Friday, January 30, 2015

Back to the beginning

In the beginning there was ... an idea
This is the beginning of my fundraising journey. I want to start by admitting to two shortfalls in my ambitious fundraising plan. First, I do not really know specifically how to raise all the funds I am wanting to raise for the Children's Craniofacial Association and second I have realized that I was not really sure what was the best way to tell Erin's story.

But I do know how to learn ... ask questions.
One thing I'm doing to figure out how to hit my fundraising goal is asking for help from those who have fundraised before me. I recently with my friend Cristina, better known as

When I asked Cristina to meet with me. She mentioned that she was terrible at fundraising which I thought was pretty humorous thing for her to say given her accomplishments. Truth: We are always our own worst critics. Cristina successfully raised money for causes near and dear to her while she trained for Ironman Florida and Ironman Arizona.  She has just launched a new non-profit named ThumbsUp! International. 
We look pretty good I think!

We talked for a long time and she told me many things which I have boiled down into a single salient piece of knowledge. To raise money, I will need to ask people to give me money. Yup, she's a smart cookie.

So I'm going to do that. I'm going to ask my circle directly and on this blog I'm going to ask folks for money too.

But, remember there is another thing that I felt like I didn't know how to do which was to tell another person's story. Well I think I solved that one on my own. I'm going to tell a bit of both of our stories today. I think that one reason that I feel moved to tell this story and to raise this money is because of the parallels or similarities in our stories of momhood.

So, now that those problems are solved let's get back to the beginning. 

The beginning of a friendship.
I met Erin in college. We were both sorority sisters at the University of Kansas.
We were I think Juniors in college here.
Then we graduated. We both got married and eventually reconnected on Facebook.

The beginning of a pregnancy

We are both parents ... moms specifically Pregnancy and motherhood unite moms around the globe. Once I went through this pregnancy journey I was changed forever (and I don't just mean stretch marks).
Oh, how round I was. I was not a fan of pregnancy.

A typical pregnancy is 40 weeks. In the beginning, it's just a secret that you and your partner and maybe your obstetrician know about. Many people "go public" with a sonogram picture which can happen at any point but most people participating in a traditional western pregnancy overseen by an MD / OBGYN will have a diagnostic sonogram which happens at 20 weeks.

I remember my 20 week sonogram. I remember meeting with a doctor before hand to tell me the purpose of the test. I remember wishing that doctor would hurry up because I really had to pee.

"We" had decided not to find out the gender. Since this is a pregnancy story I mean the "royal pregnant we" which is really just me.  My husband went along as if he actually had any say in the matter.

I remember being excited to see hands and feet and noses and all the other cute parts. I remember my husband being concerned that with all his knowledge would be able to see the gender during the sonogram and ruin my planned surprise. I remember us laughing when he realized that an uneducated eye cannot tell the difference between a leg and a penis in this little grainy black and white picture so there was absolutely no possible risk of either of us accidentally determining the gender.
These are early sonograms of my daughter. I had a tubal pregnancy before so I had an early sonogram in the ob's office to make sure that this pregnancy was in the correct spot.

Then I remember taking pause as the technician started to point out important things like, bladders, spines and chambers of the heart. I quickly understood more clearly the reason for this diagnostic test. My children are both healthy but at my daughters sonogram they had some trouble "seeing" all four chambers of her heart. The technician wanted to reschedule for another later sonogram but I was sort of immediately overcome with anxiety.  I didn't want to wait for another appointment to hunt for more heart chambers. In the end the technician yielded to my pregnant hormones and more specifically my husband's negotiations. I wiped off the jelly on my belly walked around, stretched and jiggled and bounced around a bit to jostle the baby. The technician tried again and we were able to get a better angle and see all four chambers. And I breathed a huge sigh of relief. I'm a pretty serious person by nature and I remember sitting in my car afterwards just taking a moment to think about the test and feeling lucky that everything was okay.

I personally wasn't a fan of pregnancy but mine continued normally and I grew to the size of a small planet.  After what seemed like forever but was just 40 weeks I delivered a healthy baby girl who continues to light up my life. 

No news is usually good news when it comes to a pregnancy story
You can probably guess that Erin's story is more dramatic than mine since you know that I'm raising money in her honor for the Children's Craniofacial Association. Like me she has more than one child. Like me her first pregnancy was normal and for her second it started normally too. Then her story get's more dramatic. Trust me, a normal pregnancy is dramatic -  enough any extra drama is not the preferred direction.

Because her first pregnancy was normal she and her doctor didn't do a sonogram until the 20-week diagnostic. At her 20-week sonogram it was discovered that there were two babies in her belly. TWINS.  I honestly can't imagine that surprise. I continue to be very impressed by parents who raise twins.

They were unable to get a clear picture of one of the baby's heads and they were sent to a perinatologist. At this point in the story getting to this specialist also involved a trip to the big city which was "Sioux Falls" (not a very big city).

At 22 weeks they met with the perinatologist who told them, "I think your baby has Apert Syndrome."

This is actually a 3d sonogram of babyA from 30 weeks. I never had a 3d sonogram the clarity is amazing.
The Children's Craniofacial Assocation gives this description of Apert Syndrome:

Apert syndrome is a condition involving abnormal growth of the skull and the face due to early fusion of certain sutures of the skull. Children with Apert's have bulging eyes that are usually wide-set and tilted down at the sides. They usually have problems with teeth alignment due to the underdevelopment of the upper jaw. Some have cleft palate. Among other anomalies, children with Apert syndrome have webbed fingers and toes.

3d sonogram of babyB from 30 weeks. Sleeping babies are cute even inside the belly.

Now is a good time to take a big deep breath
Most of us know in an academic sense that something can go wrong when we're pregnant - that we could get bad news. But as for actually hearing that news? It's hard for me to wrap my head around the idea.  Keep in mind that Apert Syndrome isn't caused by anything. It isn't hereditary. It just happens. It can happen to anybody.

Until I heard Erin's story I had never heard of Apert Syndrome. Neither she or her husband had ever heard of it either until it came into their lives.

Erin and her husband spent an hour in a genetic counselors office learning about Apert Syndrome. I am not an expert on Apert Syndrome and to be honest I'm super afraid of making a mistake in describing it. So if you're curious about details please visit the Children's Craniofacial Association directly.

Living in the moment
Then they went home and tried to process this news. They just continued being pregnant. She describes this time as being "weird." I think that's a good word. They learned that there is a huge range of kids who have Apert Syndrome.  Since they didn't know what would happen yet so they wanted to , "enjoy the heck out of being pregnant with twins!"

So they did. Apparently Erin's husband is a great cook. Which is good because the job of every pregnant woman is to eat. So Erin ate! She says that eventually she needed her own zip code. Every pregnant woman feels that way but women carrying multiples ... they are correct. Erin has a great sense of humor and a wonderful laugh. I remember that from college that her laugh is contagious. It's good to have friends with contagious laughs.
Erin at 35 weeks. There's a lot of baby in that belly :-)

Erin's twins were delivered at 36 weeks. All her eating worked and they were both nice healthy sizes. Eli was a whopping 6 pounds 9 ounces which is huge for a twin. She did a good job of growing nice big babies.

Even though Erin had gone through genetic counseling and had had a 3d sonogram at 30 weeks. Erin says he was much more malformed than any sonogram could have prepared them to see. He was also very sick and was taken directly to the NICU to deal with his medical needs. Erin didn't even get to touch him before he was whisked away. In Erin's words, "it sucked."

Anybody who has gone through delivery knows that moment where you see and hold your new baby is magical. When a new baby is so sick he's whisked away for medical help ... I don't think that's a fun time. 

But don't forget Eli is a twin. In addition to worrying about her newborn son's health. Erin had her newborn daughter Allie to care for. Erin asked if I could imagine and I absolutely cannot imagine. In her own words she describes this time:

It was an extraordinarily difficult time.  Allie was discharged with me.  Eli was in the NICU for 3.5 weeks with breathing, heart, and eating issues.  It was exhausting.  I look at pictures now and have NO recollection of that time.
In my experience raising a healthy newborn is difficult. Twins I imagine is super difficult and to be honest my heart breaks in anguish trying to imagine the challenges these two parents and their extended family faced with one twin in NICU and a healthy newborn to juggle. Erin calls her son a rockstar. I personally think she and her husband are equally deserving of this title.

This is the beginning
So, this is the beginning. The beginning of a story of a family with a son born with Apert Syndrome.  This is the beginning of my fund raising.

Please donate to the Children's Craniofacial Association
As I train for Ironman Lake Placid I am raising money for the Children's Craniofacial Association.

Erin tells me that the CCA does extraordinary work in education and outreach, offering tools to assist those who have just received a diagnosis, those who are transitioning to school, and even adults with Craniofacial abnormalities. They host a retreat every summer for children and adults with Craniofacial conditions and their families. There are seminars but mostly it's a chance to just come together and be "ok" for a few days. And CCA also offers financial support for those who need it when traveling to see specialists. Erin and her family use this group and so I'm very happy to be raising funds for a group that she suggested.

I have a lofty goal of $14,060.00.
Get it?
Hint: An Ironman is 140.6 miles.

Donations are already coming in because Erin has a strong group of friends who love her. Please help me to reach my goal by donating. 

I have chosen to collect funds through a website because every dollar donated will go to the Children's Craniofacial Association. There is no overhead, there are no prizes being bought with the money you donate. You put it in there and in six months they will send over a hopefully very healthy check to this group.

I'm stealing this line from Marlo Thomas because there is no better way to say this. Be thankful for the healthy kids in your life and give to those who are not.  

Click here to donate.

Please share
As a last request. If you happen to be touched or interested by this story please share it. The farther it goes the more people it will reach which should mean the more money that will be donated.

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