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Can We Talk About Lorena Bobbitt?

Last week I  finished watching the 4 part docuseries Lorena on Amazon and I loved it. I was surprised by how little I knew about the real story and even more surprised to find myself so enamored and impressed with Lorena herself. If you’re thinking “What? The woman who cut off her husband’s penis? You’re impressed with her?” Yes. Can we talk about it? Beware, if you haven’t watched the series there are spoilers ahead. (And you really should watch it.) 

Here’s what I knew about the story when it happened in the 90’s and in the subsequent years. A women, Lorena Bobbit, cut off her husband’s penis in a fit of rage. (I can’t remember if I knew about the alleged abuse.) I knew that miraculously, the “organ” as it was repeatedly referred to in the docuseries, was successfully reattached and later Mr. Bobbit took his famous organ and went on to star in some porn films. That’s about all I knew. 

Turns out there was a lot I didn’t know. I didn’t know other salacious details like the fact that immediately after the horrific act, Lorena fled the scene and drove away with the severed penis in her hand, flinging it out the window into a random field. (!) I didn’t know she was an immigrant with little family and support close by. I didn’t know she was a 20 year old virgin when she married her husband. And, most importantly, I didn’t know she suffered years of abuse, including marital rape and sodomy, at the hands of her husband. I suppose I should say allegedly, but after watching the series, I believe her. And I didn’t know that while her ex-husband has gone on to be accused of more domestic violence, arrested for theft, has been unable to hold a steady job (both during their marriage and since) and that he STILL WRITES LORENA LOVE LETTERS (let that one sink in), Lorena, on the other hand, has gone on to claim her “American Dream” by staying together with another partner for over 20 years (never re-married), have a 13 year old daughter together, and she runs a nonprofit for survivors domestic violence.
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[readmore title= “Click through so we can talk about Lorena!”]

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Favorite Beautiful + Diverse Children’s Books

Since my book, When Charley Met Emma, is ONE WEEK AWAY from its official release date (what?) it seemed appropriate to compile a list of some of our family’s favorite children’s books. Many of these will probably already be on your book shelves, but maybe some of them aren’t. I specifically wanted to feature the books I find beautiful as I believe beauty is an important element in good design, storytelling and because beauty conveys a sense of value. That’s one of the reasons I was adamant about When Charley Met Emma being a beautiful book and I was so grateful that the illustrator I wanted from the beginning, Merrilee Liddiard, was ultimately the illustrator for the book. Also, many of these books stand as great examples of diversity in our home; skin color, ability, gender, religion and even how people live and exist in the world. Not all of them are diversity focused, but many are. At the end of the day these books are the ones we come back to time and time again. This is by no means an exhaustive, comprehensive list,* but they are definitely some family favorites enjoyed by all.

Also, I wanted to point out that we recently hung these book tray shelves in Zuzu’s room where I take advantage of the beautiful cover art and make them double as the art for the wall space. So this post has been on my mind in more ways than one! (Also, just so you know none of the links are affiliate links–meaning I am not getting a kickback from any of this. Not that I have a problem with affiliate links, but just an FYI.)
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[readmore title= “Click through to see 24 of our favorite children’s books.”]

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Special Needs Spotlight Then + Now|| Tatum

Hi guys! Miggy here back with another Special Needs Spotlight Now + Then update. I first interviewed Erin about her daughter Tatum, who has Down syndrome, back in 2016. You can read the original spotlight here! 

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Miggy: Welcome back Erin! I’m so excited to be doing an update on your daughter Tatum today who was first featured in the spotlight series back in 2016. First, lets start with a brief refresher of your daughter–what is her diagnosis and how does it specifically manifest in her?

Erin: Tatum has trisomy 21, more commonly known as Down syndrome. I think that there is a common misconception that Down syndrome manifests in the same way in all kids with Ds–maybe this is because they share common physical features that are easily recognized and often share the common trait of being quite social? Down syndrome is actually quite variable though! So, thank you for asking this. Tatum has hypotonia (low muscle tone) as well as a significant speech delay. Hypotonia has an impact on so many things–walking, talking, self-care, balance…the list goes on. For Tatum, this has meant that she walked closer to age 2, feeding has been an area of work for her, balance is an area of work, and she will continue to work on speech–likely for much of her life. Tatum is also a very visual learner, is very empathetic, has a huge signing vocabulary and is quite social–all common characteristics in children with Down syndrome.

Miggy: In the years since we first featured Tatum, what has changed the most about her during this period of time? Any unexpected highs or lows you’d like to share?

Erin: I think our biggest accomplishment is that we made it through that biggest adjustment period–the 0-3 years timeframe. If you have a child with a birth diagnosis or a prenatal diagnosis, I feel like you spend those first 3 years really getting to know them, their diagnosis, their strengths, their areas of work, and your resources. As Tatum has grown and her spunky personality has really come through, we’ve learned (and continue to learn) approaches that work well for her and those that don’t work as well. She’s made it through the major gross motor milestones and has made huge steps in communication. She transitioned from Early Intervention to the preschool setting and she made it through a few hospitalizations (for pneumonia) and surgery.

When we talk about the highs and lows of this journey, we often talk about how much more appreciative we are of the highs. Every milestone seems to happen in slow motion and feels so much more triumphant in many ways. Walking independently was so.much.work for her. All of that cheering and work and gait-trainer-lugging-around made her independent steps that much more amazing for us. The lows, on the other hand, keep us in check and give us perspective on our journey. We’ve been fortunate in that Tatum is not really medically complex. We have so many friends in the special needs community (not just the Down syndrome community) who have had really complex medical paths. We are very grateful for Tatum’s health and for great medical care when she has needed it.
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[readmore title= “click through to read more about Tatum’s profound positive influence on others!”]

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To My Oldest on her Birthday

My first baby is 12 years old today.

I feel her birthday in a way I don’t feel my other two’s birthdays. By the time the other two came along I knew I’d could survive motherhood. More importantly, I knew I loved motherhood.

The first 4 months of her life were the slowest of mine. Cognitively I understood what was expected of me as the mom–Do everything and then do it again. And again. Repeat for eternity. And I understood her role as a baby–Be completely helpless. Just lay there. Don’t lift a finger. But the reality of these two worlds coming together had me questioning the basic premise of this agreement over and over again.

So, I have to take care of her, like, ALL THE TIME?
She’s just gonna wake up when she wakes up huh?
No one had to “put her to bed” in my womb, why is it so hard to get her to sleep now?

That last one was a killer for me. Some babies come pre-disposed to sleep. They drift off easy and frequently. I got one of those sleep-resistant babies who slept like a twitchy barracuda for reeeeaaaally short periods of time. But just like the tape deck in my ’93 Volkswagen Fox I drove in college that I figured out had to be tapped on the side ever-so-slightly and then the tape had to be ejected twice before it would play, I eventually figured out the crazy tape-deck-tap-and-eject scenario we had to jump through to get our baby to sleep. (They were surprisingly similar–sing I am a Child of God while bouncing her on your knee at least two times, then pat gently on the bum as she drifted off to sleep.) 

Mostly though, it wasn’t her, it was me. Or more accurately it was postpartum depression. I didn’t get on any medication, although I should have, and so we slowly worked it out together. It would be 8 months before that fog lifted and motherhood finally felt like how it often looked in the magazines. Still hard but finally joyful.
 
[readmore title= “click through to read the rest of my birthday message…”]

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Special Needs Spotlight–Then and Now || Eli

Hi guys, Miggy here! So many of you have said that you’d LOVE to hear from former Spotlight participants to see where they are now and I’m happy to report that today’s spotlight–with more to come–is just that! It’s the beginning of the Special Needs Spotlight Then and Now series and I can’t wait to share these with you! Like you, there are so many people I’ve featured over the years and have wondered what they’ve been up to, how things have changed be it ability or mindset. Today we’re welcoming back Leah and her son Eli who has Cri du Chat Syndrome. You can read their first spotlight here. 

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Miggy: Welcome back Leah! I’m so excited to have you again and for you to share an update with all of us on your son Eli who has Cri Du Chat syndrome. First, let’s start with a brief overview of your son–what is Cri du Chat syndrome and how does it specifically manifest in Eli?

Leah: Eli has Cri du Chat Syndrome and this manifests in different ways in our awesome kid. Firstly, he has the “cat-like cry” and high-pitched voice that comes with the diamond-shaped larynx that is a characteristic of this rare syndrome. Eli also has low muscle tone, resulting in a delay in his sitting, crawling and walking. He had weekly physiotherapy and this was a game changer for him – he worked his little tail feather off and, with the help of orthotics, is now starting to run!

Eli is considered “non-verbal” but we would rather call him “uniquely verbal” because he uses so many methods to communicate! He started with signs and sounds and pointing and has now started working really hard at repeating words and sometimes even short phrases. The amazing thing is that we know he understands so very much and when given the time and opportunity he can and will accurately communicate his needs and wants.

One of the most difficult things is his lack of sleep. Sleep issues are common in Cri du Chat but, because of the rarity of this condition and lack of medical experts of Cri du Chat Syndrome, not much research has gone into how to help our kids get more sleep. We have tried many things over the years but haven’t found a solution yet to get Eli a full night’s sleep. We will never stop trying to figure it out and we have gotten the best advice from other families of kids with Cri du Chat.

Miggy: It’s been a number of years since we first did a spotlight on Eli, in the years since what has changed the most about him during this period of time? Any unexpected highs or lows you’d like to share?

Leah: So many things have changed over the last few years!! Eli was 2 and a half at the time of the last spotlight and will turn 5 in April! How does that even happen?

The biggest thing for Eli is that he has become a big brother this past year!! He loves on his little “Bebe LoLo” (Baby Arlo) and seeing them together makes my heart just melt. The boys along with their big sister Maeve make for a noisy and fun household!!

Over the past couple of years, Eli has been working so hard in his therapy and with the help of his Supra Malleolar Orthotics (SMOs), he is now able to stand and walk independently!  We knew from the start that due to the low muscle tone, mobility is usually an issue for people with Cri du Chat Syndrome – some people use wheelchairs, some use walkers, some use Orthotics and some use nothing at all. We followed Eli’s lead and supported with Physiotherapy and hours and hours of homework!! He is now trying to run after his sister and even tries to get our old dog in on the fun.

Eli is also becoming much more verbal and has really started to take his time to use certain sounds or respond to a question or request. Through Speech Therapy, we realized that we were speaking FOR him at times or assuming an answer when we asked him a question. We learned to ask a question or request an action and then WAIT. We have sometimes waited for 20 seconds (seems like FOREVER) before he answered but gosh darn it! What a great feeling when he responded in his way. It could be with an eyebrow raise, a sign or a word, but he knew that we were waiting to hear what he had to say. That simple gesture opened up something within him and now he knows that we expect him to communicate and participate, not just sit and passively listen! So profound for us as a family!
 
[readmore title= “Click through to read how Leah supports her son Eli now.”]

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Phases of Motherhood

Yesterday my sister-in-law and I were talking about our youngest children who will be starting kindergarten in the next year or two. Zuzu starts next year, and her youngest–a September birthday–will barely miss the cutoff and start the year after. She asked me if I ever take Zuzu to playgroups anymore and I said no, I don’t have the same need or desire to do that anymore and since she goes to preschool 3 days a week, I think she has plenty of social interaction. She said she took her daughter recently and as she watched these mothers with all their multiple young children clinging to them and asking for snacks and crying she thought, “How did I ever do that?” 

Like her, I have found myself having those same thoughts lately, as I see the mothers with a baby in one arm and a toddler at their feet crying because their toast was buttered the wrong way, and I think “How did I ever do that?” It was not that long ago, in fact those memories feel so close I’m often chagrined that my kids can’t recall them at all because in my mind they just happened.

The question of “how did I ever do that?” rings even truer and louder now that we no longer have any nappers.  My life revolved around naps for 11 years as I was not a mother who could ever be chill about nap time. When other moms casually said, “oh she missed her nap today… oh well.” I’d look at them incredulously, in the same way I’d look at her if she had said, “Oh my baby missed taking breaths today… oh well.” In my world nap time was never optional. My children were were treated like the precious packages of dynamite they were that would promptly explode if not gently laid to rest each and every day. Yes it was also my sanity I was protecting as well–the daily break enjoyed, nay NEEDED–because even as the other children out grew naps it was still quiet time for all in the house during that precious 1.5 hours. However, it was also a tug on my sanity to have life–and I mean LIFE–revolve around this precarious and magical time of day.

Years ago I had a friend who had undergone cancer treatment in college and he was telling me about some of the procedures, medicine and side effects he endured while in treatment. After one specific medical treatment he had to take a certain kind of medicine as an antidote for the side effect of “his guts melting out of his insides” as he put it. He had to take this medicine everyday at a specific time to prevent the “gut-melting” and as someone who has been known to sleep through a wide array of alarm clocks in my life I said, “But what if you slept through it!? What would happen?” He looked at me and said, “You don’t sleep through the anti gut-melting medicine.” I felt like an idiot. Oh my gosh, right. RIGHT.

To a much lesser degree but a similar intensity, that was how I felt about missing nap time. We just didn’t do it, because OH MY GOSH you idiots, there is too much on the line here. 
 
[readmore title= “Click here to read more about the phases of motherhood. What phase are you in?”]

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Special Needs Spotlight || Siah

Hi! My name is Sarah, I am married to Eric, and we have three sons that are 2, 5, and 6 years old. We love being at the lakes around us and playing with our dog, Penny. I stay at home with my kids and run a shop called Wolfe Brothers Co (www.wolfebrothers.co). We live near Ann Arbor, Michigan but this summer we are moving to Nashville to allow our youngest son Josiah “Siah” to attend an amazing school for the blind. Siah, was born with a condition called OAVS (Oculo-Auriculo-Vertebral Spectrum). This condition can affect your eyes, ears, and spine, but it looks different for every person and usually only affects one side of the body. It’s caused by one blood vessel forming too small in the first weeks of pregnancy, not allowing adequate blood flow to that side of the body. For Siah, it caused microphthalmia that lead to blindness and sporadic asymmetry on one side of his body. One of the first things people notice about Siah right now is the small tube in his nose held in place by some special tape. That’s because the asymmetry in his facial structure makes it hard to breathe through his nose, so it’s just a soft tube cut to the length of his actual nostril to keep it open so he can breathe through is nose. Its slowly self-correcting as he grows, so we are hopeful that in a year or so it will be gone! Siah is delayed, which is typical for visually impaired kids, and eighteen months in and out of the hospital after he was born really added to his setbacks. Since he’s past all his surgeries and feeling great we’ve been so happy with the progress he’s making.

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Miggy: Hi Sarah and welcome! I’m so excited to have you here today sharing about your family, and especially your youngest who was born blind. Can you take me back to the day you found out your son was blind? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Sarah: There really wasn’t one day that confirmed blindness, but we knew it was a possibility a couple days after he was born. After several eye surgeries and tests, doctors told us they felt based on what they saw that he would probably be totally blind. There was definitely a lot of worry in those first weeks trying to imagine life without sight and things I thought he wouldn’t get to participate in or enjoy. But we had an incredible occupational therapist with a lot of experience with visually impaired kids who told me, “The good news is that Siah won’t miss his sight because he never had it. And I understand why you’re sad he might not enjoy things like going to a Michigan game with his dad and brothers…. but the truth is, you have no idea if any of your boys will like football.” I was stunned in the best way, it was a great lightbulb moment for me. I was never sad my other kids might not enjoy a football game because I could easily imagine way’s they’d enjoy it. But all my kids will decide for themselves what they like and Siah will be able to enjoy a lot of things in ways I couldn’t have imagined before. So, once I shifted my perspective all those worries went away, he is such a cool kid and so much fun to watch discover the world.  
 
[readmore title= “Click through to read Sarah’s fantastic insights on parenting a child who is blind.”]

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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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