about boys. She was "asked out" by a boy this year (in 7th grade…) and wanted my advice about it. We have a "no dating until high school" rule in our house which actually is a great thing to relieve my kids of the pressure to participate in middle school dating (it is rampant….). She wanted to let me know she was asked out (she felt flattered) but also wanted validation that not being interested in dating at age 12 was OK (aside from it being prohibited in our family, she is just not interested in dating…..)since there is a lot of pressure among kids at her school to date someone. She also wanted to vent a bit about the pressure. I hope we always have open communication like this. ReplyCancel
I think the book, "How to Talk to Your Child About Sex," by Linda and Richard Eyre is really good.(I follow their daughter Shawni's blog at 71toes.com) It gives great discussion prompts starting when they are super young and then advises that the BIG talk happens around 8 when they will understand butare still young enough to be comfortable, curious and excited about being given new imformation and responsibilities. If you are open and comfortable talking about sensitive subjects when they are little the same openess will be there when they are older. I really recommend the book and wish I would have read it when my kids were a little bit younger. ReplyCancel
Thank you for sharing this wonderful story. I have a very similar story about my 7 year old son…he now has a fiance:-) At 7. Like yourself, I try not to ask too many questions or seem too interested in the "fiance", but sometimes I too cannot help but ask. I love the idea of talking in the dark. I honestly hadn't thought too far ahead to my boy sharing with me in the future so I am so glad you brought this up. I will work a little harder now at keeping the conversations flowing-which hasn't been a problem…yet. My story is here if you want to read about "the proposal" and how we have tried to let the 7 year old know he can't really get married until he is 18, but yet keep it all light and fluffy.
http://www.onein1hundred.blogspot.com/2013/02/a-different-kind-of-broken-heart.html Thanks again for sharing!
My mother and I are very close. I think that's just what usually happens when it's just the two of you in the house (I'm an only child and my father is, well, about as far removed from the picture as an individual can get). Because of this, she made it clear that I could share anything with her, just as she had shared with me. I'd been told how many men she had slept with, had her first time story recounted to me, and of course, been informed of the general birds and the bees things. There was never this barrier where I felt like I couldn't share with my mom. Personally, though, I became interested in boys very early (age 4). It's the romantic soul in me. When I was in pre-school, I had my first boyfriend, and we loved to play out how our lives would be when we got married (very stereotypical 1950's household-style, mind you. I spent my days in the play-kitchen, he wore his father's tie and went to "work" at the "railroad", which was the Thomas the Tank Engine set). However, even at that young age, I didn't want to discuss my romance with my mother. Maybe there was something exciting about having a secret when it came to liking, even loving, someone. But I don't know if that's honestly the reason I don't feel comfortable talking to her about these things. Regardless, I have kept up the secretive ways. I am almost 18, and my mother hasn't a clue as to all of the boys who I have fallen for (and in turn, had my heart broken almost immediately by), nor does she know about the sexual extent to which I have gone with boys… If she did, I know that she wouldn't be happy. I never told my mother about my first, awkward sexual act, on a Holiday Inn couch when I was 15 with a boy with severe bipolar disorder who wouldn't even remember come morning what we had done together. I know I could have told her about the situation, cried into her chest about how one minute he said he loved me when our hands were on each other, and come the following afternoon he couldn't remember what we had done together, but I did so vividly. I guess part of me knew she would be ashamed of what I had done with that boy, that boy she felt was sick and beneath me. I could have told my mother about how when she finally allowed me to have my first night away from home for a sleepover, (at the age of 16), I spent the time having raunchy phone-sex with my best friend's brother, while planning the lose of our virtues to each other, and that's the real reason I spent so many months pining for him.. But again, I knew my mother would be ashamed. She would be ashamed because my mother was an angel of a child, and everyone can attest to it. I'm not a wild child, but I do have a free spirit side of me that comes out from time to time. It makes it difficult for me to do anything wrong (whether it be in the romance department or otherwise) and tell my mother about it without feeling like I let her down because she was so perfect. It's also hard to tell your mother, who sees you as perfect in her eyes, that you are interested in someone who you know she won't think is good enough for you.ReplyCancel
So in other words, to wrap all of this up (because it's far too long…), sometimes children aren't going to share things with you because they like having their secrets. Sometimes they just want to keep it to themselves. They may not want to disappoint you with their bad choices, or their sense of adventure, especially if they don't think you've made the same mistakes. I don't know if that's a good thing. Maybe because I am 18, I still have the feeling that I don't want my mother informed about my love life, but I know that'll change. So you should try to keep close conversations with your kids, especially when it comes to matters of the heart. Don't let them get so absorbed in stupid people that they feel broken down because it's not going to matter a year after the fact… I was never really told that, or at least it wasn't stressed. But please, don't smother them. I think I was a bit smothered, which made me want to keep more secrets…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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you are amazing parents and not that you need support or validation or approval from anyone, but I do support you 100% because you always put your kid 1st.
Bravo and best wishes xxxx
I love this post. Our son was born without most of his left arm and people often look at us like we're crazy when I tell them he'll probably never use a prosthetic. Truth is, he doesn't need it and would probably hate it. I think they can do great things for a lot of people. What a cute little girl Lamp is. I would totally hook her up with my son. 😉
great post and you I am sure it would have beena tough decision but moms know the best for their children
Do you read Jen Sullivan's blog, olivespearls.typepad.com? She has two children with upper limb differences (both congenital) and has discussed why they are not pro-prosthetics, for many of the same reasons you mention here. :o)
My cousin had two prosthetic arms, one that was just a plastic arm with a hand and when he was older, one with a pincher on the end. He never wore them regularly. In fact, we used to chase each other with the pincher arm! He's going on 30 now. My son also has a friend without the bottom part of his arm. His mom said his first sentence was "No Helper Arm". They went to a dr recently that had a very high-tech prosthetic. He could grip cans and do all sorts of stuff with it. While it was amazing, he didn't want it.
I think it's important to follow our children's cues, no matter what we/they are facing, no matter how big or small.
Very different yet similar, I am left handed. Not a disability or even a blip on the radar. Yet there are all sorts of things marketed for left-handed people. It makes me laugh. Every person has some kind of issue or challenge. But we cannot make up new products or special allowances for every little thing! Part of being a functioning, contributing member of society is learning to adapt to the situation you are in. Lamp being able to do things on her own (without helper arm) will benefit her, even if later in life she chooses to use one for certain tasks.
Lamp is an amazing little girl and your family is awesome.
We had a friend at school who makes prosthesis (including his own and for his son) and he said most people who could use them often choose not to; especially kids. And that they find themselves happily capable in a zillion different creative ways. Go Lamp.
Miss Iowa !!
http://now.msn.com/miss-iowa-is-one-armed-woman-nicole-kelly?ocid=ansnow11
Your little sweetie is amazing and will be just as amazing each and every year of her life!
We're not currently pursuing prosthetics either. I think it's so difficult for us when they're little because we are afraid of missing "the window" without really having a lot of input from them. I mean if being made to go to ballet can send you to therapy, think of what your parents deciding for you that you didn't need a prosthetic arm might do!
I'm afraid I was woefully ignorant about prosthetics until we were in the position where we were considering one. Then I was shocked. What do you mean there are no shoulder joints? What about all the cool stuff I see on TV?
What I do know is that our kids make our world broader and our imaginations bigger. We can't ask for much more than that.
Yes, Lamp IS amazing! She is a shining example of "Eternal Perspective"…. She is an inspiration, and so are you dearest "Baby Girl"!
All my love,
G.G.
Thank you for the two links you provided at the end of the post. I didn't know where you were coming from and why it was an important decision you had made to put the prosthetic arm aside. Very enlightening! Good for you being in tune with your daughter!
Loved reading your blog. I found it via you article on aol. My friends husband John was born without any arms and has a motivational website and facebook page that I find so uplifting! So many of your stories that you have shared remind me of what John and his family have experienced. Feel free to check out his new facebook page https://www.facebook.com/#!/JohnFoppeWorldatYourFeet/info or
his webpage. He has a lot of photo and stories from his childhood!
What an amazing family you have!
Hello! As anon mentioned above, I have 2 children with congenital LBE amputations. They've never used prosthetics and thus far have never wanted to. They tie their shoes, they both knit, and in every case, they have found a way perform a desired task before we've had a chance to think of an adaptation. Lamp is a beautiful little girl and I applaud you for respecting her preferences loud and clear!