Friday, June 23, 2017

Special Needs Spotlight || Noah

Hi, I’m Cecile and I suppose our story begins with my high school sweetheart, Keith, who I went on to marry a year after college. After we began our careers we ran what we thought was your typical course of living: get married, travel, buy our first home, and start a family. But as I was pregnant with our first born, Noah Bella, we discovered our lives from that point on would be anything but typical. She was born with Heterotaxy Syndrome and complex congenital heart disease. Despite it all, we were blessed with the most beautiful child we’d ever seen. The joy she gave us in watching her grow into a playful, inquisitive, and loving human being was truly a gift. Our lives changed as Noah passed away soon after her 13thbirthday due to complications in recovery from a procedure. Her 13 years with us were the most fulfilling years of our lives, which also included the welcoming of her baby brother into this world. Noah went to heaven on January 3, 2017 just two months prior to Henry’s arrival.

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Miggy: Cecile thank you so much for being here today and for sharing your sweet Noah and for raising awareness for congenital heart disease. Noah passed away recently due to complications from a procedure. I am so sorry, and I cannot imagine the depth of your loss. I hope that by sharing her story and spreading more awareness today we can continue to honor your beautiful and brave Noah who was such a light to so many. Let's start at the beginning, Noah was born with a congenital heart defect. When did you first find out and do you remember how you felt? Did those feelings change over time--if so, how?


Cecile: We were very fortunate to find out at 20 weeks gestation. A previous ultrasound had indicated a possible malformation of her skull so we were referred to a perinatologist to rule it out. I’ll always remember this doctor giving us the news, seemingly all in one breath. “Congratulations, you’re going to have a baby girl… her cranium measures normal, …but there seems to be another problem.” Our mothers, who had accompanied us to this appointment, were immediately asked to step out of the room so our doctor could give us the details in private. The 15-minute appointment soon turned into an arduous three-hour long sonogram where he discovered that all of our daughter’s organs were in reverse with the biggest complication being her heart. I’ve never felt so much fear consume me. I immediately fell into guilt, anguish, and overall fear for her survival. It was a very lonely place to be. Keith and I didn’t know anything about CHD nor did we know anyone with this lifelong condition. But with a lot of education from our doctors, and the support given to us by our family and friends, we were able to cope and learn to live with the disease as unforgiving as it is. Giving Noah the best life possible was our goal from day one.


Miggy: I know that all medical conditions vary from person to person, can you tell us about Noah's specific condition and how it affected her and your family over the years?

Cecile: Noah was born with Heterotaxy Syndrome with Dextrocardia and complex single ventricle heart disease. Heterotaxy Syndrome is a very rare birth defect, affecting 4 in every 1 million babies born. It involves the heart and other organs in the body to be arranged in abnormal places in the chest and abdomen. In Noah’s case, she was born with her heart on the right side (Dextrocardia), without a spleen, a midline liver and with two right lobe lungs. Her other organs were an exact mirror of a normal anatomy and functioned properly. Her heart carried the primary complication of having a single ventricle stemmed from the defect DORV or Double Outlet Right Ventricle where the pulmonary artery and the aorta—the heart’s two major arteries—both connect to the right ventricle, thus carrying poor oxygenated blood (blue blood) back to the body. With this defect, there is no wall that separates the two ventricles, so rich oxygenated blood (red blood) mixes with the blue blood and a lower oxygen saturation in the body is the result. She underwent four open heart surgeries by the age of five and several cath procedures throughout her life.

To properly take care of Noah, I left my full-time job as a graphic designer and worked part-time from home. Every surgery and cardiac procedure was life threatening and did not “fix” her. Surgical complications and sensitivity to anesthesia made her recoveries difficult, but we were able to overcome those obstacles. We were very fortunate for Noah to experience a fairly normal childhood, attending public school and participating in activities all while considering her physical limitations. She remained a constant source of positivity throughout and never let her heart condition take over. As we approached her tween years, she was faced with new complications that began to interfere with her ability to go into school so we pulled her out and enrolled her into a home school program. But she continued to keep a positive outlook on life and thrived academically. Despite the many ups and downs we always tried to keep focus on the present, knowing things could always be worse.

Tuesday, June 20, 2017

Packing for Paris


I've been working on a recap post for our trip to Paris, but I thought I'd do a quick Packing for Paris post. I don't know about you but when I get ready for a trip it's a little like getting ready for photoshoot--uh, that's exactly what it's like because Mama Mia here wants to look good in her travel photos! Ha! Before a big trip I get my nails done, make sure my hair is freshly dyed and bangs trimmed if needed and I usually get a spray tan as well. Naturally I also want my outfits to be cute + chic, but also comfortable and easy as well. I think everyone enjoys looking and feeling their best--even when they travel.

Packing for Paris


For this trip in particular I was all about the basics--lots of denim + simple shirts--with interesting accessories. I actually ended up feeling really great about my outfit choices and wanted to share some looks, tips and sources with you. (note: while I sometimes use affiliate links, none of the links below are affiliate. Meaning, I'm not getting paid for anything you click on below--Just sharing some of my favorite things!) Here's the rundown below:

Friday, June 16, 2017

Special Needs Spotlight || Jaxon and Edison

This Little Miggy || Jaxon and Edison
Hi, my name is Renee Williams. My husband, Adam and I have two young boys Jaxon (7) and Edison (4) who share an undiagnosed genetic condition that causes them to have Global Developmental Delays. Jaxon and Edison are full of life, they are silly and loads of fun! Our life is incredibly busy and our boys certainly keep us on our toes! We are so blessed to be lucky enough to be raising these two amazing little boys. I never could have imagined this life but now that we are here, I could not see it any other way.

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Miggy: Welcome Renee and thank you so much for being here today and sharing your beautiful family with us. Your first son was born prematurely and it was assumed that when he was showing signs of developmental delays that it was due to his prematurity. However when your second son was born things took a turn. Can you walk us through that time period--what happened and at what point did you learn that both of your sons were globally delayed? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?


Renee: When Edison was first born, everything went well. It was a very typical pregnancy with no complications, easy planned c-section birth. He nursed well immediately and we brought him home from the hospital with no concerns regarding his development. As Edison got bigger, I started to worry that he also was not progressing as he should be and started to wonder if there was something more to my concerns. When he was about a year old, the Specialists were in agreement that indeed Edison was displaying delays and that the boys likely shared a genetic reason for their delays rather that what was initially thought with regards to Jaxon.

Though this was difficult news, it was actually easier the second time around because we had experience raising a child with special needs. By this point, it was not so much the fact that Edison had special needs that scared me but more so the notion that now we would be raising two boys with special needs.

My feelings now are this: Our life is never dull, we face challenges every day that many people couldn't imagine. However, I cannot imagine it any other way. Our boys are so fun! They do many things that other children do like horseback riding, downhill skiing, skating and bike riding. They have many firsts and in fact I appreciate these firsts on a different level than many people might. They are children first and though raising them looks and feels different than it does for many, we are still just raising our boys!


Miggy: At this point you don't have a diagnosis, so can you explain your children's differences and how they affect your day-to-day life?

Renee: Both boys have Global Developmental Disabilities and therefore have significant delays in all areas of their development. Jaxon uses a wheelchair primarily for mobility and is non verbal. He also relies on a feeding tube for nourishment. Edison walks short distances (toddler walk), relies on wheelchair for long distances and in also non verbal. He loves to eat though! Both boys are able to communicate using various signs, gestures and augmentative communication devices.

Tuesday, June 13, 2017

Paint Your Clothes || Lyrical T's

This Little Miggy || DIY Lyrical T's
I've decided to start a new series I'm really excited about called Paint Your Clothes. When it comes to crafty stuff I almost always find a way to mix paint and fabric. Forever ago I did a cool monoprint fabric DIY for DesignMom. My feather printed baby blanket stamped with a sweet potato still ranks as one of my most popular posts of all time. And most recently I did a c!ao t-shirt for myself and the instructions for today's post are going to be very similar.

I've been wanting to do some lyrical t-shirts for the kids for quite a while. Who doesn't love a good song lyric? I ended up doing two shirts with song lyrics and one with a vintage font and the year 1977. I choose a very 70's looking font for 1977, which also happens to be my birth year. Lamp likes this shirt as she says it reminds her of me. Awww. I think this would be cool with another year and a font that represented that era.

These are really glorified freezer paper stencils that are a little more pristine with the help of a Silhouette cutting machine. If you have a silhouette or similar machine you can whip one of these out in no time! If you don't have a silhouette... well you should buy one.  I use mine so often! It's a great investment. (Not a sponsored post!) Back to the shirts, you can do this with any font or even an image you see online. Here we go:

Supplies:
Silhouette Cutting Machine or a sharp exacto knife and cutting matte
White t-shirt (mine was from Target)
Freezer paper
Iron
Fabric/craft paint (I use Martha Stewart's craft paint) + Brush

Friday, June 09, 2017

Special Needs Spotlight || Charlie

Hi, I'm Barb. I am married to John and we have three kids; Charlie, who just turned 8, George who is 5 1/2 and Bonnie who is almost 3. Charlie has high functioning autism, which we have learned is just a part of the way he experiences the world. Autism is not rare, especially in Utah where we live. Nationally, 1 in 68 children are estimated to have Autism Spectrum Disorder- in Utah it's more like 1 in 58. 

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Miggy: Hi Barb! Thanks for being here today and sharing your family and especially your son Charlie and your family’s journey with Autism. First, can you take me back to the day you knew something wasn't quite right with your Charlie? How long did it take you to get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Barb: Charlie is our first child, so everything about being a parent was new and joyful and also slightly terrifying. :) I remember when he was around a year old that he could play by himself with his toys for an hour, and I found that hyper focus kind of odd. I asked my pediatrician if it was possible that he had autism and our doctor said he didn't see anything concerning.

Charlie was a happy kid and we were so happy being his parents. He did have some problems with hitting other children, and he wasn't a big talker. We didn't ever see a big regression or loss of language with him, which can be a sign of autism in young children. He was just our Charlie.

By the time he was ready to go to preschool at age 3.5, I was a little apprehensive that he wasn't ready socially. Once I saw him in a classroom with other kids his age, I could tell immediately how far behind them he was developmentally. He didn't want to engage in circle time or play with peers, he wasn't talking as well as the other kids, and he tended to hit and run away. I sat in our preschool director's office and sobbed to her that I didn't know where to turn for help. She was so kind and warm and was able to refer us to The Children's Center, a mental health practice in Salt Lake City that specializes in children with autism. They sent a clinician to observe Charlie in his preschool class and recommended that we pursue further testing. Because he was so young, he didn't receive a diagnosis officially until a couple of years later. Technically, he was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) and anxiety, as well as a moderate speech and receptive language delay.

I remember feeling a lot of grief and worry and uncertainty, and an unwillingness to talk about what was going on. Our families and close friends knew we were working through some things, but since Charlie's diagnosis was still kind of up in the air, I was really reluctant to use the word "autism" for a long time. I think I had to confront my own bias and stigma associated with that word before I could talk to other people about it. I was so worried about labeling Charlie and that in doing so we would limit him or people would pre-judge him.

However, what we found as we went along is that the more open we were with people, the more grace and patience they had with Charlie. We saw a willingness to give him the benefit of the doubt and extra consideration to do things a little differently. I remember the feeling of grief and fear from the beginning so clearly, but I don't have those feelings now. Charlie's strengths greatly outweigh his challenges and we are just living our lives in our version of normal.

Wednesday, June 07, 2017

The Other Side of Fear: Tips For Traveling as a Special Needs Family

This post is sponsored be Alaska Airlines. I'm so excited to be partnering with Alaska Airlines this year as we've got some exciting things planned. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. As always, all opinions are my own.

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Fear to love. That's the journey of a special needs parent.

For many of us our journey begins with a horrible ultrasound appointment, or perhaps a sinking feeling in our stomach when we see a red flag with one of our children, or a diagnosis from a doctor. In each case we're usually being told that something is wrong with our child.

Wrong. As in, not right. As in, different from the norm. As in, strange and unusual. Maybe physically, maybe intellectually, maybe both.

And wrong, different, strange and unusual are causes for fear.

I remember those early ultrasound appointments with Lamp. I remember medical descriptions and a lack of answers and potential outcomes and it was a really, really scary place to be. And while I know I can't speak for every special needs family out there, I've done enough interviews by now to know that for many of us this journey starts in a place of blinding fear. The fear that whispers wrong, burden, other, trial, more than you can handle. 

And for me it was a re-awakening of sorts to remember that love is a strength, a resource all its own. Love was less of a voice and more of an enabling power that said:
Different is not wrong. She is right.
Love is never a burden.
She is not other, she is yours.
She is a blessing.
YOU have got this.
But facing our fears, whether it's in the context of special needs parenting or in the greater context of life, isn’t a one time event. While I no longer fear limb differences, disability, wheelchairs, or accessible parking there are new fears to face all the time.

Monday, June 05, 2017

Summertime and the Living's easy


Miggy's Summer survival guide:

1. Good tunes.
2. Flying by the seat of our pants.

You're welcome.

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Memorial Day started our summer off right and I'm thinking it's all because of our amazing lack of  planning. My husband had just gotten back in town Sunday afternoon, a couple of the girls had been sick, so we knew it would be low key.

"Maybe we should go out for brunch tomorrow." One of us said.
"Yeah, that sounds good." The other one said.

We went to a new-to-us brunch spot and let it be known that even though I am usually the pickiest selector of restaurants in our marriage, when it comes to breakfast food the husband morphs into a bonafide food critic and very few restaurants make the grade. We had our brunch place in San Antonio. We had our favorite place for waffles in New York. And I'm not sure he's entirely convinced of this new place (and I hope I'm not jumping the gun) but this past weekend we may have found our brunch spot in Cincinnati. It only took us 3 years. If it matters, the food and decor get two thumbs up from me. (p.s. It doesn't matter.)

After brunch we decided to head straight downtown to a favorite park. We didn't pack an extra bag and didn't have any supplies on hand, but as the kids get a little older, the easier it is to wing it. So we winged it. Wung it? We tried to keep the little ones dresses on them for a while, but eventually we just took them off and let them splash around the water in their undies. Heaven knows you can't do that forever, might as well enjoy it while you can.

 On the way home we stopped at the store where I ran in real quick for some hamburger, buns, corn on the cobb, watermelon and peach cobbler stuff. We went home, had a nice quiet time and then set up the waterslide in the back yard and BBQ'd the rest of the day away. The day ended with showers for the littles with some beautiful light streaming in.