A Year Of First With Our Second

"Sisters don't need words. They have perfected a language of snarls and smiles and frowns and winks - expressions of shocked surprise and incredulity and disbelief. Sniffs and snorts and gasps and signs - that can undermine any tale you're telling." ~ Pam Brown.

 It may seem odd to write a year of columns about "firsts" as we welcome our second child into the family. Although life with a newborn is challenging, we've been here before. For the most part, we've encountered many of the "firsts" that come with raising children. Things like first time rolling over, first time eating cereal, first time saying mama. 

I still remember the first night Grace slept through the whole night, because neither of us could decide who had to go and check to make sure she was okay in the morning. This time around, we have a video monitor, so I think we're good to go when Charlotte decides she's no longer a party animal in the middle of the night.

And so while many of those "firsts" are not necessarily our first time with babies, it is certainly a new experience for me raising sisters. 

Although I have three wonderful sisters-in-law and lots of friends, I never had a sister of my own. I am lucky to have a sweet younger brother, who has become one of my closest friends as an adult.

But if anyone were to ask me when I was a child, I would never have thought Johnny and I would be close friends ever in life. We knew how to push each other's buttons and fought what seemed near constantly. But I don't think I would trade him for anything.

Once Kyle and I got married, we knew we wanted to have more than one child. Both of us are so close to our siblings, and we wanted our children to have that experience too. It hasn't turned out exactly the way we planned, but I'm so glad that Grace and Charlotte will have each other.

When we brought Charlotte home from the hospital, and laid her next to Grace on a blanket, sometimes Grace would smile and sometimes she would completely ignore Charlotte. It's hard to know exactly how much Grace comprehends about having a baby sister, but I like to think she's pretty proud of her.

As they lay there next to each other, I began to wonder what Charlotte's future would hold. I think all parents do that with new babies. Would she be a good student? Would she want to play sports? Everyone keeps telling us what long fingers she has, and that she would be a good piano player. And then my heart skipped a beat. People told us that exact same thing when we brought Grace home. Kyle and I even talked about whether or not Grandma Kim would be able to give her piano lessons. Now, Grace couldn't even hold herself up on the piano bench, let alone reach the keys.

I also struggled watching Charlotte kick her arms and legs (more like flailing them) around Grace. Would Grace wonder why her little sister could move around so much and she couldn't? My good sense tells me that Grace probably isn't able to think in terms like that, but I still worry sometimes if she wonders that it's not fair.

It's hard at times when these thoughts take over my mind. I wonder how many years Grace and Charlotte will have together, and even if Charlotte will remember her time with Grace.

But then I stop and do my best to refocus. This is what I do know. Charlotte is going to be a great friend to Grace. As she gets bigger, I know she will be the one to bring her toys, read her stories and best of all make her smile and laugh. Grace has always loved being around kids, and I feel like Charlotte will be her best friend, even if they can't talk to one another.

And I know this. Grace will teach Charlotte more lessons in her lifetime than I have learned in mine. She will help Charlotte learn to be compassionate and kind to everyone, even those who are different. She will teach her patience when Charlotte has to wait if mommy and daddy are helping Grace. And she will teach her that love is the most powerful gift of all.

I envision that Grace and Charlotte will have a language all their own and be able to communicate with one another without ever saying a single word. And that's the true bond of sisterhood.

Raising Awareness

Internationally, Rare Disease Day is celebrated on Feb. 28, and last year, we worked hard at trying to raise awareness for INAD, but helping to bring attention to rare diseases in general. This year, we had a ten-day-old newborn, and weren't able to do as much, but raising awareness for this disease continues to be a top priority for us.

We are so grateful to everyone who helps us meet that goal, by wearing gracelets or T-shirts, sharing our story or blog or asking us to speak about our journey. This year alone, we have had several opportunities, and we are always pleased to be asked.

Hiltopper Wrestling Team

Our first chance this year came in January, when the Hillsboro High School wrestling team contacted Kyle and asked if we could bring Grace to their last home meet of the season because they had a donation to INAD research. Kyle covers the team as part of his duties at the paper, and really enjoys writing about wrestling.

Kyle and Grace pose with members of the Topper wrestling team at their last home meet of the season.

Just before Hillsboro's first match, the team came out and gave a $250 check to Kyle and Grace. After accepting the check, Kyle had a chance to tell the team thank you and share a bit of our story. While most of the Hillsboro fans have heard it a time or two, fans of the other two teams had not, and several even stopped by to talk to us on their way out. And every chance we share our story helps win the fight against INAD.

Nokomis Women's Club

Late last fall, Margie Eisenbarth asked if we would be willing to visit the Nokomis Women's Club in either November or February to share our story with members of her organization. The Nokomis Women's Club had already donated twice to INAD research, so they knew a bit about our story, but we were thrilled to be able to visit in person and thank them for their generosity.

Grace hung out with Grandma Susie while I spoke to the group.

When the date of the meeting rolled around, Kyle ended up having to cover regional girls basketball, so mom rode with me and Grace to the meeting.  I asked Margie exactly what she wanted me to talk about and for how long, and she said I could share about our fundraising efforts as well as a bit more about INAD for about 20 to 30 minutes.  

Grace got some goodies too, including a new Nokomis hat!

That's a long time to talk, and I was nervous at first, but once I started talking, I think I talked their ears off.  I started at the beginning and how we learned that Grace had INAD, and talked about how much money we had raised over the past two years.  Their group had already made two donations of a couple hundred dollars each, and made another contribution for $250 after our presentation that night. One thing I shared is that although our communities have helped us to raise over $130,000, most of it has come in donations of all sizes, but that it all adds up fast. Through everyone's generosity, we will continue to search for a treatment or a cure.

Morrisonville High School

For the third year in a row, our family was invited back to Morrisonville High School to talk to biology students about genetics.  It started right after Grace was diagnosed with INAD and teacher Janet Walch asked Kyle if she could show her students a photo of Grace. He offered instead to bring Grace to meet the students, where she was immediately adopted by the student body.  

Hanging out with Morrisonville students.

Grace definitely loved all the attention!

So happy to be part of the Mohawk family!

Grace had big smiles for some of her favorite Morrisonville teachers!

To date, Morrisonville has raised more than $5,000 for research through penny wars, baseball games, bake sales and more.  We always love to go back and talk to the students about the genetics behind INAD. This year, they had been studying in vitro fertilization, and had questions about our journey.  The kids always ask good questions, and they love to see Grace.  I love to watch them come up and talk to her before and after the program.  She just lights up when the kids come to talk to her.  And we feel so blessed they have adopted her into the Mohawk family.

Lincolnwood Lady Knights Volleyball

Another longtime part of team Grace is the Lincolnwood junior and senior high volleyball teams, who were some of the first to start doing fundraisers for INAD research. At the time, Kyle's cousins, Kayley and Kensey were part of the junior high team, who started doing "Serving for Grace" fundraisers in between games.  That first season, we made it to a couple of games and Kyle even had a chance to show off his serving prowess.  

Kyle and Grace got to be in the team photo after the Lady Knights won sectionals.

Just this week, Kyle and I took both girls to see the eighth grade Knights win their second consecutive sectional championship. Grace was all smiles to see the kids, and they gave us a $200 check from this year's "Serving for Grace" fundraisers throughout the season. We wish them the very best of luck at state this weekend!

Over the past two years, both the junior and senior high teams have continued their "Serving for Grace" fundraisers, and the high school team has even added Volley for Grace awareness nights with several other local schools. In fact, this fall, they will join forces with the Hillsboro team to host an 18-team tournament, called "A Grace Filled Tourney," and we can't wait to be a part of it!

Upcoming Events

There are still plenty of chances this year to join Team Grace and help us raise awareness for INAD. 

Currently, members of the Litchfield High School Student Council are selling temporary license plates in the state of Illinois for $30, sporting Princess Grace. They are also selling baseball shirts for this year's Montgomery County Baseball Tournament on April 15 at Nokomis High School. 

Check out the newest Grace shirts, now available at Litchfield High School!

This is the second year they have done the license plate fundraiser, and we love driving around with Grace on our license plates. Thanks to all the kids for helping out!

The following weekend, Kyle and his beautiful girls will be attending the father-daughter dance at Lincolnwood High School, which raises money for a scholarship in Grace's name for Lincolnwood seniors and alumni.  It will be so much fun to see all the little girls dressed up and dancing with their dads, and I know Kyle will look forward to dancing with Grace and Charlotte.

And don't forget to mark your calendars for this year's Grace Cup senior soccer all-star game on June 3 in Raymond and the second "A Grace-Filled Journey 5K" on September 2 in Hillsboro. Both in-person and virtual participation will be included in the 5K race.

For more information about any of these events, follow us on Facebook at "A Grace-Filled Journey" or on Twitter at glhjourney.

mlh

He Said/She Said

It's been one week since our world was turned upside down and topsy-turvy in quite possibly the best way there is. To tell the world about our new addition, this special blog will be called "He Said/She Said," and give readers a look into this new adventures from both of our perspectives.

He Said

As I sit down to write this on Saturday night, Feb. 25, the thought never crossed my mind that I would already be a father of two for a full week. Grace was a week late and for some reason, I was sure that Charlotte would follow her older sister's lead.

We'll blame that for Mary and I's total lack of preparedness. I'm not sure how true it actually is, but that's what we are going to blame it on.

Grace was excited to see her little sister on the sonogram before we got to meet her in person!

But here we are, Mary holding one beautiful girl, while the other one sleeps in her room across the hall. The crib I was going to rebuild last Friday still lays in pieces in what will be Charlotte's room someday, hopefully before she turns 18 and goes off to college, hopefully to become a doctor or astronaut or some sort of hybrid of the two.

Our nurse wrote on our chart that our goal for the day was to have a baby!

You see, my grand plan was to build the crib that Friday after we got home from our appointment with Dr. Eden, Mary's OB for this birth. We already had a busy morning of PT with Grace, followed by lunch at the Cracker Barrel, where I ate my weight in country fried steak and oggled the cute little dresses they had in the store. Girls clothes are cute and I have a weakness for anything that would make either of my girls even cuter. This will probably come back to haunt me over the next two decades.

Meet Charlotte Grace Herschelman

After no problems with Mary's non-stress test, which is actually very stressful, we made our way to the sonogram room. The week before we had watched as the pictures on the screen showed little strands of hair sprouting up from the gray blob on the screen that was Charlotte's noggin. Grace didn't have much hair until well after she was a year old, so the thought of this was pretty cool and a new experience for our family. This week was different though. The person who did the sonogram took longer, measuring several different areas and trying to find different angles. I didn't panic outwardly, but inside, I was a ball of nerves, wondering if anything was going wrong.

Check out those inky feet!

The short answer was there wasn't… yet. Dr. Eden told us that Mary was significant lower on amniotic fluid than the previous week and said that he was going to send the results to another doctor to see what he thought. As he left us to make the call, he opined that we would be having the baby either that day or the next. I remember looking at Mary and us both having the same reaction. I won't say what I actually said, because this is a family blog, but needless to say I was shocked.

After a few moments of panic, I changed course and tried to encourage Mary that everything was going to be ok. We had to go admit her to St. John's Hospital, but first we thought we would go across the street to where my mom worked and let her know that her newest granddaughter had the patience of a gnat. This induced panic spell number two as my mom replied "Yeah, I kind of figured that would happen." That was followed by me grumbling at my mother for five minutes about why she didn't tell us this, but eventually I got over it and we continued our journey.

Getting some of those first few snuggles!

The plan was to get Mary checked into St. John's, then I would drop off Grace at my parents' house, where my sister Mikaela and her son Quincy were waiting for her. With Mary's parents in Florida, Mikaela was gracious enough to drive up from Arnold, MO to watch Grace until my mom and dad could get off work. I would then drive over to Hillsboro and get some things that we might need at the hospital (extra clothes, contact solution, whiskey, etc.).

At about 6:30, I got a call from Mary saying that the procedure they originally planned for 8 p.m. was moved up to 7 p.m., meaning that I had a half hour to get to Springfield before doctors sawed my wife in half and yanked a human being out of her. For all you know, I didn't panic. And if you believe that, I've got some beach from property in Pitman Township to sell you.

So with the urgency of a man with his pants on fire, I threw all of our things together, drove to my parents house, dropped off Grace's bag, took a piece of pizza that my sister had offered and hit the road once again. By this time 7 p.m. had come and gone, but Mary said that the doctor had been called away to another delivery. Still I felt like I was in Cannonball Run or Smokey and the Bandit, or some other Academy Award winning tome. I kept my speeding to a minimum despite the urgency and made it all the way to Springfield before things got weird again.

Grace was really excited to meet Charlotte.

As I drove in on 6th Street, everything was fine until I got almost to downtown, where police had the road closed off due to an accident. After nearly sideswiping a vehicle in the next lane, I managed to turn to try to detour around the blockage. I don't know Springfield that well, so this was the last thing I wanted and ultimately I found myself going the wrong way on a one-way street. Always a great way to spice up an evening. 

After turning myself around, I finally got my bearings and made it to the hospital with just minutes to spare. And by minutes, I mean roughly five hours. The C-Section that was going to start at 7 p.m. and caused me to nearly get in a head on collision actually began about 1 a.m. on Saturday, Feb. 18. This was the first time I had been in the delivery room, after opting out of Grace's birth due to fear that I would pass out and put two of us in the hospital. This time I felt more prepared and was excited to meet the little girl that had disregarded our carefully laid plans and procrastination.

Reading a new book to Miss Charlotte.

As the doctors went to work, I tried to help Mary as much as I could, keeping my nerves to a minimum despite the feeling that this was the most important person in the world to me lying on the operating table. Soon we heard someone say, "Look at all that hair!" followed by the sweetest cry I've ever heard. I got a quick peek at all 7 pounds, 20 inches of Charlotte Grace Herschelman before they went to hose her off and get all of her vital info. Once she was clean, I got to spend a few moments alone with her (with the nurses there of course), something I also didn't do with Grace. I watched as they measured her, weighed her and inked up her feet, thinking the whole time how perfect she was.

Our first family photo!

Once she was all done with her other duties, I was able to hold her by Mary and show her the miracle that was Charlotte Grace. It was love at first sight for the both of us and it hasn't stopped since. We've had some battles with car seats and sleep deprivation, but it already feels like she has been a part of our family forever. My employers/in-laws allowed me to take my two weeks of vacation off to be with Charlotte, Mary and Grace, something they offered the last time, but I didn't take advantage of. This time, not being able to pick up Grace, I knew Mary needed me to be there and I have jumped head first into my responsibilities with Grace Lou.

The first of many sisterly headlocks.

This is probably the first year that I haven't made it to a regional basketball game since I started at the Journal-News, but I had so much help from my fellow employees that the paper didn't miss a beat. I'll never be able to thank them enough for their generosity. There are still things I'm learning everyday about fatherhood and family life, but I know one thing for sure. These two weeks that I have been able to spend with my girls are special ones and it has truly showed me that above all else, family and God come first in my life.

Snuggling with my girls.

She Said

Last Friday (Feb. 17) started out just like most other Fridays do for our family.  We got Grace ready for physical therapy in Springfield, and sort of figured our biggest decision for the day would be where to eat lunch. Just for the record, we picked Cracker Barrel, and it was delicious.

After lunch, we headed over to the Springfield Clinic for what we thought would be a routine weekly check-up for the baby. Due to my "advanced maternal age," it included a non-stress test on the heart monitor and a sonogram.  I could tell something was up as the sonogram took about twice as long as the week before. And when it was time to meet with Dr. Eden, he told us it showed low amniotic fluid, and that we would be getting a baby either that day or the next.

Hanging out with Uncle Shane.

When he left the room to make some phone calls, I think the panic set in for both of us.  Each of us had meeting stories to write for the paper. Kyle had already talked about putting the crib together that night, and just in general, we weren't ready at all for Charlotte Grace to make her appearance two weeks early.

Cousin time with Katelyn, Kayley and Kensey.

But whether we were ready or not, we were going to become parents again.  Kyle and Grace got me all checked into the hospital and then headed back for home to pick up all those things that we never bothered to get ready for the hospital.  Kyle's sister met him at his parents' house to keep Grace, and Kyle ran back to our house to get what he needed.

Hanging out with Grandpa and Grandma Galer.

I chilled out in the hospital, and killed time texting updates to family members. The nurses at the hospital took great care of me, and told me they thought our c-section would be between 8 and midnight.  Then, they came back to say 7:30, and then again to say they thought it would be at 7. When I got ahold of Kyle around 6:45, he was still at our house gathering some clothes for me and Grace, and still an hour from the hospital.  I told him not to worry or hurry and that Charlotte and I would be in good hands.  Just to be safe in getting back up to Springfield and we would be waiting for him.

Well, as it turned out, our doctor had been particularly busy that day with deliveries, and Kyle ended up making it in plenty of time for the delivery, which was shortly after 1 a.m.  Because I had a c-section with Grace, they recommended that this time around as well.  And we were just so happy to have a happy, healthy baby that it didn't matter to us.

Hanging out with daddy at home.

The first thing the doctor told us was that she had a full head of hair, which was completely different from Grace, who was bald for nearly the first year of her life! After the nurses got her cleaned up, Kyle got to go over and check her out, counting all her fingers and toes.  Then they brought her to him to hold, so I could see her too, while they finished up with my c-section.

First bedtime story together.

Although, we had to wait several hours for the surgery to begin, once everything started, it sort of became a blur, and it wasn't long before we heard the doctor said, "look at all that hair!"  Since then, it has seemed like Charlotte has just always been part of our family.

Family and friends have blessed us over and over again!

We enjoyed visits at the hospital from family and coworkers, and have been blessed by our church family with meals throughout the week. Slowly but surely, Kyle and I are adjusting to life with a newborn again. One of these times, one of us is going to remember that we have to bring diapers with us when we go somewhere or that sleeping all night is definitely overrated.  

For the most part, we hang out in our newly refinished basement with the girls laying on a blanket next to each other.  Grace seems to enjoy watching Charlotte wiggle and squiggle, and watches over her as she sleeps, seeming to enjoy her role as the protective big sister.  I know it will be an adjustment as we find a balance between taking care of both girls, especially when Kyle goes back to work.  But we have been so blessed to have the help of our families, who we know will be there every step of the way.

First Thursday lunch at The Ariston!

We know there are some big challenges ahead on this Grace-Filled Journey, but we have spent the last week, trying to live in each and every day, enjoying all the time we have with both our beautiful daughters, who are already such a blessing in our lives.