Friday, February 24, 2017

Special Needs Spotlight || Koko

Holly and Joe are parents to Kokoro, who is a cheeky, happy, musical 18-month-old with a great sense of humour. Kokoro, or Koko, has CHARGE syndrome, which is one of those unexplained spontaneous genetic mutations that occur at conception and result in a range of health issues. For Koko, this means hearing and vision impairment, heart defects and a range of other issues including low muscle tone and missing semi-circular canals which greatly impact her balance. (For more info on CHARGE check out the CHARGE Association

Miggy: Welcome Holly! I'm so happy to be featuring you and your sweet family today, especially your little Koko. (That name! I love it.) First, can you take me back to the day you knew your daughter would have special needs? Was it during pregnancy, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Holly: The first time that there was any mention of there being possible issues with Koko's health was during our 20 week scan. During the 13 week scan, I had been labeled as "low risk" and I now look back on the way I approached the 20 weeks scan as incredibly naive. We were expecting some cute pictures and to hear our baby's heart beat.

Instead, we were told that there were some "structural issues" with our baby’s heart and brain by the technician and then had to wait 8 hours until the supervising doctor was available to give us more information. When he did he basically presented the information as if there was no alternative but termination and my rather hysterical reaction thankfully encouraged him to hand us over to a team of incredible midwives and doctors who specialize in "at risk" pregnancies. However, as it was Friday afternoon no one was around, so we were sent home for a rather agonizing weekend.

Once we begun further investigations and research it became clear that things were not so black and white, and over the pregnancy, it began to appear that our baby's brain was in fact a variant of normal. However, she did in fact have heart issues. Additionally, we were told that as there were a couple of issues detected, there was an increased possibility that she could have a genetic issue.

As we aren't religious, we didn't have a go-to stance on how we would react in this situation and really hadn't considered it as a possibility. But over time and lots of chats, both my husband Joe and I felt that this baby was supposed to be born and that between us and our support network, we would be able to provide a loving and happy home for her. Her diagnosis of CHARGE unfolded in the weeks after her birth, and initially felt so devastating I wondered at times if I had subjected her to a life of suffering for my own selfish reasons. These days, most days, it is pretty clear that she is a happy kid who enjoys her life.

Miggy: Most conditions have quite a spectrum, therefore can you educate us about Koko's condition and explain how her needs present specifically? Also, how do her needs affect your day-to-day life?

Holly: The biggest issues have been with Koko's heart, which required surgery at days old and she will face further surgeries. As her lungs are wet due to her condition, she gets respiratory illnesses frequently and has a base load difficulty breathing. This means she gets sick a lot and every time she gets sick it’s fairly, majorly scary. That said, it has improved a lot over time.

The next biggest thing is her sight and hearing loss which obviously impact the way she experiences life and as a result we have a lot of early intervention appointments. Due to her gross motor difficulties she doesn't crawl or walk yet, and she can be very needy and need a ton of emotional regulation from me, so it is a little like having a much younger baby (think 3-6 month old), she still wants to be held 90% of the day - which can be both lovely and totally overwhelming and exhausting depending on my mood/tiredness.

Miggy: What are the biggest worries you face for Koko? On the flip side, what are your hopes and dreams for her?

Holly: The reality with CHARGE is that the mortality rate is very high, 1 in 6 kids with CHARGE don't make it past their 5th birthday. Aside from that (like that's not enough) my biggest fear is other people; I worry that there is not enough compassion and acceptance in the world and if my daughter will be looked after and loved and included in a way that makes her life fulfilling. I worry, first and foremost, that one day she will tell me that her life has been too full of suffering and that she wishes that I hadn't kept her.

My hopes and dreams are the same as they are for any parent. That she will lead a happy and fulfilling life and feel in her bones how deeply loved she is.

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?

Holly: Koko is a natural born comedian, she makes us laugh every day. When she was 4 weeks old, after I was completely blindsided by a doctor telling me, while smiling, my newborn was "probably blind", she looked him dead in the eye a did an obnoxiously loud, squelching poop. Koko also had to wear a hip brace for 6 months, so she kind of looked like a sumo-wrestler, and my husband at the time also broke his collarbone and was in a sling. Family outings looked pretty hilarious at this stage.

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

Holly: I feel like 90% of people come from a good place of wanting to be kind and helpful but they are just so unsure of how to approach the situation. That's part of why I have an online presence for my daughter, my hope is that if people are more used to difference in public space then they won’t get so awkward and wonder about what to say. I also feel like, it's obvious when someone means well and then, even if they say something a bit dumb, I forgive it pretty quickly. Then there are the 10% that are just nasty, but that's life. Koko's condition quickly weeds out those people you'd be best to have nothing to do with, and then we just let that go and I find those opportunities useful in modeling to Koko how to shrug it off with grace (which I am learning and getting better at with age).

One thing that I find a bit irritating is when people talk about my daughter as if she isn't there, but I feel like this is pretty common in the way people treat all children, so I don't think this is about Koko so much as a general lack of regard for kids being human beings. It’s fine to ask what Koko is wearing on her head if you have never seen a Cochlear Implant, but also, be aware that the details of my daughter's complex medical history aren't really your business. Just as I wouldn't ask you for yours unless it was offered. If you are treating her story as a small talk subject and going to give it the emotional weight of mentioning the weather, just don't say anything. Talk about the weather.

Miggy: If you could say something to the mom who just starting on this journey of CHARGE syndrome, what would you say? What would you say to yourself if you could go back in time?

Holly: I was so desperate to know if my life and my family's life was going to be one of misery. I felt such huge responsibility for how my decisions would impact my husband and myself and most importantly my child. I wish I knew then that there are really difficult, terrifying moments and sometimes even days, but mostly, we are just a genuinely happy family who feel really lucky to have each other.

I actually made some youtube videos for this reason. I wanted people in similar situations to be able to see what our life looked like. I think it was also kind of my therapy, it gave me a reason to get dressed (occasionally, a lot of them are in my pjs). I look back at them now and find it difficult to watch because there are so many raw emotions in them, but I wanted to try and strike a balance between not glossing over the tough stuff and also letting people see that most of the time, we are pretty happy and cope pretty well. I also instagram @hollyetkoko for this reason, which is how I found you! (if you want to check out the youtubes, google holly et koko)

Miggy: What is the biggest lesson you’ve learned since becoming Koko's mom?

Holly: Koko has this incredible ability to be in the moment, she has been poked and prodded and messed with by so many doctors and medical professionals in her short life and as soon as it's over with, she lets it go. She never dwells on her trauma or feels sorry for herself. She laughs all the time and sees the lighter side of everything. I am still aspiring to be that resilient.

The other thing, is how damn lucky I am to be Australian. The health coverage and services we get here are pretty great, I see and hear things that parents of kids with CHARGE are having to shell out for in the USA (like hearing aids!) and my blood boils. We had pretty much the best ENT in the world for Koko's Cochlear Implant and the something like $18,000 device and didn't pay a cent. Truly, this is a lucky country.


Holly, thank you so much for sharing your story and your sweet Koko with us today. This line in particular struck a chord with me: "I worry that there is not enough compassion and acceptance in the world and if my daughter will be looked after and loved and included in a way that makes her life fulfilling." Probably the most immediate shift in my thinking, before my daughter was even born, was a new understanding of pity.  After learning about the struggles with our pregnancy, so many people expressed their sorrow for our unborn baby saying such things as "poor thing" and "she's going to have a hard life." I knew people meant well, but I also knew that their thinking about my daughter's life was going to be a big part of the challenges she would face. Pity is not compassion, and treating people with disabilities as a service project is not acceptance. Real acceptance and real compassion take a little work and mental adjustment. I still find this to be true for myself, even as a special needs mom and even after all the interviews. There is not one nice and neat script for how to approach disability. But I hope we continue to strive for understanding and reaching out in genuine friendship, compassion and love. Koko is worth it, Lamp is worth it, humans are worth it. 

Lastly, I too will echo the amazing feeling of having pretty much all your health care needs covered as we used to be in the Air Force and when Lamp received her power chair and prosthetic arm in the same day--for a grand total of $20K!--we didn't pay a cent. We too knew we were very fortunate. 

Thanks again Holly! And please give Koko a big hug from me.

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!

Wednesday, February 22, 2017

Favorite Shows Featuring Disabilities

Recently one of my favorite shows, Switched at Birth, returned from a long hiatus for it's final season. It's a show that has a lot to do with the deaf community and has been really eye opening for me. I thought I'd do a quick round up of some of my favorite shows and movies that center around disability and talk a little about why I like them, what resonates with me, what doesn't, etc. Of course I'd love to hear your thoughts as well. 

First up, Speechless. Such a great show. Really, a show like this has been a long time coming. It's a sitcom centered around a special needs family, the DiMeos, who have three children one of which  who has cerebral palsy and is non-verbal. While it is based on the lives of a special needs family, as creator Scott Silveri puts it, "this is no documentary about disability."

I love this show for a few reasons: One, it's really great that the actor who plays the character also has CP in real life. This might be new to you, but the idea that disabled characters should be played by disabled actors is a kind of a whole, big, thing. (Since Rain Man, 14 of the 27 Best Actor Oscars have gone to a man portraying the sick or handicapped...yeah. This is problematic for many reasons. Don't even get me started on You Before Me.) Think of it this way, back in the day white actors sometimes wore black-face to portray black characters, but that would never be appropriate now. This is really another conversation for another day with a lot of nuance, but long story short, it's really great to see a disabled actor playing a disabled character on TV. And on a sitcom!

The second reason is I love Speechless is I AM THAT MOM. This show nails the special needs experience in so many ways and for me the over-protective, out-spoken, ready-to-advocate-at-the-drop-of-a-hat mom is so very relatable. When I said this to one of my best friends she said, "No! You're not crazy like she is." And I was like, "Oh, she's not crazy. She's a special needs mom."

I really like that this show is not preachy or sentimental (like me-ha!) but I appreciate what creator Silveri said about hoping that a show like this would help others be more comfortable around people with disabilities: “I’d be very happy if this show, or any show in general, were able to demystify this a little bit,” Silveri says. “Both of these things are done out of discomfort, but there’s starring and there’s ignoring and there’s a lot in between. It’s not born out of malice. It’s just out of a lack of experience. Something that’s foreign, it scares people, and I’d like to demystify that." Amen to that.

Switched At Birth
So this is the show that is finally back for the 5th and final season. I started Switched at Birth when Zuzu was just a baby and I needed a show to nurse to. The main reason I decided to watch this show was that a friend of mine from San Antonio, well it's her sister-in-law (Katie LeClerc) who plays one of the lead roles. Crazy right? It had already been on the air for a couple seasons (back then it was on AbcFamily, now it's FreeForm) and when I started watching it I had no idea that so much of the show would center on the deaf community and deaf culture. It has been such an eye opening show.

First, it is a little on the cheesy side, that is just the nature of the ABCFamily type shows and you just gotta embrace it. But there are some real all stars in the cast like Lea Thompson and Academy Award winner Marlee Matlin and for all you Gilmore Girls fans it stars a grown up April Nardini aka Vanessa Marano (who I met at the GG fan fest, so we are basically besties.)

Again, another thing I love about this show is that it features quite a few people who are deaf or hard of hearing in real life. Marlee Matlin, Sean Beardy, Ryan Lane and even everyone's favorite Top Model and Dancing with the Stars champ Nyle DiMarco has been on this show.

As I said, I've learned a lot. I've learned that most deaf people don't consider themselves disabled, within the deaf community cochlear implants are rather controversial, and like many people with disabilities they want to be accepted for who they are and not seen as a population that needs to be fixed. They have done some really awesome episodes, for example they did one episode (I believe the first TV show ever?) entirely in ASL (American Sign Language.) No voice over or talking allowed. Additionally, the show tackles some really controversial and interesting subject matters outside of deaf issues and rarely ties it up all nicely with a neat little ending. Subjects including date rape (did he or didn't he?), race relations and the arrival of a baby with Down syndrome.

This is the perfect time to get started on Switched at Birth since it's in its last season and is prime for catching up by binge watching and then watching the very end with everyone else. You know you wanna.

Temple Grandin
I can't think of a movie that features an actor with a disability, but hopefully that will start to change right? That being said,  the HBO movie Temple Grandin is a fantastic movie. (Which I just found out you can stream for free if you have Amazon prime!) Temple Grandin is a real life person who has Autism. I highly encourage you to watch her TedTalk which, in my view, goes hand in hand with the movie. Her message in the Tedtalk is that the world needs all kinds of different minds, including the Autistic brain. I think that message can be broadened quite a bit to say that the world needs all kinds of bodies, perspectives, experiences, and journeys and that includes the disabled body/perspective/experience/journey.

I appreciate that this movie goes on to show Temple's journey as a person with Autism trying to forge her way in a world that is not made for or by Autistic people. It is sometimes difficult to watch, heartbreaking even, and  brings to light the truth that many of us feel which is that disability itself is not a disabled person's biggest stumbling block, but rather how society views that disability and the barriers they place around it.

A quote from Temple in the movie gets me every time: "They knew I was different, not less. I had a gift. I could see the world in a new way." 


Anyone else loving the shows I've talked about above? Anything else that I've missed? I feel like My Left Foot would probably be a classic in this category, but I've never seen it, therefore I'm not sure about the message and authenticity. Even if disabled actors aren't playing disabled characters (which I don't think should necessarily happen 100% of the time, but definitely more than 5% of the time) I really hope the stories centering around disability don't fall into the victim/hero stereotypes. Again, what else am I missing? Also, any thoughts on any of the ideas I've talked about as far as representing disabled people in movies? Do you agree, disagree, is it all new to you? Talk, dish,  discuss!

Friday, February 17, 2017

Special Needs Spotlight || Ryder

Hello All! I am Meghan. Mama of Ryder (almost 5!) & Gunner (2), and wife of Matt. My husband and I met in high school and got married in 2009 (not really high school sweet hearts, but definitely a typical Midwestern love story ). My husband was serving in the Marine Corps at the time of our marriage, so I moved to Virginia in 2009. After 2 years there, my husband received orders to Southern California. Around that same time, we found out we were expecting Miss Ryder May (insert all the heart emojis!!!!) We moved to California in 2011, and Ryder was born in 2012. After his third deployment, my husband decided to separate from the military. We left sunny San Diego for Scottsdale, Arizona. About three months into our life there, Ryder had a seizure that embarked us on an emergency move back to Cincinnati. For the past 5 years we have spent countless hours searching for an answer to Ryder’s delays. In November of 2016, we got our answer. Ryder was diagnosed with Asparagine Synthetase Deficiency Disorder. She is one of around 19 reported cases in the world, and the first ever at Cincinnati Children’s Hospital. In my spare time I enjoy sleeping, eating chocolate, wandering aimlessly in Target and catching up on Grey's Anatomy!


Miggy: Hi Meghan and welcome. Thank you so much for sharing your journey and your sweet family with us today. So can you take me back to the day you knew something wasn't quite right with your daughter, Ryder? Was it during pregnancy, shortly after birth or sometime after that? If it was a little later what were some of the red flags and how long did it take to get a diagnosis? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Meghan: I cannot really pinpoint when I knew something was wrong with Ryder. This is going to sound bad, but maybe closer to 3.5 or 4 years old?? The first few years of her life are a blur. My husband deployed when Ryder was 7 months old, and returned until she was 15 months old. From birth, we were in and out of the hospital with reflux issues that remained undiagnosed until she was about 6 months old. She was 10 pounds, failure to thrive at 6 months old before her doctors finally put her on reflux meds. I thought until she was about 9/10 months that she “had a rough start” due to the reflux and failure to thrive and that she would catch up with her peers. Around this time we did an MRI, due to developmental delay and small head circumference, where we found out she had white matter volume loss in her brain. The MD told me “It’s just not as white as it should be. We expect her to continue to gain skills just at her own pace.” I left thinking she would just be behind. I was a 27 year old, clueless as anything, first time mama.

Her seizures began a few months later, and they ran a genetic test called microarray to rule out a genetic disorder. That test was negative. In a nutshell they told us to enroll in therapy and continue life as planned. We treated Ryder like a “normal” kid, and still do. We did all the therapies, skills came but were slow. I remember saying, “She will walk by two”. Well she crawled by 2, but is now almost 5 and still doesn’t walk. In July of 2014, Ryder had a well check with a new pediatrician in AZ. As soon as she walked in she asked, “Have you ever heard of Angelman’s Syndrome?” I said, “No!”, and dismissed her ideas as craziness. In August of 2014 an absence seizure. The doctors in Arizona sent us to a rare disease specialist. The first thing he said to us was ““Have you ever heard of Angelman’s Syndrome?”. He wanted to run genetics testing for the disease. We decided to move back to Ohio to be seen at CCHMC. They ran two Angelman’s test, both were negative. When the seizures continued and all test were negative, I asked to switch Neurologist. At this point I really realized that something was off. She was not getting worse, but not getting better and this would be lifelong. We could no longer continue thinking that this was going to get better or be “fixed.”

We met a neurologist, Dr. Franz who has changed Ryder’s life, and has kept me sane. At our initial appointment with him I told him I needed him to be honest with me and tell me what life with Ryder would look like. Everyone else gave a cookie cutter answer in the past. He said that Ryder would be dependent on us her whole life, but he expects her to walk, communicate, have friends, learn, have a job with assistance. He said the take away is not what she can’t do, but what she can. He said her life has meaning, and purpose. There is a reason why she is here. Focus on the good. I will never forgot that moment. Whether it was the moment I came to terms with the fact that there was something wrong, or the moment it all came full circle, I don’t know. I do know I am forever grateful for that moment in her journey.

I am a completely different person now than I was at the beginning of all of this. I am a chatty Kathy, but I internalize a lot of things when it comes to Ryder. It is painful. I remember being so scared and almost embarrassed to tell people about her struggles. Aside from our family and close friends, I did not publicly announce Ryder’s journey until 2015. I have never been ashamed of her. She is a damn rockstar. I always felt like it was my fault, or that I caused her issues somehow. Now, I just tell people who she is, and how far she has come. We are hopeful for her future, and she has a team behind her that is rallying for all her success.

Miggy: As you told me in your email, Ryder's condition is super rare--as in she is 1 of 19 people in the world with this condition. Can you educate us on your daughter's condition and explain how her needs affect your day-to-day life?

Wednesday, February 15, 2017

Read || On Granting Permission

I used to watch the show What Not To Wear on TLC. You know, the make-over show with Stacy and Clinton. But saying that it was a "make-over" show implies that it was perhaps shallow and superficial--like the hosts just slapped some fashionable clothes on some unfashionable people and called it good. I don't think that's how it went.

Please keep in mind that this is not really what I want to talk about, but we have to talk about this for a second first.

So What Not to Wear (or WNTW hereafter) was a valuable show in my estimation that provided a substantial service both to the viewer and the participant. (An anomaly in the world of reality TV.) While WNTW was a make-over show it was so much more than clothes, a good haircut and a make-up lesson. It was about helping people do this thing that my friend Stasia, a stylist, does really well--something she calls inside outside congruency. Stacy and Clinton helped people match who they were on the outside, to the person they are on the inside. I believe it is also encapsulated in the idea of Look good, feel good, do good.

I don't think it's too much to say that for some people the experience was life changing.

I have always believed that the physical world and the spiritual world go hand in hand, and are meant to enhance each other. Yes, inner beauty matters most, but I also believe our outer selves can be a reflection of our inner selves, and vice versa. (Obviously we could go on and on about the importance and influence of design, art, music and beauty in general--but I'm keeping it basic here.) Of course there will always be examples where these two ideas don't match up at all--a beautiful person who happens to be a terrible human being, or a very uncomely person who has a heart of gold. I want to acknowledge those extremes while also reminding you that this is not really what I want to talk about.

What I want to talk about is the word permission. Time and time again as I watched WNTW the word permission constantly came into my mind.

WNTW hosts, Stacey and Clinton were teaching people how to dress their body type, they were teaching them about clothing and fashion, and they always gave them a set of rules to follow, but they also gave them this really big gift called permission.

Friday, February 10, 2017

Special Needs Spotlight || Ruby

Hi Everyone! My name is Stephanie and I am married to my highschool sweetheart Daniel. We both went to college together, graduated and then got married. We currently live in Huntersville, NC but plan to move to Denver, CO this summer. I love coffee, consignment/thrift shopping, cooking and Netflix. My hubby is in IT and likes Star Trek, anything with bacon and enjoys traveling. We have two daughters, Evelyn (9) and Ruby (5). Both girls love swimming, skiing, and arts and crafts.


Miggy: Welcome Stephanie! Thank you so much for participating in today's Special Needs Spotlight. Let's start at the beginning, you adopted your daughter, Ruby, when she was 2 years old and presumably you already knew about her needs. Did you intentionally want to adopt a child with special needs or did you simply know that your daughter was meant to be with your family regardless of needs? Most of us special needs parents don't choose this path beforehand and often there is a lot of fear in the beginning. How did you feel in regards to her additional needs? Can you compare those first feelings with how you feel now?

Stephanie: Hi Miggy. When we first decided to adopt, we almost immediately knew we wanted a little girl from China. My parents have friends whom had adopted a little girl from China and she was the flower girl in our wedding. It just felt right. So we started to do research and discovered that to adopt a “healthy” child from China would take 5-7 years. We didn’t want to wait that long, so we chose special needs. Our oldest daughter had some medical needs/complications the first few years of her life so we felt called to adopt special needs.

While Daniel and I were still completing the adoption paperwork, we got a phone call from a woman at our agency. She said they had this program called Special Focus and asked if we were interested. Special Focus is a program for children with what they considered severe needs. The orphanages in China try to match these children with families as soon as possible. Daniel and I immediately said yes to the woman and she said “Great! You have been matched. I’m emailing you her profile right now. You have 48 hours to decide if you want to adopt her.” We were shocked. We still hadn’t completed all the paperwork to adopt, but we were matched.

We spent the next 48 hours reviewing her very small profile and medical report. We sent her information to our pediatrician for review. But, if I am real honest… the moment we opened that email, we just knew. She was our daughter. It didn’t matter what her needs, she was ours. Her needs didn’t scare me or worry me. I just wanted her home. We were ready for her to be home. My feelings about her needs have changed since she has been home. I’m still not scared but I do worry. Like all the time, but that is part of being a mom. I worry so she doesn’t have too. It’s my job to protect her. It’s my job to advocate for her.

Miggy: Will you please educate us about Ruby's condition and explain how her needs affect your day-to-day life?

Wednesday, February 08, 2017

Read || Opportunity + Other Lessson from Alt

On a recent trip with my brother he talked about getting himself out of trouble and onto a good path in his life. He told me, "I can say one thing for sure, I have taken every opportunity that has ever come my way." That has stuck with me and became a bit of a mantra lately. Take every opportunity that comes my way. 

Last week, as many of you know, I went to Alt Summit. Alt is a conference for bloggers, designers, and entrepreneurs in the creative space. This is the 4th year I've gone to Alt and I love it, in a very nerdy sort of way. I am the Hermonie Granger of Alt Summit--I go to every class, on time, sit in the front, take copious notes and talk to the teacher afterward for clarification. I freaking love it. 

I have always looked at Alt Summit as one big opportunity but this time, with my brother's advice ringing in my ears, I really took it to heart. Take every opportunity that comes my way. 

Here are a few things I took away from Alt this year. Some of it is from the speakers and some from my own experience. The great thing about good advice is that it is usually universal and can be applied to nearly every situation. Blogging, design, life, whatever... good advice is good advice.
Get Uncomfortable
"Only when you get uncomfortable does change happen." That's a little quote from my favorite trainer Jillian Michaels, but again this is LIFE.

Friday, February 03, 2017

Special Needs Spotlight || Paul + Simon

Hi Miggy and readers! We are a family of 7, and two of our five children have serious Congenital Heart Defects. I grew up in Alberta Canada, and my husband Adam is from Houston Texas. Our son Jack (9) was born in SLC, and our middle kids, Paul (7), Miriam (5), and Jane (2.8) were born in New Haven CT while my husband was a PhD student. We moved back to UT, but Provo this time for a professor job at BYU, and then added one more child, Simon, just last year. As a family we like to spend time outside, and at the swimming pool, but if I'm being honest, sometimes it feels like all we do is move (we have lived in 10 homes in 11 years of marriage), have babies, and have heart surgery. So basically our hobby is surviving. We are actually keeping our fingers crossed that 2017 will be the first of many years where we do none of those three things.


Miggy: Hi Carlee and welcome. I'm so glad you're here sharing your story, your experience and most importantly your family here with us today. As you told me in your email you are the mother of 5 children, 2 of them born with Congenital Heart Defects (CHD). Let's start at the beginning... when did you learn about your first son's heart condition? Was it in an ultra sound or sometime after birth? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Carlee: We found out that there might be a problem with our son's heart at our regular ultrasound. He was in a position that made it difficult to see, so we actually came back 2 weeks later for a follow-up ultrasound before getting the news that there was definitely a problem with our baby's heart and that we would need to go see a fetal cardiologist to get a echocardiograms so that we could have an official diagnosis.

When they first told us there might be a problem we were so hopeful that it was just a matter of bad positioning, but after the second ultrasound and later the echo where they diagnosed him with Ebstein's Anamoly we just felt crushed. Our son Paul's condition is pretty rare and can vary a lot both in terms of anatomy as well as how well the body tolerates this anatomy, so we were dealing with a lot of uncertainty. It was a truly awful feeling knowing that I was carrying a baby that was safe inside me, but could die immediately at birth. I felt like my pregnancy was a ticking time bomb. Now that we are on the other side of most of the scariest parts of his medical issues (at least we hope so) I sometimes wonder if it was really as bad as I remember. Looking back at pictures and our family blog reminds me that those weeks leading up to and after his birth really were as hard, or harder, than I remember.

Miggy: Fast forward a few years and you now have another baby boy with a heart condition. Tell us about this experience the second time around--were the feelings similar? Did you feel more or less afraid, or even afraid at all