Aunt Kate

I have a friend named Kate.

I met her during my freshman year of college when we went to the mountains of Mexico and ate out of crock pots and built things and almost fell off a mountain in a fifteen passenger van. A week later we stayed up until the sun came up just talking about life. She's one of my best friends, the kind that is there in your best memories, the kind that is there they day you get married, the kind that flies down to see you in the wake of your worst.

Today I want to share a little bit of Kate with you. The part that is 'Aunt Kate.'

I have for you the story of Kate's precious niece. Oh how that little girl I never even met holds a place in my heart.

June is CMV Awareness Month. And I was blown away at the statistics for a disease that I had never heard about in all of my pregnancy books and apps and research. But most of all Evelyn's story is too wonderful to not share.

It's one for the Puffs Plus with Lotion, but it's one for the glory of God too. I pray you see the beauty in this story, the glory in Evelyn's short sweet life.

 

Losing Evelyn: June is CMV Awareness Month

June is an important month for my family because June in CMV Awareness Month. I’m thankful that Brittany is allowing me to appear as a guest blogger on her site today to share Evelyn’s story.

For those of you who don’t know me, my name is Kate. I am Evelyn’s aunt. I’ll be the first person to admit that I don’t quite understand the unconditional love a parent feels for their child simply because I am not a mother. I don’t know the joy of creating a life and I can’t even begin to imagine the heartbreak that comes with losing it. But what I do know is that I loved Evelyn the way an aunt loves her niece…and then some. She made me a better person, gave me a perspective on life I wouldn’t otherwise have, she even changed my career. I loved her so much and I miss her every single day. When I held her one last time and kissed her goodbye, I promised her I would help her mom and dad tell her story. So, today, I’m going to tell you that story. For Evelyn. For her parents. For all of the CMV babies out there. For all the CMV mommies and daddies. Because CMV awareness matters to me. And I hope it will matter to you, too.

 

This is my beautiful niece, Evelyn Grace Spytek. Evelyn was born with congenital CMV. In December 2014 she passed away due to a CMV-related surgical complication. She was only 21 months old.

Losing Evelyn was the first time in my life that I experienced true and utter heartbreak. A heartbreak so intense that it makes you feel physically ill. A heartbreak so deep that it’s all you can do to just put one foot in front of the other while trying your best to help your loved ones survive. I’ve often thought about how overwhelming my grief has been during the last six months. It has a way of sneaking up on me in moments I least expect it. I’ve been overwhelmed shopping for a friend’s newborn baby girl – seeing only Evie in my mind when I’m looking at precious little girl clothes. I’ve been overwhelmed in quiet moments of prayer as I pray for strength and healing and peace for her parents. I’ve been overwhelmed when I see her unopened Christmas presents that I can’t bring myself to open and return. But, at the end of the day, I know that my grief is small compared to what my brother and sister-in-law face on a daily basis. I can’t even begin to imagine how deep their heartbreak is. A parent should never have to bury their child – an aunt, her niece – a grandparent, their granddaughter. I’m sharing Evelyn’s story with you so you’ll hopefully never have to feel that kind of heartbreak – as a parent, as an uncle, as an aunt, as a grandparent, as a friend.  I’m sharing her story with you so you can arm yourself with knowledge about CMV and prevent it from touching your life.

Evelyn was born on March 12, 2013. She weighed 3 lbs. 14 oz. She was immediately admitted to the NICU at the Cleveland Clinic and underwent testing to determine the cause of her premature birth, low birth weight, and small head size. Evelyn was diagnosed with congenital CMV 48 hours later. The diagnosis was the FIRST time CMV was ever mentioned to my brother and sister-in-law despite a difficult and high risk pregnancy. Doctors began expressing concerns in week 19 of my sister-in-law’s pregnancy because Evelyn’s brain wasn’t developing normally. After a fetal MRI, doctors predicted that Evelyn may have neurological issues after birth. The cause was unknown. Congenital CMV was never mentioned. Later we would learn that doctors and the medical world are largely silent about congenital CMV even though it’s the most common viral cause of birth defects and disabilities in the United States.

In the weeks and months following Evelyn’s birth doctors told my brother and sister-in-law that Evelyn would face significant physical and mental challenges due to the neurological damage CMV caused during pregnancy. They said that she might never hear, never see, never walk, never talk. What followed was 21 months of poking and prodding, overnight stays at the Cleveland clinic, hearing tests, vision tests, neurological assessments, daily steroid injections to control her seizures, cochlear implant surgery, physical therapy, speech therapy, occupational therapy, etc. That’s a lot for a little girl to endure. Amazingly, she did it with a smile on her face and a laugh in her belly every single day. She was so strong and so patient. But in December 2014, a swallow study indicated that Evelyn was aspirating liquids onto her lungs. To temporarily correct the issue Evelyn underwent routine surgery and received a feeding tube on December 23^rd. Three days later she passed away suddenly and unexpectedly from a surgical complication. She was only 21 months old.
 

 

For those of you who have never heard of CMV – and 87% of women in the U.S. have not heard of it – CMV stands for cytomegalovirus. Contrary to what you may be thinking after hearing that the medical world is largely silent about CMV, it’s not a rare virus. It’s not some obscure virus you contract under obscure circumstances in some obscure part of the world. It’s actually so common that an astonishing 50-80 percent of the U.S. population contracts CMV by midlife. It’s a virus that is transmitted through bodily fluids such as tears, saliva, urine, mucus and blood. CMV typically isn’t something to worry about if you’re a healthy adult, but a primary contraction during pregnancy can be devastating to an unborn child. CMV causes more birth defects and congenital disabilities in children than all other well-known diseases, including spina bifida, Down syndrome, fetal alcohol syndrome, and pediatric HIV infection. CMV affects 30,000 babies a year – yet 87% of women have never heard of it. With a growing prevalence in the U.S., CMV awareness matters now more than ever.

In 2013 my brother and sister-in-law founded the National CMV Foundation in an effort to create more awareness of congenital CMV. Today they continue to grow the foundation in loving memory of Evelyn. Please take the time to visit www.nationalcmv.org and educate yourself further. Please share information with your friends and family. Doing so will help prevent CMV and reduce the amount of infections each year. If you’re pregnant or planning a pregnancy, know your risk. Ask your doctors about CMV and CMV screening. If they try to brush you off and tell you it’s nothing to worry about, push back. Protect yourself and help protect your loved ones.

I miss Evelyn every single day of my life. I miss her sweet smile and her infectious laugh. I miss her joy. I miss her patience. I miss her stunning grace. As my family and I continue to grieve, I find some comfort and a little peace in helping to create awareness. So, please join us in our cause. Together we can prevent CMV. Together we can create the awareness and support that the unborn deserve.

Until we meet again, Sweet Evelyn. I’ll love you for all the days to come.

 

Colorado in May

We've been Colorado-ing.

In the very best way.

Our summers bring us to Colorado and they set the scene for adventure and traditions and now, of course, giggles and snuggles and tiny baby laughs.

Except of course that there's not a baby here anymore because every day he's turning into more and more of a 'little boy' and less and less of a baby.

But just to sum up the Hess summer thus far, in May:

Survived a seventeen hour car ride to Colorado.

Check.

Made it into town through the snow to catch a little opening day at the Lake City Bakery.

Check.

 

 

Started eating solid foods (well, Lincoln did...).

 

Check.

 

 

Made our first stop of the summer at the San Juan Soda Shop.

 

Check.

 

 

Welcomed the summer staff in our opening day polo, nametag, and dreamy smile.

 

Check.

 



 

 

Flew across the country-ish to my sister's wedding and broke hearts with a tiny bowtie.

 

Check.

 

 

May was full of many things.

 

It was full of moving and staff training and adjusting to new schedules. It was full of insecurity and wondering if I would be able to do camp well as a new mom. It was full of sleepless nights. And then it was full of rest and love and reassurance that the Lord has us here in Colorado to love and serve in a way that he has prepared our family for, even if in new ways this summer.

 

May was full of birthdays and mother's day and baby helmets and snow and sunshine.

 

Oh May in Colorado, what a blessing.

Yep, It's a Helmet

So one of our first stops in Colorado was the custom orthodic office.

Because yes, my kid wears a helmet now.

For about a week now, Lincoln is one of ‘those’ helmet wearing babies. And I am one of ‘those’ moms who gets to explain why he looks like he’s playing football 23/7.

I will admit that I too saw the babies in helmets and wondered ‘what happened’? I didn’t know if there was a bad accident or a disability. Was it a disease that meant I needed to smile extra hard at the mom that was battling more than I knew? I just didn’t know.

When Lincoln was 4 months old I noticed that his head was getting flat on one side. I mentioned it to our pediatrician who agreed there was a flat spot developing and recommended we try to keep Lincoln off of the flat spot using a bit of repositioning.

So we played with the rainforest jungle floor mat a bit less and we did a lot of sitting and standing activities. I tried the little wedge under Lincoln while he slept but he’d just push the wedge out of the way so he could lay flat. In the beginning I would walk in once Lincoln fell asleep in his crib with his head (always) turned to the right and I’d turn his head to the left. But only a few seconds later, still asleep, he’d roll it right back to the flat spot.

So at our six month appointment the doc nonchalantly said, ‘yep, we’ll put him in a helmet and he’ll be good in no time.’ And there I was going “helmet!? What? But my baby is peeeerrrfect!”

I freaked out a little bit at the appointment while the pediatrician was out of the room. I sent a text to Kyle to let him know what was happening. And you know what…

He sent me a picture of him and his manly self wearing a silly helmet.

Because at his work they have silly helmets just lying around.

And because he’s the very best dad in the entire world. And he wanted to make sure Lincoln knew that helmets were cool. And that his daddy-o loved him very much.

He’s also the very best husband and his sense of humor put this momma at ease.

And that’s the story. Lincoln’s fine. His skull is not cracked or broken or missing. It’s just flat. So flat that he technically has moderate plagiocephaly (long word for flat head) that pushes his forehead, cheeks, and jaw a little bit forward on the right side. Later in life this could cause jaw/tooth misalignment, vision issues, and possibly cause this little kiddo’s bike helmet, football helmet, or super hero helmet not to fit properly.

So Lincoln wears a helmet.

23 hours a day.

7 days a week.

Until they tell us we can stop.

Is he still the cutest baby I’ve ever seen? Yes.

 

Does he get even more attention now for his cute little self? Yes, of course.

So just in case you see us out and about or all over Instagram: yep, it’s a helmet. It fixes his flat head. And yes, we think he looks cute in it too.