Our First Christmas Letter

Before I began this blog, the only literature you would have read about our lives came in the form of our annual Christmas letter. I started writing them the year after we got married, and I think I've sent one out about every year since with our Christmas card. You may never read them, but I enjoy the annual updates and photos from people when I get them in the mail.

I just discovered that I still have all of these letters on my computer. So guess what? You can read them all. It'll be a little snippet of our last decade. Keep in mind, I do try to keep an upbeat tone in these, no matter what REALLY went down that year.

Here is our First Christmas Letter - December 2004

One year down, 99 to go (or something close). Yes, November 22 marked our first year of wedded bliss…and blissful it has been. We will spare you too many of the details but thought you might be interested to know just a few. It’s been an eventful year with a new job, home, and family members.

First and foremost, it is no longer just the two of us. Our young son joined us in January, and he is simply the most adorable pup you will ever see. We’re not kidding. Our little Jack Russell’s name is Max, and we only hope that our children will be as cute and obedient.

We’re also proud to be Aunt and Uncle again, as Adrian’s brother and sister-in-law gave birth to their second beautiful daughter in August. We hope to follow in their footsteps one day, but we’re very patient about that.

In March, Julles was blessed to land a job that utilized many of the skills she gained during college. Though she never anticipated working in the construction industry, she is now happily employed as a Marketing Coordinator for Nason Construction, Inc. in Wilmington.

We still lived in good ‘ole Greenwood for a while, but the long commute encouraged us to pack our bags and move an hour north in August. We rather enjoy our third-story apartment in Bear, Del.

Adrian still owns his own business, APQ Painting, but now has the longer commute. For most of the past year, he’s been acting as assistant superintendent as well as painter for a townhouse project in Easton, Md.

That’s probably enough details for now, as we know you need to get back to baking or wrapping gifts or other holiday preparations. We truly hope that all is well with you and that you have a blessed Christmas!

Love,

Adrian, Julles and Max  

 

 

 

Meeting Santa at School

She wants a Purple Pony for Christmas. At least that's what Adria told Santa in her pre-school class today. Not sure where that came from, but I guess I should go hunting for one this weekend! I'm not 100% sure, but I think this may have been her first time willingly sitting on Santa's lap - her teacher's husband did a super job playing the part :) And some high school assistants made cute elves.

I think this was her first time actually being willing to sit on Santa's lap

One of the surprise blessings to returning to Delaware is that the state has a great pre-school program for children with developmental delays. It's part of the local public school and is free for children who qualify with an IEP (Individualized Education Program).



Adria in circle time at pre-school working on the letter Q this week.

A short bus equipped with belted booster seats comes to pick up Adria every weekday and takes her and other qualified children to their special classroom in the local high school. For 2.5 hours in the afternoon they get lunch and learn letters, seasonal facts and many other things in their "Interest Areas." It's the perfect amount of time for her and Dad, and she loves it.

Her three teachers pour into the 24 children in her K-4 class, and I've been impressed with all they have taught her. Not all the children have an IEP, but those who do get individualized therapy times once a week.

Adria gets physical therapy, where she is currently learning to balance on one leg and try to walk up steps without needing to hold onto the railing. It's been great to see her progress over the year when little things like being able to step up on a curb are huge triumphs! She's a trooper.

Today, parents were invited to stop in and watch our children meet the special visitor before Christmas break. It's fun to watch a group of 4 and 5 year olds as Santa enters the room, and they one-by-one sit on his lap and tell him what they want for Christmas. Each child was given a gift, a box full of art supplies. I found out that these were provided by the local Lion's Club. How sweet!

It was a fun way to celebrate the last day of school for two weeks. And I was thankful I had the time to stop in and participate before running to a home closing. My first two home sales at my new job settled on their new homes this week. Yeah!

That's what I wanted for Christmas.

Blessings visible with a day at the Childrens Hospital

Today I was reminded again how blessed we are with our little Adria and how different life could be.

We packed up the girls early and were on the road by 8 a.m. to get to A.I. DuPont Hospital for Children by 9:30 a.m. It was time for Adria's bi-annual visit with various doctors in the "Spinal Dysfunction Clinic." Because spina bifida impacts so many different areas of the body, the hospital coordinates times when the various specialist come together in one area to see their patients with similar challenges. It works well but it means that we sit in room for a couple hours and typically see at least seven doctors, physician's assistants, physical therapists, nurses, etc.

As we sat in the Rainbow module waiting area before her appointments, I saw a young man in a wheelchair and his father. He had large shoulders and a thicker mid-section with short, lifeless legs hidden under baggy pants yet he was aware and cognitive, all tell-tale signs of spina bifida.

I said hello and introduced myself asking his name and what grade he was in. Ninth grade...he just started high school. That's a rough time for anyone, but I couldn't help but think how much more difficult it is for this young man. I almost felt guilty saying that my daughter has spina bifida too, as she went stomping past to go look at the train set.

His father asked what level she had, meaning where was it located on her spine. I said the L-4/L-5 area. He seemed surprised saying that was the same as his son's spina bifida level. He asked, "It wasn't myelomeningocele was it?" There's a question I almost never hear.

"Yes, she was born with myelomeningocele with her spinal cord and a sac protruding from her back," I replied. Truly, I think he was almost in shock. He said it's amazing how different she can be with the same level of spina bifida. Yes it is, I thought.

We chatted for a few more minutes about things like catheterizing, bowel management, shunts, and surgeries. All things we understand and experience yet very rarely have the opportunity to talk with other people who know exactly what we mean. And then Adria was called back.

Adria did great. It's wonderful that she can now stand barefoot (with mom's help) for her height to be measured. She's 3' 2" tall and almost 42 lbs. That's pretty short for her age, but you'd never know without other kids around.

She showed off fairly well for the doctors, and they were pleased with her progress saying she looks great. The best thing we had to share was that the bowel program we have in place now seems to be working to keep Adria's diapers clean most of the time. This was a big concern of ours during our last appointment with the clinic in May. Yeah for progress! But they were quick to warn that this is ever changing with their spina bifida kids, so be prepared...

They also asked how easily Adria tires when walking. She can go fairly far, about 1/4 mile, but definitely couldn't make it through a walk at the mall.  They suggested we might start thinking about getting her fitted for a wheelchair at her next visit...it can take 6-8 months for one to come in after ordering. This discussion was minorly alarming to me because I've been so pleased with Adria's progress, I just didn't think we'd be talking about a wheelchair. The doctor assured me that many of the childrens' wheelchairs collect dust and are only on-hand for major outings like a trip to Disney World, once they've outgrown a stroller. We'll see I guess. I'm in no rush for this. We still have a jogging stroller and a double stroller that work just fine when needed.

But as I pondered the possibility of a stroller, I thought about that young man I met earlier. For him there was never any question, he would need a wheelchair. He has almost no feeling in his legs. He has the same "birth defect" at the same level as my daughter. He is a special boy and I hope and pray the best for him.

I just realized how very blessed Adria is. She is a little miracle. She is amazing.

Adria helping to put on her braces

Johanna being like big sissy and taking her shoes off...

The new hospital addition is coming along nicely! Can't wait to see it.

Adrian's Christmas Wish...IN HIS WORDS

This week has been a rough one for Adrian. There's no quick, easy explanation why but there are just times that it's more difficult to cope with what his life has become. He had a look in his eye the other day that made my insides churn. It's an almost haunted look that I have seen many times over the last four years but not so much recently. We fear the worst will happen when he is feeling this way but then remember the seizures have often come when he's feeling totally fine, this doesn't have to mean anything.

It just makes Adrian's Christmas wish much different than most. As he shares here...IN HIS WORDS:

So it’s that time of year again that’s filled with the hustle and bustle of travel and family, of food and friends, of shopping, 50% off, and free shipping. The time of year for the giving and receiving of gifts, whether it be a warm hug and genuine smile or a new car, each of us are secretly and vocally wishing for that one or many things that we think will make our life happier. It’s that special time of year for hope and joy and of peace on earth good will to men. It is also the time of year to think; to think of the miracle that this season represents and to think of others more than usual as we find ourselves sending and receiving Christmas cards from friends and family we don’t often talk to.

This season I find myself thinking of the thousands of others who also struggle with epilepsy, some of whom are my friends. And my heart breaks for all those who live under this constant cloud of “what if”. I have to be honest and say that as I think about the miracles that this season represents, the miracle of Jesus’ birth and the angels appearing to the shepherds, that I am struggling with anger and hopelessness instead of being filled with the hope and joy of Christmas. Because for myself and the majority of those like me there is no hope of a visible miracle since there is nothing visibly wrong with us.

We are not blind so there is no sight to be restored and we have no cancer cells to go into recession. There is nothing that can be found to show that a visible healing has happened because there is nothing visibly wrong with us to heal. My doctors have, for some reason, been very clear with me that many seizure victims can go 10, 20, even 40 years seizure-free and then have them start again. For each person that suffers from seizures, each person’s situation and severity of attacks are different than the other persons, but with the rare extreme cases like me, living with seizures is living with a death sentence that can be carried out at any moment. The one thing that we all have in common is that we now have to carry this burden the rest of our lives with no assurance that it will ever be removed.

So this Christmas I find myself thinking of all those who have to live with that and wishing there was more I could do for them. If you know someone with seizures or any other physical struggles take time this Christmas season to reach out to them and let them know you care. Let them know that they matter to you, that they are important. A picture is sometimes worth a thousand words but in this case a Christmas card isn’t enough. Take time to make a phone call, take them to breakfast, or just give them a hug, or two, or three.  Knowing people care is the best medicine there is.

Prior to four years ago when it came to this time of year, the gifts I wanted were things like a new TV, a sound system, or head phones, now I just don’t want to go to the hospital. I want a Christmas not marked by a seizure, a ride in an ambulance, and all the memories that go with it. I want a Christmas spent with family watching my children play and my wife laugh not cry. I know that this wish can’t be found anywhere for 50% off and it won’t come with free shipping but I do know that it will definitely make my life happier. So here’s to hoping that this Christmas wish will come true.

Every Christmas card has a Story

There are very few areas in my life where I can claim to be organized, but I do fairly well with my addresses for Christmas cards. They are saved in a label format on Microsoft Word, so all I have to do is go through the file and update addresses, add or delete names based on who we've met that year or lost contact with, and then print. Stick the labels on the cards and Presto they're ready!

It works great, but it does make me think how annoying we must be for making you change your record of our address every year for the past five years. Any of you who've sent us mail have probably about given up on trying to keep track of us! And I don't blame you; trust me, this wasn't all planned.

But this year it really struck me as I went through the list of names and addresses, that so many of us are going through life events that are "unplanned" - not that we could possibly plan out life. There were many names I had to delete, some because they are no longer with us on earth and others because of broken marriages or strained relationships. It made my heart sad to think of your pain.

We understand pain, but not all types. And I know that your pain is unique to you and your life experience. Whatever it is, it matters and is significant. Whether you lost your mother this year or your husband left you or you're not cuddling a baby that was supposed to be in your arms or you are alone again wondering if love will ever find you...your story matters.

So I prayed for you. Though my cards may feel impersonal, since I didn't hand write your address or even sign our name (it's printed on the card), I thought of you. As I stuck on the label, stuffed our picture card inside, placed the stamp and sealed the envelope, I said a short prayer.

If there is anything I am convinced of or anything I have learned over the past few years, it would be that we are all going through something. Big or small, there is a pain in our heart. And so often it is held in secret. But God knows. He sees. Whether you feel that or not.

Much of the reason why I decided to share our journey is to offer hope that you can survive the pain and the daily grind and keep going in the face of uncertainty. And while Christmas should be a joyous time, for some it can make the pain more acute. For three years straight, Adrian had a seizure within a few days of Christmas, robbing us of much festive joy.

As you open your Christmas cards this year and look at the happy smiling faces, realize there is much more to their story. And whether you receive a card from me or not, know that I appreciate you and that you care enough to share in our story.

Whatever is on your heart this season, let's remember that at Christmas we celebrate the life of Jesus. He came to earth to live as a man, to experience our pain, and to carry our burdens. His Story is the greatest of all!

My Water Broke in Wal-mart and a Successful VBAC

For some, the first two years of a baby's life fly by, but I think about all that happened since Johanna's birth and it seems like a long time. She was born in Indianapolis, turned one at our Virginia home and now is two in Delaware. She was born the day before her December 3 due date, but that was actually a surprise to me!

My mom flew into Indianapolis on November 30; I picked her up but went back to work that day and ended up working until almost 10 p.m. that night to sell one more new home before going on maternity leave. I don't advise this, but I did end up being the top selling Indianapolis Sales Rep that last quarter, in spite of the fact that I was on leave the last month of the year. My pregnancies have actually proved to help my sales technique, but I'm still kind of annoyed at myself for putting in those late hours the day before I went into labor. Yes, I had a family to provide for but my priorities were somewhat out of whack.

39 weeks pregnant at the park in our Geenwood, Indiana community

I was completely unprepared when my water broke the next day. Mom, Adria and I had planned to pick up a few groceries, then relax with pedicures after lunch. Baby Girl had other plans for us.

We had just stepped into Wal-Mart when I felt it. Yes, my water broke right in the produce section of Wal-Mart! No, there was no clean up on aisle 9 or anything nasty like that. I'll spare you the details and just say there was no question what was happening and it's a good thing there was an extra jacket to sit on in the car!

It was such a surprise because I'd had a check-up at the OB the day before and there were NO signs this baby was coming anytime soon, in fact he thought it might be another week at least. There had been no contractions or dilation or any of that lovely stuff that precedes labor.

This was a first for me. I never labored with Adria, as a C-section had been recommended due to her spina bifida and the need to protect the "sac" protruding from her back as much as possible. For more about her birth, read here. My OB in Indy was great and fully on board with my desire to try a VBAC (Vaginal Birth After C-section), but he too was surprised when I called to say my water broke.

Once he confirmed this, he sent me straight to the hospital for the baby to be monitored as there can be complications with a VBAC and I would need to deliver within 24 hours. He also asked me if I'd be willing to go to a hospital that I had not planned because he had a mom laboring there already and was concerned about not being there for one of us if we were in separate hospitals 15 minutes apart. I saw the value in this, though I was disappointed to not deliver in my hospital of choice. It ended up being a good thing because we both delivered within an hour of each other.

We made a quick stop to get some lunch before going to the hospital because I knew they wouldn't feed a laboring mom, especially one who was at risk of needing a C-section. But, I did not have my hospital bag packed yet (I'm a tragic procrastinator...don't wait this long if you're pregnant!), so my dear husband had to pick out some clothes and supplies for me and baby and bring to the hospital. This is not ideal, folks, but he did okay.

Adrian was actually working 45 minutes away that day as this was during the brief period when he'd returned to work. He left work and was able to be with me as I labored, while my mom watched Adria at our house. I laid in the hospital bed with monitors on my belly for hours before I really felt contractions, but they came and I had the "joy" of experiencing labor pains. Much of the night was a blur as I felt almost constantly faint with aches and pains. I have a low pain tolerance and a history of passing out (yes, I fall down too!) so I had no preconceived notions that I would go through delivery "all natural."

When midnight rolled around and I was still only 3 centimeters dilated, it was time for Pitocin to kick things into gear. My OB was concerned about the labor progressing so slowly, but I'd heard horror stories about how this drug causes extremely painful contractions and I was already feeling fatigued. So I said, bring on the epidural if we're starting Pitocin!

In my experienced opinion, an epidural is a wonderful thing! So what if I could barely walk the next day? Kudos to all you amazing women like my mom, mother-in-law and sister who collectively gave birth to 15 children without one epidural...but as for me, I took the "easy" road on this one. For the next three hours, I literally slept through hard labor. I was surprised once again when my OB checked me just before 4 a.m. and said it was time to push! I thought I had several more hours based on how slow things had been going but that Pitocin did work. I will add that there are new studies out this year about some possible risks of the drug, but my experience is that it helped things along and prevented another C-section.

For 45 minutes, I did controlled breathing pushes at the guidance of my OB and wonderful doula at each contraction. There was a little trouble getting baby girl out, but at 4:44 a.m. on December 2 Johanna entered the world!

She had a precious cry and Adrian called his parents so they could hear it. Another three weeks would go by before they'd have the chance to meet her. I felt so incredibly thankful to have a chance to deliver a beautiful, healthy baby girl!

And then I heard the sweet tune of "Twinkle Twinkle Little Star" over the hospital speakers; they played it every time a baby was born at St. Francis Hospital. Welcome our little star, Johanna Belle!

 

 

 

Our Adventure-seeking Baby Girl is 2!

Yesterday our little Johanna turned 2 years old!

Sometimes I can't stop kissing her precious little cheeks and other times I want to bop her on the head. C'mon, you know you feel the same way if you've had a toddler.

From the start she's been so different from her older sister. While we cheered Adria learning to army crawl 3 inches on her first birthday, Johanna was already running around the house by the time she turned one. On the flip side, Adria had memorized and could recite the words of a few simple children's books by her second birthday, while Johanna has really only mastered a dozen or so words that mainly just we can understand. She always jabbers, it's just not intelligible most of the time. Vocabulary will come, she's too busy adventuring all over!

Johanna is a constant ball of energy every waking moment. It's stunning really. But at least she'll often take a 2-3 hour afternoon nap for Daddy. Every day she wants to wear a "jesh", that's a dress, and may have a major meltdown if you deny her this. The dress is critical for her dancing, this occurs anytime music is playing. It's generally just spinning in circles but she's learning a few new moves, one being a bottom shake. Hmmmm.

Shoes and socks are never worn indoors by her, this is unacceptable. She would be happy to live on a diet of cheese, strawberries, milk and Smarties with the occasional yogurt and granny applesauce. Bows, clips, hair ties...what are those? They rarely stay in long enough to keep her bouncy brown hair out of her eyes. She loves babies and animals and says "ahh coot" when she sees either. Thrills and speed get her giggling, but once it stops...beware. She doesn't actually walk, it's more of a skip, hop, jog around the house.

Her expressions are endless. Her frown, troubling. Her strength, impressive. Her smile, infectious.

In her 2 short years little Jo-Jo has been known to:
- eat a tub of butter
- dump sister's medicine on the carpet
- poo in the tub, multiple times
- draw on our friend's wall
- empty the kitchen cabinets then hide in there
- enjoy the taste of dirt
- spew at the most inconvenient of times
- throw away her sneakers and other useful items
- dump what seems like gallons of water on the bathroom floor
- secretly hide away in the pantry with a bag of chips
- steal away a pack of oreos right from under my nose
and dozens of other things that demand the common phrase, "No Jo!"

That's our baby girl! Are these things normal??? Hahaha! We never experienced this kind of stuff with Adria. But it holds a preciousness all it's own (when you look back on the moment :)

We are so thankful for this little gift given to us before Christmas two years ago. And we are excited to see what God has in store for our beautiful, adventurous little girl!

Our happy little Jo-Jo

Mommy and her new baby on December 2, 2011