Everyday Superheroes

 Welcome to the March 2014 Carnival of Natural Parenting: Everyday Superheroes
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have talked about the remarkable people and characteristics that have touched their lives. Please read to the end to find a list of links to the other carnival participants.
***

“It is surmounting difficulties that makes heroes.” -Lajos Kossoth

superaustin
Superhero Austin

This has been a tough month for the Walker-Warburg Syndrome (WWS)  Facebook Family. Because WWS is extremely rare, most of us never meet anyone else in person that has the disorder. Thankfully due to the internet we can now connect with other families dealing with WWS. Many of the babies struggled in and out of the hospital with infections and breathing issues through the winter. Sadly, two of our sweet WWS boys passed away during the month of February. These babies are my superheroes.

My daughter Bella suffered from Walker-Warburg Syndrome. I wrote more about that, here, here and here. To briefly summarize the rare genetic disorder is characterized by Muscular Dystrophy, blindness (microphthalmia), Hydrocephalus and Lissencephaly. Most parents are given the diagnosis at the 20-week ultrasound. We are usually offered an abortion, which clearly the parents in this facebook group have declined. We’ve chosen a different path.

We’ve chosen to live with the uncertainty, the heartbreak, the struggle. Please don’t forget that we’ve also chosen love, life, and joy. Yes, joy wiggles it’s way in there when you choose love and life. These sweet babies have only entered our life for a short time, but they left an impression that will last. They may be small but they teach mighty lessons. Mostly I feel they taught us all a lesson in unconditional love. Their lives were important and they mattered.

“The hero is commonly the simplest and obscurest of men.”-Thoreau

0082Superhero or Rock Star?? -My Sweet Bella

Superheroes exhibit extraordinary strength and power. Here are a few superheroes that have touched my life:

My Bella. I witnessed her strength up close and personal. She was strong beyond words, as I believe all of these Walker-Warburg babies are. I know her life wasn’t comfortable. I know she suffered through seizures and surgeries. But most of all, I know she was loved.

Baby Austin- I haven’t met Baby Austin in person, I’ve met him through the WWS facebook group. It’s his family that gave me the inspiration for this post. They often dressed him in Superman clothes and refer to him as their little superhero, and that he was. He fought for 9 months and passed away in his Momma’s armsFebruary 16, 2014. You can see his facebook page, and learn more of his story here.

Baby Evan- Another sweet baby I’ve only been able to know via the internet. His chubby cheeks and happy disposition reminded me of my sweet girl. This superhero passed away on February 22, 2014. You can learn more about Evan HERE and support his family HERE.

captainheart
Baby Evan

Every superhero has a sidekick, these superheroes are no exception. The families that supported these sweet superheroes can not be forgotten. They are left behind to carry the torch with a broken hearts and empty cradles. They leave behind big brothers and sister. But most of all they leave behind memories that will be cherished forever.

***

Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be updated by afternoon March 11 with all the carnival links.)

  • I Am A Super Hero — Jennifer at Hybrid Rasta Mama shares how she learned the hard way exactly what it means to be a real superhero and not a burned out shell of a human simply pretending to be one.
  • Quiet Heroics — Heroism doesn’t have to be big and bold. Read how Jorje of Momma Jorje is a quiet hero…and how you probably are, too.
  • Not a Bang, but a Whisper {Carnival of Natural Parenting} — Meegs at A New Day talks about the different types of “superheroes,” ones that come in with a bang and ones that come in with a whisper.
  • Silent courage of motherhood in rural Cambodia — Nathalie at Kampuchea Crossings marvels at how rural Khmer women defy the odds in childbirth.
  • Super PappyMother Goutte‘s little boy met a superhero in checked slippers and Volkswagen Polo, his grand dad: Super Pappy!
  • An Open Letter to Batman — Kati at The Best Things challenges Batman to hold up his end of the deal, in the name of social justice, civic duty, and a little boy named Babe-O!
  • My Village — Kellie at Our Mindful Life reflects on the people who helped her to become her best self.
  • 5 Lessons My Kids Taught Me — Children are amazing teachers, when we only stop to listen. They remind us to choose happiness, to delight in the small things, to let go and forgive. There is so much we can learn from our children. Justine at The Lone Home Ranger shares a few of the lessons she’s learned.
  • Could you use some superpowers? — Tat at Mum in search shares a fun activity to help you connect with your own superpowers.
  • Like Fire Engines — Tam at tinsenpup tells the story of the day she saw a surprising superhero lurking in the guise of her not entirely mild-mannered four-year-old daughter.
  • Everyday Superheroes — Erica at ChildOrganics shares her list of Walker Warburg Syndrome Superheroes that have touched her life forever.
  • My Superhero of the Week: Nancy GallagherTribal Mama muses about the transcendent things her superhero mom has done.
  • My choice in natural birth does not make me a super hero — Bianca, The Pierogie Mama, discusses her thoughts on her experience with the perception of natural birth and putting those mamas on a different level. Does giving birth naturally give cause for an extra pat on the back? No! All mamas, no matter how they birth, are superheroes.
  • Someone’s Hero — Sometimes being a parent means pretending to be a grown-up, but it always means you are someone’s hero. Read Mandy’s lament at Living Peacefully with Children.
  • Growing into a Super Hero — Casey at Joyful Courage shares how owning our behavior and choosing to be a better parent, a better person, is an act of courage.
  • A Math Superhero — Kerry at City Kids Homeschooling writes that her 7-year-old daughter’s superhero is an MIT-trained mathematician.
  • It Starts With Truffula Trees And Tulips — Luschka of Diary of a First Child takes a hard look at the realities of her relationship with her mother, and through this post goes on a journey of discovery that ends in a surprise realisation for her.
  • We Don’t Need an Excuse — Maria Kang (aka “Hot Mom”) asks women #WhatsYourExcuse for not being in shape? Dionna at Code Name: Mama asks Hot Mom what her excuse is for not devoting her life to charity work, or fostering dozens of stray dogs each year, or advocating for the needs of others. Better yet, Code Name: Mama says, how about we realize that every woman has her own priorities. Focus on your own, and stop judging others for theirs.
  • It’s not heroic when you’re living it — Lauren at Hobo Mama knows from the inside that homeschooling does not take a hero, and that much of what we choose as parents is simply what works best for us.
  • Superheroes, princesses and preschoolers — Garry at Postilius discusses why his preschool-age son is not ready for comic book superheroes.
  • The Loving Parents of Children with Special Needs – Everyday Superheroes — Deb Chitwood at Living Montessori Now shares posts with resources for parents of children with special needs along with posts to help others know how to support parents of children with special needs.
  • Everyday Empathy — Mommy Giraffe of Little Green Giraffe shares why her secret superpower is everyday empathy.
  • The Simplicity of Being a Superhero — Ana at Panda & Ananaso explains what superheroes mean to her wise three-year-old.
  • My Father, The Hero — Fathers are pretty amazing; find out why Christine at The Erudite Mom thinks hers is the bees knees.

Advertisements

Bella- Part 1: A Special Needs Diagnosis

0029Today my Bella would be 8 years old, it’s hard for me to imagine what she would be like if she lived to be that old. She was like a newborn during her short 16 months on earth, so I always imagine her as my darling little chunky baby.
We had a healthy three-year-old when we were pregnant with Bella. We had planned her birth at our local birthing center. Since they didn’t do ultrasounds there, we were sent to a local hospital for our 20-week ultrasound. We were just hoping to find the sex of the baby and have an uneventful pregnancy. We took our daughter with us for the exciting day. It quickly became apparent that something was wrong when the ultrasound tech was very quiet and wouldn’t answer any of our questions. She excused herself from the room and came back with the doctor. The staff quickly ushered us into another private waiting room. The doctor and a nurse sat us down and quickly said that we were pregnant with a girl, but part of her brain was missing so it would be best to schedule an abortion. As the word was hardly out of his mouth my husband stood up and said “NO! That is not an option for us.” We start asking questions, not getting any answers, crying and feeling like we’ve been punched in the gut. Needless to say, we were now in the high-risk category and our life was forever changed.   (See The Ultrasound and Goodbye Birth Center, Hello High Risk! )
Over the next few months, we had numerous ultrasounds and tests. I wrote more about her specific measurements HERE . By the time it was time for her to be born we knew she was missing a small part of her brain, she didn’t have normal eye development and she had hydrocephalus. There was a possible diagnosis of Dandy-Walker at this point. We did what we could to prepare ourselves with what information we had, we toured the NICU and began to brace ourselves for the tough times ahead. (See Touring the NICU) We started gathering our resources. The NICU social worker shared some places for us to start. We began to look into what services were offered in our state for families with special  needs.
Personally, I really struggled with the idea of having a C-section. I was in denial through most of my pregnancy that a Cesarean was nigh. It took a lot of mental preparation for me to be okay with the idea of a Cesarean. There is a mourning process you go through when you have a special needs diagnosis. Every parent envisions their newborn being healthy and growing up..taking their first steps, saying their first word. I was mourning the loss of my healthy baby girl and all of the visions that come with that. I was also mourning the natural, peaceful birth I had envisioned. I struggled seeing healthy babies in the grocery store. I took up the habit of wearing my sunglasses inside the stores, because I never knew when the tears might begin to flow. It became a joke with my husband and daughter, they would comment how my nose was getting red, so they knew I was crying. The sunglasses trick is still one I like to use.
It’s important when you receive a special needs diagnosis that you gather all of the information you can get on the topic: research, research, research! You will become the expert for your child. You will feel at a great loss after the diagnosis, but doing research and gathering your information will help feel like you are at least moving forward and doing something. In our case, there were no books, only a few dismal case studies online. Our real learning came from chatting with other parents online. It’s really tough to be prepared for something when you have so little information. I look back  now at how little we knew at the time, we didn’t even have the correct diagnosis for our sweet baby girl. I”m so thankful that it’s becoming easier to diagnose and more research is being done on Walker-Warburg Syndrome. I”m so thankful that there are support groups online, the Walker Warburg Syndrome Facebook group has become a valuable resource for families with this diagnosis. It’s great to have parents to share your stories, gather information and give and offer support.
Our family and friends were very supportive through this tough time. It’s important to share your special needs diagnosis with friends and family. It’s true that some friends and/or family members may not be able to handle the news. They may need to go through a mourning period themselves. To be honest, so people will not know how to deal with the news and may not be able to continue to be in your life.  But it is also amazing to see the friends that will step up and go out of their way to be there for you and support you when you most need it. Filling our freezer with healthy, easy to prepare meals and offering childcare while went to doctor appointments were things we found most helpful.  Siblings to children with Walker-Warburg Syndrome don’t have it easy. We did our best to prepare our then three-year-old. We shared things with her on her level, but there was no way really for us to prepare how hard things were going to get. (See What’s a Big Sister to do?) We spent extra time with her before Bella’s birth, because we knew things were going to be very hectic afterward.  We also talked about the changes that were soon going to take place so it wouldn’t be a surprise to her.
Have you or a family member had to deal with a special needs diagnosis? What have you found helpful?

Celebrating Pregnancy

I enjoy being pregnant. I get excited to watch my belly enlarge each week, I get excited to wear maternity clothes and I love to feel the little life inside of me kicking and moving around. A lot of the joy has been sucked out of this pregnancy due to the complications of Hydrocephalus and Dandy-Walker to our unborn daughter. Instead of joy and excitement we are often left feeling anxious and depressed.
I really wanted to do something that would help me have some joy and celebrate this pregnancy. We decided to have some pregnancy photos taken. It was a great experience for our entire family. My husband was hesitant at first, but after some thought he agreed. He has a photographer friend at his work that was willing to come to our house to take the photos. We spent the evening posing individually and together as a family with my bare belly. The pictures turned out wonderfully and have brought me a lot of joy just to look at them. I’m so glad we did it!
I hope others take the time to do something to celebrate their pregnancy. Having maternity photos are only one way of doing this. You can use paper mache and make a mold of your belly to remember your pregnancy, you can do this yourself or buy a kit to make it easier. Other moms have had henna tattoos or some sort of artwork painted on the canvas of their tummies. Whether you are having a low or high-risk pregnancy I encourage every mom to be to take the time to really enjoy and celebrate their pregnancy.
At our appointment this week, I had to abandon all possibilities of a vaginal birth. Our daughter’s head circumference is now 370.80mms, or the equivalent of approximately 44 weeks. Her abdominal cavity measures around 246.80mms or about 29 weeks. The right lateral ventricle is measuring about 67mms and the left ventricle measures at 23mms. This was a tough appointment, I went by myself. My husband has always been with me up to this point. They needed three technicians to come in to do the measurements. I was more than happy to leave when this appointment was over! They have scheduled a lung maturity amniocentesis for this next week.