Monday, May 02, 2016

A Picture Perfect Mother's Day


I want to thank Garnier® for inviting me to share my thoughts about what makes a picture perfect Mother's Day. I recently wrote about  (but have not yet posted--ha!) feeling beautiful as way to be present and how getting ready in the morning--make-up, hair, clothes--is a great way for me to be able to feel present. I love Garnier® Whole Blends™ that allows you to find your hair care so you can really get the treatment you need, make it beautiful and then forget all about yourself. Thanks for supporting sponsor's on TLM. I hope you enjoy today's Mother's Day post. 

Many moons ago, as a freshman in college I signed up for a beginning guitar class. Ever so slowly, as my practicing overshadowed my anxieties (My hands are too small! My fingers don't work this way!) I started to actually learn to play the guitar. I didn't have much musical training growing up, only what the public school system offered, and so to actually be able to play an instrument, let alone the guitar (which in my mind is the James Dean of instruments) was very exciting to me. When I finally got a little finger picking and about 5 or 6 three-chord-songs under my belt, I thought -- I. had. arrived. You guys, I thought I was really, really good at playing the guitar. As I continued to play over the years, I got better...and better...and better still. As I got better my perspective shifted and I realized something: Oh, I'm not that good. I'm actually very average. Or as many a dude would tell me, I was "pretty good for a girl."

I noticed a similar pattern when I worked my first big-time job after I graduated college. It took me (and my poor supervisors) about 6 months to get me up to speed on such difficult tasks like "this is what a spreadsheet looks like" and "stop typing with just your index fingers." To be fair, it was more than half their fault as they hired a Fine Arts major with a degree in painting. I mean, c'mon guys. But once I finally got my head in the game and figured out the actual job, I thought I was aaaamaaaazing. I was killing it and how did this company ever survive without me and you're all welcome thankyouverymuch. The first year we had a company meeting where they gave awards and such, I was seriously disappointed when I didn't receive an award for all my hard work and my obviously aaaamaaaazing contribution to our company. Years later, while working for the same company I actually did get that award and recognition and this time I was genuinely surprised and felt completely, 100% undeserving. As I got better and better at my job, once again I had that little shift in perspective and I finally saw my role more appropriately, which was that I was one small cog in a big machine and I was no more deserving than anyone else.

I wish there was a name for this phenomenon because what is that? How and why is it that the better and better we get at something, the more we realize our proper place in the context of that world? Really I think it's the beginning that throws us off so much. Going from "zero" knowledge/experience/ability to "a little" knowledge/experience/ability begets an inordinate boost in our confidence because wow, I can now do something I couldn't do before! And for some reason it can be really easy to let 'a little' knowledge go to our head.

In a way it is amazing. For both of the examples above--learning to play the guitar and working for an internet company--these things were so foreign to me and so far out of my wheelhouse that learning how to do them at all felt huge! There was certainly a part of me that deserved to feel proud of these accomplishments but we have to be careful--a little bit of knowledge/experience/ability can be somewhat dangerous. If not dangerous, at the very least we can end up feeling arrogant and entitled.


Which brings me to Mother's Day. I don't actually remember any details of my first official Mother's Day but what I do remember is that whatever my husband had done, it didn't feel like enough. I was sure there would be a bajillion flowers, endless chocolates, and one of those ginormous cards in the Hallmark store that no one ever actually buys. Maybe a parade in my honor. Baby PSP was not the easiest baby and clearly I deserved all the accolades and all the praise for doing this most difficult of all jobs: being a mother.

I know. My poor husband, you're all thinking right now. But chill out guys, remember this story is going to follow a pattern as stated above, and I've probably learned to be more humble about it so let's just keep going. Anyway, I don't remember exactly how I acted or what I said--I don't remember throwing a fit or anything or stomping around demanding I want a golden goose NOW daddy! but still, I felt entitled. To what exactly, I don't know... but I felt it.

But eventually I experienced that same magical shift. As I worked even harder, experienced my first threenager while also learning the special needs ropes and continued to grow and stretch in this roll of Mom, I saw things more clearly. I have no idea when this shift happened, I can't even pin point the year, but one Mother's Day I remember being woken up by my beautiful children and by my amazing husband with breakfast in bed and handmade cards, thinking, "This day is a sham! Why are we celebrating me? I am the lucky one here. They're the ones who made me a mother. They're the ones who bring joy, light and love to my life. They're the ones who even when they give me absolutely nothing, give me everything."

Every Mother's Day since then, as my kids do their best to be 'extra good' (another sham really) and as my husband makes all the meals and cleans all the dishes and as they do all these things to celebrate me, I can't help but think we've got it all backwards. I appreciate them showing their appreciation of me--don't get me wrong-- but in my heart I know that motherhood is not an accomplishment, it is a gift. I get to be a mother.


I get to do this. I am so lucky.

So my very best tip for a picture perfect Mother's day is gratitude.

Gratitude.
Gratitude. 
Gratitude.

The more gratitude in your heart, the more clearly you will see reality. Gratitude is the ultimate calibrator of life and the only way we'll get even a little close to picture perfect. 
Happy Mother's Day.


Now for a chance to win a $100 Visa gift card, how will you spend your Mother's Day this year?
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Friday, April 29, 2016

Special Needs Spotlight || Sarah


Life isn't always what you make it.  Sometimes life happens, and you are thrown into a world of crisis parenting and trying to keep your head above the water.  When my daughter, Sarah, was born three years ago with a rare genetic condition called Apert Syndrome, I certainly felt that way - that everything was out of my control and that I'd simply have to resign myself to what may come.  Then I realized that, despite the mysteries we all experience, we can and do have choices.  My attitude matters every day.  My thoughts and how I choose to live matters.  In choosing to find meaning and purpose and value in the messes of special needs parenting, I have chosen victory over victimhood.

***************

Miggy: Hi Jeannie, thank you so much for participating today and sharing your sweet daughter Sarah with us. Your daughter Sarah has Apert Syndrome, can you take me back to the day you knew your daughter would have special needs? Was this before birth during a routine ultrasound, shortly after birth or sometime later? And how long did it actually take to get her official diagnosis? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?


Jeannie: My husband, Ben, and I didn't know about Sarah's condition until she was born via c-section. It was a surreal moment to be lying on my back--unable to see Sarah--yet hearing her scream the typical newborn cry, feeling instantly relieved, then noticing something was wrong because the room fell eerily silent. I did have a normal pregnancy and three ultrasounds that never revealed anything, though I did opt out of any prenatal genetic testing.  I did this, because I didn't want to risk miscarriage, and I also knew it wouldn't make a difference about our choice to love and raise Sarah, despite any potential diagnoses.


We received an informal diagnosis the day she was born. The pediatrician at the hospital printed some information from the internet for us to review and said tentatively, "I think your daughter might have Apert Syndrome." We had no idea what this was. Ben and I were shocked and dismayed. For a brief period, we both entertained the notion that maybe she would just need a couple of surgeries to separate her mitten hands, and we could move on to have a "normal" life. Once Ben started googling "Apert Syndrome," we saw extreme cases with severe facial deformities, and I remember thinking, "Is this what Sarah is going to look like? I don't think I can handle this!" Ben and I cried together in the hospital. We didn't know if she would live or die or what our lives would look like from that point onward.


The official diagnosis came about a month following Sarah's birth, after we were referred to a geneticist. She ran several blood tests and showed us the results that confirmed Apert. We were told frankly that it was a "genetic fluke" that caused her syndrome--neither my husband nor I have Apert anywhere in our family history.


Today, three years later, I am in a much different place. Not only have I accepted her diagnosis, but I can see the gift in her syndrome. It's not that I'd wish for anyone to have Apert or anything else that requires potential social ostracizing or a lifetime of surgeries and specialists, but Sarah is a very transparent little girl. People see her facial differences first, but then they are greeted by her warmth and her love. Somehow, without realizing it, Sarah penetrates people's hearts. She reaches into a person's soul and leaves them with the gift of joy. While I don't view Sarah in terms of limitations of her syndrome, I cannot imagine her without it. Life has taken on profoundly new and deeper meaning for me and our family.


Miggy: Will you please educate my readers about Apert syndrome and how Sarah’s needs affect your day-to-day life?  


Jeannie: Without being clinical, Apert Syndrome is a rare genetic condition that affects the development of skull and facial bones, as well as the hands and feet.  It's called a form of 'craniosynostosis,' which means there are other syndromes where the plates in the skull are also prematurely fused.  It's estimated that between 1 in 80,000 to 1 in 250,000 live births result in Apert (stats vary widely). There are no stats on prognosis, life expectancy, or mortality rates.


People with Apert are visibly different. They have droopy eyes, a misshapen head, a small mouth and jaw with unusually shaped teeth, short arms, misshapen fingers and toes, and other conditions, such as cleft palate, speech impediments, heart murmurs, pulmonary issues, acne and bad cradle cap, etc. I could go on, but those are some of the basics. Apert must be monitored closely by several specialists, including a craniofacial, neuro- and orthopedic surgeon, physical/occupational (and sometimes speech) therapist, audiologist/ENT, dermatologist, cardiologist, pulmonologist, pediatric dentist/orthodontist/oral surgeon, ophthalmologist/optometrist, and a geneticist, to name several.


Daily life is somewhat typical. We do see specialists nearly every week, often out of town, which is very draining and exhausting for the family. Sarah has recently transitioned from our state's early childhood intervention program into special education preschool, where she continues to receive PT and OT on a weekly basis. We also take her to an independent agency for additional OT because of her hands and limited range of motion. Thankfully, we don't have any medical equipment or trachs, as many Apert families do. Sarah is pretty independent and very adaptable, with minor limitations.                                                   


Miggy: What are the biggest worries you face for Sarah?  Conversely, what are your hopes and dreams for Sarah?


Jeannie: You know, as a mom, my biggest fear is how older kids are going to respond to Sarah. We've already encountered some kids who gawk at her and laugh or make rude comments. At times, I handle this well, but at other times, the mama bear in me comes out, and I'm enraged. Usually I become angry when the child says something derogatory with a parent present, and the parent says nothing at all or shoos the kid away. Otherwise, I try to talk to the child myself and explain that Sarah looks different, and s/he probably hasn't seen anyone like Sarah before, but she is a nice girl who enjoy a lot of the same things they do.


I used to have some business cards that briefly explained Apert Syndrome, and I'd pass them out to parents when their kids would make comments. These were very well received and broke the ice for an honest conversation. When I ran out, I forgot to reorder! Now I'm reminded to do that.


My dreams for Sarah are vast. I don't have any expectations, other than for her to adapt into her community and become independent. Now that we've met other people with Apert who are adults and live independently, have college degrees, travel, are employed, some married, etc., we know this is very possible for Sarah. She shows no sign of cognitive impairment, which some kids with Apert do, so we are hopeful that she will integrate into her community well and possibly get married or have a family and a career one day.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?


Jeannie: Sarah's a pretty candid little girl, so one day she asked me, "Why do we have a face?" I thought this was so cute and ironic! I don't think Sarah is aware of her condition yet, but she has met other people with Apert ranging from infants to adults. I can't think of anything hilarious, but Sarah is not shy and has no problem talking to people.


Miggy: How can people best approach or respond to Sarah? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  


Jeannie: The only thing that hurts or is awkward is when parents respond to Sarah in fear.  Instead of approaching her (or me) with a smile, they rush off, as if they are embarrassed and uncomfortable. I realize this, because I was much like this before I had Sarah. But what I wish people would do (and some have) is just walk over with their child and ask, "Hey, my son/daughter noticed your little girl. Could we ask you some questions?" I am always relieved and happy to tell people about Sarah's condition. It's a rare thing, indeed, [when this happens], but I welcome it.


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to Sarah?


Jeannie: Felicity is a sensitive and protective older sister to Sarah. I have seen their friendship blossom, and it's beautiful. The most poignant part of Felicity's character development occurred about a year ago when she overheard a child laughing at Sarah and saying, "She has a scary face!" Felicity waltzed over to me, hands on her hips, and said, "My sister does NOT have a scary face!" I recognized this as a teaching moment, so I asked her, "Well, what can you say to someone if you hear them say Sarah has a scary face?" She shrugged, so I told her, "You can say, 'She's not scary, she's just different' and leave it at that."  Since that day, Felicity has said this a few times to other kids. She is learning that differences are beautiful gifts, not something to be afraid of or repulsed by.


Miggy: If you could say something to the mom who just starting on this journey of Apert Syndrome, what would you say?   What would you say to yourself if you could go back in time?    
Jeannie: I'd say to reach out early to other Apert families. My husband and I received no support or counseling. We had to find our own way. Fortunately, I am a proactive and determined person, so I searched for blogs and websites and Facebook groups that would give us some semblance of community. Facebook has two active Apert groups, Apert U.S.A. and Apert Syndrome Awareness. From these groups, I have met some amazing families who have become our friends, and I've posted questions when I'm not sure what decision to make about Sarah's care.  Everyone always has supportive, thoughtful, and insightful answers.


It's important to be proactive and advocate for your child. Don't cowtow to every specialist's suggestion, because they may or may not be right for your child. I've learned to research Apert on my own and be very vigilant in getting Sarah the best care available to her.



Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Sarah's mom?


Jeannie: Life must be enjoyed and lived to the fullest in the present moment. It's all we've been given, and it can pass us by in a flash. Life is cruel, but there are hidden blessings in every aspect of suffering and struggle. Some people may be indifferent or hurtful to those who are disabled, but many are kind beyond understanding. Having a child with a rare disease is humbling and an honor.

***************

Jeannie thank you so much for sharing your sweet family with us and especially you're precious Sarah. She is a doll! I think you described so well the pain of having a child being socially ostracized because of their differences when you said, "The only thing that hurts or is awkward is when parents respond to Sarah in fear.  Instead of approaching her (or me) with a smile, they rush off, as if they are embarrassed and uncomfortable." We have had similar situations--a couple that were heartbreakingly difficult. Like you, I know I also didn't know what to do or how to best handle these situations before I had Lamp, which is why it's so important for me to spread this message of inclusion. I didn't know any better, but now I do. And as Oprah always says, "When you know better, you do better." Thanks again Jeannie for participating today and please give your girls a big squeeze from me.

To see more of Jeannie and Sarah's story you can visit their website here and watch a video of their story here.

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!
XO,
Miggy

Wednesday, April 27, 2016

Bathroom Renovation Update


I bought a bath tub last weekend. An old cast iron claw foot tub--in fact the rusty, green number you see above. The enamel is chipped around the edges a bit, the paint is all peeled around the outside. It's exactly what I always dreamed of. We're going to get it fixed up of course--professionally re-enameled, painted on the outside--but actually purchasing the tub has made everything all the more real.

But phew! this has been quite a process. We're not doing the work ourselves and so finding the right people for the job (hopefully... knock-on-wood we don't end up on one of those our-contractor-screwed-us-over shows) has taken time, then setting up meetings, getting quotes back, more meetings, more quotes, shopping for materials and still waiting on some quotes before we can actually schedule the start date. But it's soon!

This is the first major renovation we've ever done. And we have always, always had really old, out of date bathrooms. And thankfully the bathrooms aren't "sorta nice, but not my style" they're bad. So, so bad. We're starting with the main bathroom--the one the girls use and also the ones guests use as well. It's a 2.5 bathroom home, so other than the master, this is it! And here are some before pictures to feast your eyes on:

See how there is a little hallway with closet doors on either side? We're going to be reconfiguring this whole space, pushing the bathroom all the way out to the main hall, eliminating this little entry way to the bathroom. We'll still have closets, but they will be accessed from the main hall as well.

And now behold...mid century meets country bumpkin. Blue mid century tile all around and then wood paneling across the top. I intentionally left the toilet paper on the floor just to accentuate the awfulness of this bathroom. And the brown towels and (ha I just noticed this!) the toilet paper roll sitting on the towel bar. A really bad before picture always makes for a great after picture.


And here is what I'm envisioning for this bathroom below. Modern brass fixtures, a mid century  style buffet turned vanity, vintage medicine cabinets (also in brass), clawfoot tub, white subway tile, white hex tile, brass sconces and a little greenery in there somewhere.

Bathroom remodel
Modernica garden planter / Pottery Barn Vintage Medicine Cabinet / Sample Color Swatch of Snow White 3x6 Glass Subway Tile for Kitchen... / SomerTile 10.5x11-inch Victorian Hex Glossy White Porcelain Mosaic... / West Elm sideboard / KOHLER Purist 8 in. 2-Handle Wall-Mount Low-Arc Bathroom Faucet Trim... / 10 Trendy Clawfoot Tubs Vintage, Bold Rustic / Cedar Moss

I know brass, white and black are very of the moment, but I also think it will wear well for years to come. I'm trying to convince myself that these styles are timeless (and I honestly think they are) but it seems inevitable that everything goes in and out of style eventually. When we first got married the neutral I was in love with was brown. I still like the color brown in general, especially when it comes to wood, but I have not bought anything brown for my home in probably since my second year of marriage. But I still think black and white is a pretty good way to go. And since I can't predict or control what I will or will not like in the future, I'm going to go ahead and go with what I like now.

Also, buying the clawfoot tub...I had this moment where I was like, "Am I allowed to do this? Am I allowed to get exactly what I like? For no other reason than I want to?" I've talked about this before but home decor is one of those things that I really love and enjoy, but I have a hard time pulling the trigger and really going for it all the way. Most of the rooms in my house have a few key things missing that I've been wanting for a while, but pulling the trigger and getting that last rug, or finishing the closets just feel...something. Extravagant maybe? Part of it is worrying about perception--I'm not an interior designer who am I to have a beautiful home? Do other people think I'm being too fancy, and thus shallow? The main part is just about my own insecurities with spending money and having what I want and feeling deserving...I'm sure I feel that way in other areas of my life, but nothing brings this feeling out in me more than when it comes to decorating my house. Anyone else relate? Thoughts? 

Monday, April 25, 2016

Eat: Best Kale Salad


Everyone has those recipes they get asked for time and time again...well believe it not, this kale salad is one of them. I know.... kale. But I swear on my Led Zeppelin III vinyl album cover that it's really, really good. Also, it's the type of recipe where you don't really need to measure everything out exactly... if you want more carrot, less carrot, fine. Just get the proportions on the liquid ingredients, garlic and ginger about right and you'll be good to go. I first saw this recipe years ago on a wonderful vegetarian blog I used to read (fresh365) but one day the blog disappeared and all the yummy recipes with it. Sad face. Luckily I had it printed out and saved all this time. So what better place to keep it stored than on the world wide web?



I love that this recipe has a host of simple fresh ingredients and some pantry stapes...so really, anytime I have kale around it's easy to whip out this salad. Sesame oil and sesame seeds might not be staples for everyone, but I use them enough to keep them around regularly. And I always have fresh ginger in the freezer, it keeps f o r e v e r. Also, when was the last time "massage" was an integral step in a recipe? Too long probably. Because kale leaves are so hearty, you're actually going to massage the liquids into the kale and let it sit for a while to sort of relax the leaves a bit. This is a great salad for picnics and get togethers because you can leave it out for quite a while without the kale going bad.


So there you go. You're new summer salad picnic staple.
Enjoy + happy Monday.


Sesame Kale Salad

Ingredients
1 large buch kale or about 4 cups
1 garlic clove, minced
2 tsp ginger, minced
3 tbls rice vinegar
1 tbls toasted sesame oil
1 tbls soy sauce
1 tbls olive oil
1 carrot, shredded
2 tbls minced red onion
1 tbls sesame seeds
parmesan cheese to taste (optional)

In a large bowl add the kale, garlic, ginger, rice vinegar, olive oil, sesame oil and soy sauce. with your hands, massage the kale leaves for 1-2 minutes, until the ingredients are well mixed. Add the red onion, carrot and sesame seeds, tossing well. Season to taste with salt and pepper. Let sit at least 20 minutes. If desired garnish with Parmesan cheese before serving.


Wednesday, April 20, 2016

Favorite Work Out Songs


This is my second post in my health and workout series. As I stated last month I'm on the final countdown to the big 4-0 this year and am doing a series of posts focused on health and working out. This is not about weight loss or achieving a "bikini body." After spending a year and a half with debilitating back pain and recently returning to pain-free living I have a new found love for my body and feel grateful for all it allows me to do. Honestly, working out and feeling the burn feels like such a privilege to me these days. The one goal is do have to be able to do 10 pull-ups by my 40th birthday. Thanks for following along!

As I said in my first post, these days I do a combination of yoga, work out videos and my own weight training workouts. I really only listen to music when doing my own workouts as the other two I follow while doing a video. When it comes to work out music I know everyone has a little different take on it. Overall it seems that most people want high energy and a good beat. That being said, I find that "a good beat" is sorta code for hip-hop/rap. Now you'll see plenty of hip-hop and rap on my play list, but for me a good beat doesn't only apply to those genres. I've got a wide range of songs that get me pumped up when I'm working out ranging from punk, to ska, to rap, to rock, and even indie.


But here's the other thing, I think we're all motivated by different things when we work out--some people like working out with a friend or a classroom setting as being around other people provides motivation, other people enjoy running while listening to books on tape, that's their motivation. But here's my thing... I have this bit of a rock star alter ego and so when I'm working out, I imagine myself on stage playing or singing the song. Either that or it has to be a song I love lip syncing to (which is often hip-hop or rap). I'm not making this up... I think it's just the bad-a factor of feeling like a rock star somehow translates into more of a bad-a workout mood. Funny right? But totally works for me. Which is also why not all of my songs are that fast, but they're motivating for me. So they work.

So here is a play list of some of my all-time favorite work out songs. It's hard to narrow it down to 10, but I tried to get a wide range of styles, with some being more recent and some being my tried and true, hopefully something on there will resonate with you as well.

1. Paradise City-- Guns 'n Roses (seriously, such a good starter song as there's the slow build up to full on crazy... I love this one)
2. Bad Girls-- MIA
3. Izzo--Jay-Z (cuss alert unless you get radio edit)
4. Stupid Kid--Alkaline Trio
5. Let Me Clear My Throat-- DJ Kool (GD alert) 
6. Dog Days are Over--Florence and the Machine
7. Giants--Bear Hands
8. OPP--Naughty By Nature (as a white, monogamous, Mormon woman I live the irony of lip syncing this song... probably my all time favorite song to lip sync.) 
9. Healthy Body, Sick Mind--Operation Ivy
10. To Kingdom Come--Passion Pit

Here's a link to my play list on Spotify if you want to check it out!


Ok your turn, gimme all your best work out songs! Also, what motivates you when you're working out? Any other wanna be rock stars out there? 

Monday, April 18, 2016

Here Comes The Sun


Finally, some sun coupled with some heat this past weekend. Our winter was so, so mild but our spring has been freezing. My least favorite weather--if we're keeping track--is sunny but freezing. Especially in the spring. It's straight up deceptive Mother Nature, that's what it is.

This is going to be a post filled with a jumble of thoughts and pictures. A summary of what we've been up to lately and some other things that have been on my mind. Jumbled, random stuff feels super appropriate on a Monday to me.

First, someone (finally) got a new foot! OK brace, but it has a foot so cool right? It's an interesting little device as it's an orthotic and prosthetic combined, not entirely one or the other. Lamp has been using an brace for several years to practise walking with as they help stabilize her smaller leg and also make up for the length discrepancy. But the great thing about this new brace is that there are no straps or extra do-hickies to fasten, she can just slide it on and go. Well, eventually... but that's the idea. I posted a video of her walking with her new brace on IG last week. It's pretty awesome and you should check it out if you have a minute. We've come a long way baby...


Saturday we headed to an old favorite of ours in The Queen city, Happen Inc. We used to go to Happen back when we lived here the first time (Cincy 1.0) and haven't been back since until this past Saturday, but I don't know why because I love this place!

Happen, Inc. in an art center where kids and families can go and have fun, bonding experience making art. Usually you're making ceramics--meaning the kids are using real clay, glazing their pieces and then the pieces get fired in the kiln. Because of the whole process you don't get your pieces back for a couple of weeks, but how amazing is that? I love that my kids are getting exposure to a medium that they wouldn't otherwise be exposed to as most of us don't have a kiln in the backyard. And get this, it's FREE. You don't sign up before-hand, there's not even a set class schedule, but rather it's more of an open studio (usually--check the calendar) where you come and someone runs you through the technique and then you get to work! I have a feeling we're going to be here a lot more often.


    classic RBF

Also, Happen, Inc. has really expanded in the past few years and they now have a toy lab where you can create a new toy from old toy parts (remember that crazy kid from the first Toy Story movie... like that but hopefully less creepy?), they also boast 3 community gardens, a kids film critics club, and so many more programs! I'm really excited to check out more of their amazing offerings. Kids, families and communities really benefit from places like this.

Saturday evening, aka post nap time, we headed down to Washington Park where it felt like a full on Summer day. We were sure the splash pad probably wasn't running just yet, but we grabbed our suits just in case. I love it when just in case pays off. The first really sunny and warm day always feels like the entire city is in a good mood. There is so much to look forward to and every one can just relax a little bit more.


And I can't even tell you how proud I am of Lamp on days like this, how she just charges out into the world with her head held high enjoying life and soaking up the sun despite a lot of pointing, staring, and questioning. I always hover close by, never knowing exactly when to jump in or when to leave her to handle her own business--it's not an exact science. And make no mistake she knows what's going on and sometimes the pointing/starting/questioning does get to her--she comes back and reports to me often about kids who don't talk to her but who are point at her arm or kids who keep asking about her limb differences--she knows what's up. But that girl lives her life unapologetically and does exactly what makes her heart feel happy. Which makes my heart feel happy.  I hope she always lives her life with that kind of openness, self assurance and joy.


I always say she's the bravest girl I know and it's true in so many ways.



The girls played, we (mostly) sat and watched. We even braved a family dinner in the heart of OTR on a Friday night and we had a great time. This picture I snapped at dinner is a good summary of our weekend--a little sassy, a little smiley, some giggles, a lot of light and love.

Spring, I'm picking up what you're throwing down... if this was a little preview of summer I'm in.
I'm all in.

Friday, April 08, 2016

Special Needs Spotlight || Liesel and Wells

Hi, my name is Laura.  My husband and I have 6 children: Liesel (17), Gwyneth (17), Madeline (14), Gretchen (12), Pace (8), Wells (5).  We are currently living in Malaysia, which has been quite a fun adventure, and also very, very hot!  As a family, we enjoy swimming, listening to music, and traveling to new places. We will be moving back to the U.S. this summer, after three years in Malaysia, and I have to say I am very much looking forward to having a Costco to shop at!  I will miss the sense of adventure that living in Malaysia brings, though.  I hope you enjoy learning a bit more about our family. Liesel was born with several non-genetic birth defects, and Wells is autistic, so our family has gotten to experience many different aspects of the special-needs arena!  


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Miggy: Hi Laura! Thank you so much for being here today and sharing your special needs journey with me and my readers. You have two children with two very different special needs--your daughter has limb differences which of course fall under the umbrella of physical disabilities and your son has autism. Lets start at the beginning with each child....since your daughter was born first, can you take me back to the day you found out about her limb differences? Do you remember how you felt then? Can you compare those first thoughts and feelings with how you feel now?


Laura: When I was about 24 weeks pregnant with Liesel and Gwyneth (they are genetically identical twins) I started having complications. In a very in-depth ultrasound, the doctors discovered that twin A (Liesel) was really struggling. Her right arm was visibly smaller and missing some fingers, and one of her legs appeared to be short as well. It was hard to get a good enough look to really tell what was going on. I was having pre-term labor, low amniotic fluid, and bleeding, so the doctors were really concerned that the girls would be born before 28 weeks. Liesel's additional problems made it even scarier. I remember being so, so sad and scared!!! Mostly, I was just concerned that the girls be born healthy, but I was also really worried about Liesel's arm/leg situation. I was on strict bed rest and would lay on the couch all day thinking and wondering and worrying. I was so overwhelmed that I remember thinking I might never smile again! By the time Liesel and Gwyneth were born I was just so happy that they were alive, but still really worried about how Liesel's life would be (physically, socially, emotionally). The first time I held her and unwrapped her blanket so I could see her arm was a very emotional moment for me. I was so concerned about her future! Fast-forward to now, and Liesel is a beautiful 17-year-old who is on the swim team and rock climbs and leads a totally normal life! I wish I could have seen how great her life would be. In fact, she's said lots of times that she wouldn't wish for two arms. I NEVER would have believed she or I would feel that way back when I was pregnant with her.


Miggy: Years later you have a son, at what point did you start to see some red flags in his behavior and when were you able to get a diagnosis? Again, can you compare those first thoughts and feelings with how you feel now? Also, were there additional thoughts about having now 2 children with very different needs?


Laura: My son Wells (short for Maxwell) started showing signs of failure-to-thrive when he was about 4 months old. Feeding him became a full-time job. He was delayed in reaching his physical milestones, as well. He started early intervention therapy (occupational therapy and speech/feeding) when he was about 10 months old. For a long time, we kept thinking he was just a little "behind" and that he would catch up soon. We moved to Malaysia from the U.S. when he was almost 3 years old. I started feeling like there was a bigger problem than just being "behind". Wells was still functioning at an 18-month-old level. Seeing pediatric specialists is a bit harder here than in the U.S. but we were able to find a great occupational therapist and speech therapist and find a preschool he could go to. His diagnosis was still "global developmental delays" with possible ADHD as well. When he was 4 we started talking about the real possibility that Wells had autistic spectrum disorder, but he doesn't have some of the characteristics of a "typical" (ha!) autistic child, so his doctors were reluctant to diagnosis him beyond just having developmental delays. Just this past January, we flew to Singapore to visit with specialists there. He was tested using several assessment tests and came out clearly autistic in all of them. I honestly didn't really have a reaction then--I had known for a long time that whatever Wells was dealing with was major, and I was actually relieved that there was finally a diagnosis and something I could tell people! It hit me a few days later, though, and I did go through a grieving process. Wells is 5 right now, and will start kindergarten this next year (in the U.S.--we are moving back in June), and I have real concerns about how it is going to go, and about the rest of his life, too (will he live with us forever, etc.). My husband and I laugh that we thought having twins for our first kids and then having Liesel's challenges was our "trial in life"! Nope!




Miggy: I know that each child and their particular diagnosis and needs are all very unique, can you talk to us about your children's and explain how those needs affect their and your family's day-to-day life?


Laura: Besides Liesel's arm situation (which is an ulnar deficiency--meaning her arm ends basically at her elbow, with two small fingers at the end), she had hip dysplasia, a leg-length/size discrepancy, tethered cord syndrome, scoliosis, and bladder issues. She had her first surgery at age one to un-fuse the two fingers on her right arm. They can now move independently from each other, which has been really helpful for her. She's had 5 or 6 bladder surgeries, and a back surgery. Her worst surgery was when she was 11 years old and had her leg lengthened with an external fixator (her femur bone was broken and stretched apart over a few months and then allowed to grow back together). It was so awful! I hope I never have to do anything harder than watching Liesel go through that! (Knock on wood, right?!) I know it's the hardest thing Liesel's ever done, too. It's a really painful surgery and the months while the bone is stretched apart is full of PAINFUL therapy three times a day. I can hardly even think about it. But anyway, other than the times when she's been undergoing/recovering from surgery, her life has been pretty much normal. She's a twin, and they've been able to do almost the same things from day one. Liesel just gets creative and figures things out!


Wells affects our lives pretty much every second of every day!!! He is such a crazy lovable little stinker. We have to factor his needs into everything we do. Routines are really important to him, and he doesn't regulate emotions very well, so being out in public is tricky. Luckily, now he tolerates wearing headphones so he can listen to music or work on his kindle while we are out and about (like at church--holy cow, church used to be hard!), which helps him not be so overwhelmed. He still acts very much like a 3 year old. (He's 5 1/2). He's verbal, which is great, but he uses words in a funny way--about 70% of what he says is quoted from a book or a movie. He also doesn't have an "off switch" or a "quiet button", which keeps things exciting. He is getting better at actually having conversations, which is such a nice change. He is also physically behind and quite clumsy and also completely unaware of danger. He would love nothing better than to climb over our 6th-floor balconies and "fly". All the knives in the house have to be hidden because he uses them as swords. He also bumps his head really hard on purpose when he gets upset so we have dents in our fridge from his head! In spite of all that, he is actually a very happy kid most of the time. Anything that comes out of his mouth that is not part of tantrum is absolutely delightful. He LOVES music and swinging and spends several hours a day in the playroom listening to music and singing while he swings on his swing. My other children are completely in love with him, which I view as one of the best blessings in my life.


Miggy: What are the biggest worries you face for your children? On the flip side, what are your hopes and dreams for them as well?


Laura: With Liesel, there are still concerns about her bladder and back, so I hope we can resolve those before too long! Pregnancy might be hard on her because of her hip/back/bladder situations, but we don't have to cross that bridge for quite a while! Other than that, I don't really have any worries--she's proved herself to be completely capable of doing anything she wants to do!


I am still worried about so many things for Wells, and have had to learn to just take it a day at a time. Most days are happy and good, so I try to not worry about all the many what-ifs. I really hope we can figure out something that will work for him school-wise. I hope he stays happy and carefree like he is right now. He really believes that everybody loves him, and I hope he can hold onto that feeling for just a while longer. Long-term, I hope he can eventually be stable enough to live on his own, but I can't let myself get too worried about that!



Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?


Laura: Laughing is the only way we have gotten through so many things. Lots of our jokes probably seem wholly inappropriate to outsiders, but oh well. Liesel has lots of big scars on her leg from her lengthening surgery and we like to pretend that they're shark bites, and that the shark bit off half her arm, too. Young boys love her arm because it looks like a t-rex arm, so we get her all sorts of t-rex paraphernalia, like t-shirts with a t-rex doing push ups. We think all the t-rex jokes about short arms are pretty funny (She doesn't get offended when she's excused from doing push-ups because t-rexes can't do them either. But she can hold a one-arm plank for a long time!). Liesel also named her hand "baby hand" when she was about two years old, and declared that it was a "he." "He" is kind of like a separate person in our family. Also, people absolutely love to hold her hand. It feels so nice to hold and is the perfect size. Our other kids have fought over who gets to hold "baby hand." Wells would hold onto it for hours if her could sit still for that long.


We have absolutely survived our lives with Wells by laughing. I notice all the funny things he does during the day and then I make a report to the rest of the family at night. It keeps us loving him even when he is such a stinker. He quotes books and movies all the time, and puts them into real-life situations in the most humorous ways. We all go around quoting him, now. We have to ride in an elevator several times a day here, and he often has everybody in the elevator laughing by the time we get to our floor. I have to see the humor in my life with him or else I would just cry. It's either laugh or cry with him, and I choose to laugh (usually).


Miggy: You are in the unique position of having one child with a visible disability and one child with a non-visible disability. Can you talk a little about the unique challenges that come from having children with both a visible and non-visible disability? Do you find one more challenging than the other, or would you say the challenges are simply different? How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?


Laura: Liesel's disability is one of the first things people notice about her (besides that she's an identical twin--her disability is not a genetic one, and she and Gwyneth are genetically identical, so they look exactly alike aside from some missing fingers and a few scars). She does get lots of stares and you can tell people are wondering about it. Sometimes if she can tell people are looking, she'll wiggle her fingers at them just for fun. If people ask, she is very up-front about explaining it to them, and doesn't really get too embarrassed. I practiced really hard when she was a baby to just explain things in a calm, nice voice to people who asked or stared, so that when she could answer for herself, it was no big deal. For anybody who knows her well, her disability is a non-issue because she is so "normal" (I hate that word, but you know what I mean) in every other way. It's nice that Liesel is so open about her experiences. In fact, she even gave a TED-X talk about disabilities and how they're just differences.


Wells is kind of the opposite of Liesel, in that he looks like a normal 5-year-old boy, but doesn't act like one. In some ways this is harder because people expect him to act normal and can be surprised and frustrated when he acts like a 3-year-old instead (or even a 2-year-old). The best thing for Wells in public is for people to just leave him alone, which people don't very often do. For example, somebody asking Wells for a high-five, or asking him how old he is can really set him off. With Liesel, everybody is pleasantly surprised at how much she can do, and with Wells, sometimes they are unpleasantly surprised. That sounds awful, I know, but really as soon as Wells quotes them a whole book or a movie or busts out his dance moves and starts singing, they are usually on his team again. I feel like I have to do way more explaining of Wells' behaviors than I ever had to do with Liesel. Also, with Wells a lot of people will try to make me feel better (?) by telling me some way their child is behind, too, so they "know how I feel." I know they mean well, but it's pretty hard to know they really have no idea what life is like with an autistic child. I also get a lot of "helpful" suggestions of things to try with Wells. One person asked me if I had ever tried to teach him how to whisper. Um yes, I have, thank you very much!


Miggy: If you could say something to the mom who just starting on this journey of special needs--either with autism or limb differences--what would you say? What would you say to yourself if you could go back in time?


Laura: I would let other moms (and myself!) know that we can do this! We love our kids more than anyone else, so there is no one better for them than us!!! And that things usually turn out better than we think they will, so just keep on hoping! Also, that it is absolutely amazing to watch kids overcome hard things. My kids are way better at doing hard things than I am, for sure! Also, that I think it's normal to grieve for something, and then become okay with it for awhile, and then grieve again, and then be okay again, over and over! That was a lot of random things!



Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?


Laura: I have learned to both give up on the expectation of "normal", and also do everything I can to give my kids the best hope they have of being "normal"--an oxymoron, for sure! To clarify, I have learned to stop caring what other people think is normal, as far as looks (Liesel) and behavior (Wells) and focus on what feels right and good for us. We talked about getting a prosthetic arm for Liesel when she was a baby, because that seemed sort of expected of us, but we (along with our doctors) decided that Liesel used her right arm so well as-is that we didn't want to mess with that, so we never got her an arm. With Wells I learn every day not to care what other people think about my parenting skills--a lesson Wells helps me relearn over and over again (today it was with a 20-minute very loud, very public tantrum over a bite of applesauce). I have learned to really cherish the smallest amounts of improvement and not worry too much about the setbacks. For me, it is all about the balance between expecting and wanting and working for the best possible outcome, and being willing to be happy when it turns out to be different than I thought it would be.

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Laura, thank you so much! You're family is beautiful and I love how your children have helped you 
not care about what other people think when it comes to "normal." I relate so much to loving our 
"normal" and how it is so very different from what most people's normal looks like. Also I LOVE the inside jokes your family embraces and how to most people they are probably totally inappropriate. 
The t-rex arm is brilliant! And when you said with Wells you either laugh or cry, so you prefer to 
laugh. That really is the best way to go through life isn't it? And lastly your advice to yourself and 
other moms is spot-on. We DO love our kids more than anyone else so, yes we can do this! Thanks
again and big internet hugs to you and your beautiful family. Also, amazing Ted talk Liesel! I listenedwhile putting this spotlight together and you did a fantastic job!

If you or anyone you know would like to participate in the Special Needs Spotlight please email me 
at thislittlemiggy at gmail dot com. I know there are a few of you that I haven't yet responded to--I 
ask for your forgiveness and patience! I'm a one woman show over here, but I will get to you! 
Promise.

Have a great weekend!
XO,
Miggy