A New Home. A Lost Baby.

It was a freezing cold January, much like the last week, as we unloaded boxes into our new home in Greenwood, Indiana three years ago.

After living in a little, two-bedroom apartment for the past eight months, we were eager to get moved into this beautiful 4 bedroom home. It was almost 2,700 s.f. with a full brick front, 3-car garage, huge master bedroom suite, and a beautiful kitchen with 42" cherry cabinets. The home sat in a cul de sac of a 200+ home community with walking trails, a great playground, swimming pool, and just 20 minutes from downtown Indianapolis. And you know the best part? Our new mortgage payment was LESS than our rent payment at the apartment! That is the beauty of real estate prices in the Midwest.

Our Greenwood, Indiana home under construction.
Below, Adria in front of our Indianapolis apartment.

Plus, we built the home with the company I worked for and I took advantage of one the employment perks to get a sweet home discount earned after 18 months of working. We had excitedly watched the progress of the home be built in less than three months.

We were especially excited as we learned during that time that I was expecting our second child. We decided which room would be Adria's and where we would put the new nursery. Of course, we made plans for a comfortable guest room to welcome our families when they traveled the 600 miles to visit.

However, one week before our home was completed, our excitement was dampened. I lost the baby I was carrying...

On a mid-January Monday I went to the doctor for my 10 week baby appointment feeling great. It was just supposed to be a simple check-up, so I didn't make arrangements for Adrian to join me. I was surprised when my OB wanted to do an internal ultrasound after pressing on my abdomen and saying that my uterus felt small. (P.S. consider yourself lucky if you've never had a transvaginal ultrasound). As we looked at the image on the screen, there wasn't much to see in my opinion. There was the tiniest little peanut he pointed out then asked more questions about my last cycle and all that good stuff, to check my dates.

I should have been 10 weeks along with a due date of Aug. 7, but I was only measuring 6 weeks gestation. When he said that, I kind of knew. He was a great OB, but I'll never forget his words, "You have definitely had a pregnancy event. However, I'm not optimistic that the pregnancy will continue."

And with that a few tears slipped down my cheeks, and I wished that my husband was there. But I was afraid I'd lose it if I called him, so I scheduled a follow-up a week later and drove to our apartment. I turned on the Christian radio station, trying to remain calm, and then I heard this song:


You've probably heard it before, and it's most likely touched your heart with the powerful words,
"What if your blessings come through raindrops? What if your healing comes through tears?"

Yes, I had to stop the car and cry but it was just what I needed to hear.

Exactly one week later on Monday, January 17, 2011 I penned these words in my journal:

I lost my baby today. It was a painful, bloody experience. Most of my tears over the loss fell last week when I first learned of the possibility. Somehow, I just knew and it hurt.

I had gone to work and sold a home on Saturday to my friends, then Sunday I had to leave work after an hour. I spent the rest of the day and overnight in a great deal of pain, but I was thankful that a friend who had recently experienced her own loss prepared me for what was likely going to happen.

Since mainly only our families knew about the pregnancy, we did not broadcast our loss. Our Indiana friends provided support, and my mom flew in later that week to be around to help as we closed on our new home and packed up boxes. I was so thankful she was able to come.

There is an unexpected Part 2 to this story that we will share. But know that even through the tears we saw blessings, especially when I became pregnant again a couple months later and now have another cute little blue-eyed girl sitting here saying, "Mommy."

Kissing my little blessing, baby Johanna born Dec. 2011

Folic Acid is critical for Women of Child-bearing Age!

Last night, as we were getting ready for bed my five-year-old daughter asks, "Why do I have to sit on the potty every night?" I explained that everyone has to go potty every day to get rid of some of the food we eat and for her it works best to do it at night.

Because she was born with spina bifida, the nerves on her lower spinal cord never formed properly in my womb, so she has almost no control over her bladder and bowel function. This year we've developed a good "potty" routine that involves giving her an Enemeez, a mini enema, every night followed by 15-20 minutes of sitting on the potty.

After thinking about my response for a minute, Adria asked me this question. "Mommy, does anyone else in my world use Enemeez?"

I thought it was so precious how she worded that. She seems to be gradually understanding that certain things are different for her than others, but it doesn't seem to bother her much. In her world, no one that I know of uses Enemeez. However, we have met over a dozen people with spina bifida in her lifetime and most of them require crutches or a wheelchair for mobility, while she only needs leg braces.

Overall she is very healthy, but spina bifida does have a big impact on her life. In fact, it reportedly impacts nearly 166,000 Americans and about 70,000 of those have the severe type like my daughter called myelomeningocele.

This image shows what a baby with Spina Bifida (Myelomeningocele) looks like at birth.
Like most of these babies, my daughter had surgery to close this opening within 24 hours of birth.

Spina Bifida is one of the most common permanently disabling birth defects. January is actually National Birth Defects Prevention Month, and I'm a little late but January 5-11th was Folic Acid Awareness Week. I'd like to take this opportunity to share a very important message with all of you, but specifically those women of child-bearing age.

Though I love my daughter dearly and wouldn't change a thing about her, I would encourage any woman to do the best she can to prevent this from happening to her child.

Why does Spina Bifida happen?

While there are no specific known causes for spina bifida, it has been found to be most common among Hispanics and people of European decent and affects more female babies than males. According to www.spinabifia.net, obese or diabetic mothers are at a higher risk (I am neither) and some anti-seizure medications may be a factor in spina bifida occurance. Studies also suggest that mom's prolonged exposure to high temperatures, like in a hot tub, early in pregnancy contribute to causing the birth defect.

An interesting fact that I recently learned is that Scotland has a higher rate of Neural Tube Defects like spina bifida than other European countries. This is somewhat significant as my mother's family is of Scottish origin, though there is no known history of spina bifida in our families.

How to Prevent Spina Bifida

Here's the important part! While there is no specific cause, there is a proven method of PREVENTION. That is through the intake of Folic Acid prior to pregnancy.

The American Pregnancy Association recommends the following:
Spina bifida is best prevented by taking 400 micrograms (mcg) of folic acid every day. Studies have shown that if all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%.
Folic acid is a water soluble B-vitamin that helps build healthy cells, but it does not stay in the body long. It is important that women take folic acid every day to help reduce the risk of neural tube defects. Since half of all pregnancies in the United States are unplanned, women of childbearing age – even if they are not currently planning to get pregnant – should take 400 micrograms (mcg) of folic acid every day to reduce their risk of having a child with Spina Bifida

Ironically, I remember reading in a magazine when I was a young woman about the importance of taking a multi-vitamin with Folic Acid, so I did. However, pre-natal vitamins usually have even more Folic Acid, around 800 mcg, and it's recommended that you take at least that amount daily when trying to get pregnant. I was not on a pre-natal vitamin when I got pregnant with Adria.

It's hugely important that you are taking this BEFORE YOU GET PREGNANT, because spina bifida and other Neural Tube Defects occur just 28 days after conception. That's right, by the time you know you're pregnant the spinal cord has already formed properly...or not.

Now because I have a child with spina bifida, I am 20 times more likely to have it occur again. Yikes! To significantly reduce this risk, I took 4 mg (or 4,000 mcg) of folic acid every day for several months prior to trying for #2.  I did have an early miscarriage first, but I became pregnant again and now have a super healthy two-year-old girl. Even when I'm not "trying" to get pregnant, I still take at least 1 or 2 mg of folic acid a day, just in case...

Special Alert to anyone related to my husband or me!

Genetics are a factor in the occurrence of spina bifida. Therefore, if you are in any way related to our family, you are by default at a higher risk of having this happen. Sorry about that BUT you should take extra measures like I do and regularly take high doses of folic acid, especially if you are hoping to have a baby.

This is still not a 100% guarantee to prevent a birth defect, but there is an interesting story behind the study proving that folic acid is important to this end. I encourage you to take a few minutes and watch it.

Give Babies a Chance

Having said all that, if you are like me and find yourself 20 weeks pregnant and learning after an ultrasound that your baby has a birth defect, give your baby a chance. The doctors will most likely ask you (several times) if you want to terminate the pregnancy. Please don't. Give your baby a chance. My baby is a beautiful gift and worth every ounce of extra effort!

Last summer, I met an incredible couple who had recently lost a child to Anencephaly. This is another type of Neural Tube Defect that is rare and significantly more severe than spina bifida. The baby is actually born without fundamental parts of the brain and skull, and almost all die shortly after birth. Though they knew this, the couple decided to carry the baby to full term and held their son for the short hour that he lived once born. Their story touched me as I cannot imagine that difficult experience.

A 2004 report from the Center for Disease Control claims that there has been a 27% decline in pregnancies affected by nueral tube defects (spina bifida and anencephaly) since the United States began fortifying grains with folic acid. That's a great start, but you should be intentional in folic acid intake as you prepare to get pregnant.

I know this is a lot of information, but I do hope that you take it to heart and share it with any friends or women you know of child-bearing age.

EAT FOODS HIGH IN FOLIC ACID AND TAKE A SUPPLEMENT

Now let's continue to get the word out!

10,000 Reasons to give Thanks

Today we want to Thank You! Our blog surpassed 10,000 views this week and we so appreciate you for being a part of that.

This is a very encouraging milestone. Even if 10,000 is not a huge number by social media standards (you know those photos and videos that can get thousands of likes within a matter of hours or even minutes), it is significant to us because it shows that many of you do care enough to take a few minutes and share in our journey.

After years of pondering it and months of seriously thinking about it, I started this blog last summer just after we had returned to Delaware. It began out of my heart's cry to make sense of the blur, both the crazy and the happy times of the last five years. It began as outlet for my love of expression through the written word. And it began because I needed to know you cared.

And then to my surprise and delight, the man who has faced the greatest struggle these last few years decided to share his heart and his story...IN HIS WORDS. And this has been a part of the healing process for my husband, though it can be difficult to bring dark times to light.

Together we share our story... as a young couple with the hopes and dreams of the future alive then suddenly stunned by our firstborn's life-altering birth defect and the dramatic arrival of Daddy's seizures. We have fallen many times as spina bifida and epilepsy have defined much of our lives since 2008, but we won't let them define US. Our story is so much more. We are a blessed family with two beautiful young daughters, a working mom, a stay-at-home dad and a thirst for adventure. We know what it is be broken, and we know what is to feel God's touch. There are many chapters we have yet to share and still more left to write as our story continues.

I sometimes wish that I would have started this blog years ago, but I know that in the midst of these times it would have drained me to give voice to the reality. Plus, it is quite difficult to find time to write but my current job allows me more time.  It's usually at 9:30 p.m. or 5:30 a.m. when I pull-out the laptop and begin typing. And sometimes, like when I started this in the morning, it's 3:00 a.m. when I can't sleep. Though I had a good excuse last night...I invited the little girls in bed for a sleepover with mommy and we stayed up late watching Tangled. They loved it, but I find sleep elusive when there's a squirmy girl on either side of me. They got so excited about sleeping in our bed, I figured we could make it a special treat. Trouble is, they wanted to do it again tonight, sorry girlies.

As I thank you for caring enough to read and share in our story, I want you to know that our story is not more significant than yours. Each of you has a story, a struggle, a history and a hope. It would be an honor if somehow our story could help you as you write yours, whether on a page or in the chronicles of your heart. I know I am regularly encouraged and entertained by many of your blogs or "status updates."

I especially thank you those of you who have shared a kind or encouraging word as we started this. Those words mean more than you know and make it worth the time and effort to continue sharing. You have given us 10,000 Reasons to be thankful and give praise.

It gives a whole new meaning and relevance to a worship song that has blessed me and likely many of you - 10,000 Reasons by Matt Redman.

Whatever may pass and whatever lies before me, let me be singing when the evening comes...Bless the Lord, O my soul.

Spina Bifida Conquers the bounce house

It was hard to believe she had the confidence to try it, but she did. Of her own accord and determination, Adria began to climb the very steep stair on a bounce house obstacle course yesterday. And when I say steep, I mean it was basically straight up and down with no incline. I didn't even want to climb the thing!

Fortunately, it was Toddler Tuesday at CoCo's Funhouse so it was fairly empty and at 5 years old, she was one of the oldest children. This gave Adria the opportunity to take her time and tackle this virtual mountain one slow step at a time. I was NOT right behind her, ready to catch her fall because adults weren't allowed in that one. I had to watch from the side and encourage her (while trying not to freak out!) Sure, she would have a super soft landing and most likely be fine if she fell, but she so rarely exhibits this much bravery, I was praying it would be a confidence boost for her.

Halfway up - steady now

Almost to the top!

And it was. She made it to the top after about 15 minutes of climbing. It was actually looking down the slide on the other side that really frightened her but with some coaxing, she came down and had a big smile on her face. So did Mommy.

Wow. I never would have taken her to a place like this a year or two ago. And I even wondered if it was the right thing now. But it was. She loved it. We had a blast together with a dear friend and her little ones!

Cutie Adria rockin' her AFOs and walker in Summer 2011

And of course her adventurous little two year old sister did too and ran circles around big sissy. I think of when Adria was Johanna's age. At 25 months old, she had just started using a walker to get around and it was the cutest thing. She used it for about a year when just shy of her third birthday she took her first steps without a walker. Let me tell you, this mama cried the biggest tears of joy the first day I came home from work to see her walk up and give me a hug!

Now, just over two years and hundreds of falls later, she continues to prove she has the gusto to get herself up and willingly conquer life's major obstacles! I was so proud of her yesterday.

The only trouble was that kids are not supposed to wear shoes on the bounce houses, but she did need them and her leg braces (DAFOs) in order to climb the obstacles as her ankles are weak without them. I quickly learned that it is a safety concern with shoes on because they can easily catch on the slide coming down. Plus, she wanted to be like the other kids in sock feet. So she spent the last half of our play time without her braces and had just as much fun, but didn't really do the climbing anymore.

Here's a video documenting her progress yesterday. From conquering the first small slide to hanging tight when kids plowed by her to the really big obstacles. She was hesitant about sliding again after that last tumble, but that's when the braces and shoes came off. We'll be back again soon!

Jan 20th - 3E Love's International Day of Acceptance

Embrace. Empower. Educate. Love Life.

This is the motto of 3E LOVE, an organization created by a spirited young woman and her brother with a vision to change the perception of disability. At the core of this growing movement is the "wheelchair heart logo." It is a symbol of love and acceptance.

The originator of this symbol was a beautiful woman named Annie who died unexpectedly on January 20, 2009. Just two years younger than me, she had not yet turned 25. Five years later, 3E Love has gained momentum and January 20 is now the International Day of Acceptance.

The 3E Love wheelchair heart logo can be seen in this image from their website, which is also my facebook cover photo.

Our family t-shirts arrived in the mail on Friday, just in time for us to wear them tomorrow in support of this special day. Naturally, I ordered Adria and I purple shirts, our shared favorite color :) I tried to take a selfie shot with the girls and me, but the one with the two of them on the bed shows off the shirts better.

As part of the International Day of Acceptance, 3E Love hosted a facebook essay contest requesting people to share what this symbol means to them. There are almost 300 submissions that you can read and vote for. I entered the contest and through that I am now in contact with an impressive teenage girl who was born with spina bifida at the same level as my little five year old. She also wrote an essay that encourages me and gives me hope that my daughter will continue to have that kind of spunk and vitality for life.

Here are both of our essays. You can vote once a day for the next five days!

3E Love Essay - Julleanna

“Do you want to terminate the pregnancy?”
That horrible question was asked of me at age 26 when I was 20 weeks pregnant with my first child. We had just learned that the baby girl inside me had a birth defect called spina bifida. She may never walk or urinate on her own and she would need several surgeries along the way. Life would be difficult for her and us. The doctors were offering us an “easy” way out.

But to me, the question came as total shock. Is our society really so unaccepting of differences and disabilities that I should be given the option of denying my firstborn life simply because her tiny body is different than mine? Not only is ending the pregnancy offered to parents of unborn babies with a birth defect, but in many areas around the globe it is regularly encouraged.

My answer to their question was a resounding NO! Today, my daughter is a beautiful five year old who loves going to school, playing dress-up, baking with mommy, and dancing at parties. Though many with spina bifida require wheelchairs, our little girl learned to walk with a walker and now has impressive mobility with her leg braces/AFOs. She accepts the fact that she’s not potty-trained like her peers. She is a socialite and excellent conversationalist, and I can’t wait to see the profound impact she will have on the world.
And I hope that it is an accepting world, ignoring her differences and simply noticing her for the incredible person she is.

I have only recently encountered the 3E Love symbol and am so encouraged by this “Empowered movement that Educates others to Embrace diversity and Love Life by seeing beyond abilities.”

When I was asked that question, I knew nothing about spina bifida and had little experience with special needs, but it is now just a part of our daily lives. It’s not always easy and convenient, but I love my daughter exactly as she is and she absolutely Loves Life!

One of the most significant messages that I hope is spread and shared through the 3E Love movement is to not only LOVE LIFE but also to GIVE LIFE to those with disabilities and birth defects. I hope that parents say yes to life and that the question of termination is taken out of the equation. As Annie, the creator of 3E Love, was able to show during her short life, disability does not mean inability. People with different abilities are critical contributors to our community, our country and our world. 
Your Vote is appreciated at http://bit.ly/1cB3FKx

3E Love Essay - CamoGurl

I’m Hope, I’m sixteen, I love animals, my socks never match, my favorite color is pink, I’m stubborn as heck, and I was born with Spina Bifida. I find it funny as I’m sitting here typing this, autocorrect has highlighted “spina” and “myelomeningocele”. That’s a prime example of how uneducated most of our society is about Spina Bifida, and most congenital disabilities. Well, I’m attempting to change that. I’ve been through a lot of challenges in my life but I’ve learned through and through, life goes on if you let it. And everything happens for a reason. The quality of life and civil rights has come a long way for people with disabilities.

But I’ll be darned if we’re done yet. Since around 4th grade I wanted to wear high heels like other girls and I was always told I couldn’t because AFO’s couldn’t be made for the alignment. Well, seven years later. After finding the right orthotist willing to give it a go, I finally got it. You have to have perseverance and determination with everything you do in life. Doctors don’t know best. If you want something, get it. Don’t let anyone ever tell you, you can’t. Can’t is a frame of mind. Not an unattainable action. So fight for what you want. And never budge. Being born with this disability has caused me to have to wear leg braces to help me walk, several surgeries for bone correction, and years of emotional trauma.

Entering into my teen years was a hard time for me. I knew I was “different” from most people, but I didn’t really even understand the disability I had. There are several things that are embarrassing to talk to your parents about, and this was one of them. I started researching on the internet to find any and all information I could get. I got some results, but it was all very clinical and not in depth at all.

That’s how I developed my organization CamoGurl, I want there to be a place for teenage girls with Spina Bifida to get real answers about their disability, their body, and themselves. I understand that a lot of what I expose on my website will come as a shock to those who don’t go through it. And influence their personal opinion of me. But I’m okay with that. The only way to create change is to make it. Growing up isn’t easy, and having a disability doesn’t make it any easier. But I want to help teen girls going through it by showing how through my personal experience I’ve learned how to camouflage into the rest of society, while being an advocate for change.

When I came across 3E Love I absolutely… loved it. Speaking out about all kinds of disabilities is the only way to change the societal perception of them. And that’s what the Wheelchair Heart Symbol represents for me. Change. And Change for the good. A person is a person. No matter what. And it’s time we step out of silence.

Vote for CamoGurl at this link http://bit.ly/1ahWVOz
Read more about this beautiful young woman at www.camogurl.com

Failed 2013 Resolutions...Try Again?

Without even realizing it, I was taking the advice that my husband shared in the last blog. Instead of just asking "Why" to life's challenges, I was trying to move beyond into "How do I move on from here?"

I saw the beginning to 2013 as a great opportunity to refocus and motivate myself. For various reasons, the year before was incredibly challenging for me, but mainly I think it was due to battling with post-partum depression. I had no issues with it after Adria's birth, but in spite of Johanna being a beautiful and healthy baby girl, my hormones played games with my emotions for much of the year. Though I tried to hide it from the public, Adrian had never seen me struggle so much to bring myself out of a funk. The only redeeming aspect was that it helped me to better understand Adrian and his battles with depression.

As I began to see the rainbow through the clouds, I put together a list of New Year's resolutions to guide my thoughts and efforts. I recently found the list in a notebook, followed by pages of notes about interviews and To Do lists for moving. I did not expect to fill the notebook with all that when I wrote the list on January 8, 2013.

Maybe the list was a bit over-ambitious, but I had reason to believe that many of these goals could be achieved with our lifestyle in Virginia. In the end, the last item on the list was really the only one that was achieved...but arguably that was the most important one.

Here's the list of my goals and dreams for last year, along with some explanation.

1. Sell 40 Homes - 5% of Region's total

2. Achieve Senior SMR status

3. Sell out of Cedar Run and move to Chesterfield community

• These first 3 goals all had to do with my job as a new home Sales and Marketing Rep with a large national builder. I had worked for this company for 6 years and in 4 different states. The Richmond region was truly dynamic with great people and was experiencing incredible growth, and I was hoping to be a part of their goal to sell around 800 homes in 2013. I was disappointed to have to leave so suddenly in April when we moved back to DE, but I know they did great!

4. Establish Regular Date Night with Adrian

• As a working mom, my dear husband can sometimes feel like he's not a priority with my work and my girl's needs always taking my attention. Time alone as a couple needs to be planned or it won't happen often. We are getting better at this with lots of family around now to help with babysitting.

5. Run 2 Half-Marathons

• This shouldn't have been too hard, since I ran the Indy 500 half-marathon in May 2012 (six months after Johanna was born) but I never really committed last year. I jogged regularly, but did not do a long, organized run.

6. Write - Housing Market Richmond Examiner

• I knew I wanted to get back into some writing and thought I'd try this route. Back in 2010 I had started a "Working Mom Indianapolis -Examiner," but things in life changed after the first few articles and that's where it ended. Though, I never signed up with Examiner.com, I did start this blog and have enjoyed writing again!

7. Attend Church 2x a month

• As a new home sales rep, I've spent the last seven years working 3 weekends a month. Yes, that gets very old, but it's necessary in this career. However, it made it very difficult for us to get to church regularly, though I did find a few great churches in Indiana and Virginia. With my new job, I do have off two weekends a month, so this has become an easier goal. You don't need church to be a Christian, but I have learned that my heart longs for the fellowship and corporate worship that church should provide.

8. Write a short children's book

• This is still on my list, and I think that I will get to this in 2014. I have so many ideas, it's just getting them on paper and then the work (which I dread) of trying to find a publisher.

9. Get Adria established with bowel program

• I actually feared this resolution the most. My precious little 4 year old, who was very capable in almost every way, could not empty her bowel properly (i.e. she's not able to poo like most of us). It was a stinky problem with no easy solution. We tried many different techniques last year, and we are fairly pleased with the success of our current routine. This is huge, because Adria is now 5 and we don't want her to be embarrassed by stinky diapers in pre-school. Now...my goal is to potty-train her 2 year old little sister by the end of spring. It'll be our first traditional potty training experience, and it scares me almost as much!

While I did fail on achieving most of this list, it doesn't bother me too much. As you know if you've been reading along these last few months, 2013 was another wild year for us with unexpected events and big surprises. Some were difficult and others were incredible. While I think it's important to set realistic goals in life, it's even more important to be flexible when the attainment of those goals gets out of reach.

As we sit on the horizon of 2014, I dare to be encouraged and hopeful for the good things to come this year. And just maybe, I'll get to some of those resolutions that I missed last year.

Did you set any goals or resolutions for this year? Or achieve any from last year? I'd love to hear about them!

 

Why and How...IN HIS WORDS

Prepare to be moved by my husband's words. At least, I was.

IN HIS WORDS...

WHY???? Why did this happen? Why is this happening? Why is it happening to ME? These are questions that each and every one of us can relate to and most of us probably never get an answer to. They are probably questions that we have been asking ourselves regarding one thing or another for most of our lives and regardless of the fact that we don’t get answers, we still keep asking them. Not only do we keep asking them, we really seem to get hung up on the importance of the ever elusive answers. Perhaps it’s because we think that if we knew why something happened it would help us deal with the fact that it happened.

When I was 18 my oldest brother by five years committed suicide. It came as a real surprise to us all because he showed no signs of that at all. Since then I have had at least five close brushes with death, we lost our dream house that we built, our first daughter was born with Spina Bifida, Julle had a dramatic miscarriage, I started having Grand Mal seizure’s, and those are just the things I can put in writing. However, we don’t consider our lives to be any harder than anybody else’s and often hear of other situations and think “man, they really have it rough”. I am just saying that I have had ample opportunity to ask the “why” question. Especially over the last four years during which we have spent hours on end and thousands of dollars to no avail trying to chase down why I am having seizures only to realize there is no hope of finding out.

So I began to wonder, why am I so obsessed with knowing why and would knowing why actually change anything? The simple answer is I want to know why because I think that knowing why will fix everything and I want everything fixed because I want my life back. A life changing event is called that because it’s an event that changes our lives, usually in a way we don’t like or understand. One of the greatest things I liked about my life was public speaking. Although it’s ranked as a person’s greatest fear, I personally love it but since the beginning of the seizures it’s a struggle to hold a conversation let alone do any public speaking. Seizures took my life and I wanted it back. That’s where the second question comes in and the simple answer is, no. Knowing why would not change a thing. Even if I knew why I had seizures I would still be on meds, I would still have memory loss, and my life would still be forever changed. Even if we knew why my brother committed suicide he would still be gone. Even if we knew why Adria was born with Spina Bifida she would still have to learn to live with it.



As I look at the past several years I began to see that perhaps the best question to ask isn’t “why” but “how”. Continuing to ask myself why I have seizures was only bringing on depression but when I began to ask “How do I move on from here?” I finally began to adjust to the new life that I found myself in. Asking “why” kept me living in the past but when I began to ask “how” it brought me into the present and opened the door to the future. I think that asking “how” helped me to accept the reality of what is and began to lay the foundation to being able to move on. Even though this is a hard lesson to learn I hope that it is preparing me to help guide Adria through the path ahead of her as she grows and begins to ask the unavoidable question of “why”. Because I know without a doubt that as she navigates through the “why’s” and into the “how’s” the stars will be within her reach.

Even though I no longer ask “why”, I don’t believe in forgetting the past. I live my life with fond memories of my oldest brother and that house will always be the first house that Julle and I ever built together. The life changing events that happen to us are meant to be a part of our lives and not to be forgotten or stuffed down but neither are they meant to drag us down or hold us back. Are you asking “why” or “how”?

- Adrian Seely

You want me to pay WHAT for my daughter to go potty?

There are over $3,000 worth of medical bills sitting on my desk that arrived over the last two weeks. Most of them came as a total surprise. This is not a good surprise.

It's upsetting, but I'm used to it by now. After five years of major medical concerns with my immediate family, I've resigned myself to the fact that even with insurance our medical expenses have been and may continue to be over $10,000/year on average. (I really hope it's less this year though!)

Yes, that is a huge number and impossible to budget for, but I try not to let it get me down because I know some families have it much, much worse.

But these recent bills did rile me up a bit. The biggest one was from our catheter supplier that I haven't used since last February and thought I was completely paid up on in October. They sent me a bill for about $500 last month, which I argued. But then this is the lovely bill just arrived in the mail...

That's right, Surprise we think you still owe us $1,322.74! Um...No I don't. Fortunately, it only took me a couple calls to them to resolve this and explain everything. And Praise the Lord, they agreed we don't owe this.

Now, they had better not try again next month!

But really, this catheter issue is a doozy. You may have read my post from September when I was so excited because I thought we had found a great solution to our costly catheter issue (Adria requires 5 disposable catheters a day to empty her bladder).

Unfortunately, I was terribly wrong. It appears they may cost us more than ever. We had started using a new company in July who initially told me it would only be $40/month after our deductible. I just got the first bill from them and they want...$396 a month after insurance! This is just craziness.

You mean to tell me that I have to pay almost $400 a month so that my daughter has the privilege to pee?

Add to that the $78 a month we pay for Enemeez, which are not covered by our insurance at all, but help empty her bowel and the $50+ a month we still spend in diapers for her, and the grand total is over $500 so that my little girl can go potty.

Am I the only one who thinks this sounds absolutely ridiculous???

But before you get riled up like me, please understand that I do not and will not accept this. I have already spent hours on the phone this week with both my insurance and the catheter supplier. We WILL work out a more reasonable payment. This momma does not back down and give in that easily. I've been through this before, and you won't get a penny out of me that I don't think is rightfully due. But once we do work it out, you will get your money.

All of that is with my insurance that I've had, but things are about to change. For better or worse, it's hard to say, but I am directly impacted by the Affordable Care Act a.k.a. Obamacare. Now that I am with a much smaller company that does not offer health insurance the same way as larger corporations, I signed up for one of the new metal plans in the private marketplace (Highmark BlueCross BlueShield.)

These are supposedly the same exact health plans offered by the federal government through Obamacare. Really, the only reason someone should even try to sign up under the Affordable Care Act vs. private insurance is to see if they qualify for the tax credit. From what I've read about my new benefits, we shouldn't have to pay as much for the catheters...but I've thought that before. Time will tell.

These annoying medical bills were made slightly more bearable with the fact that 2014 is off to a good start at work - I sold two new homes this week that together total over $500,000 :)

All-in-all I find myself hoping and praying that this will be the year without an ER visit. This will be the year when our medical costs are less than they have been. And this year I won't be spending days of my life arguing medical expenses. 

Adria during one of her regular visits to the Children's Hospital

The First Seizures made us Both Fall Down

The first seizure I ever saw was my husband's. Unless my memory fails me, I had never witnessed a seizure prior to that night when I awoke to see Adrian shaking uncontrollably in our bed. It was one of the most frightening things I had ever seen.

Yesterday, Adrian shared his experience from his first few seizures. Today, I will share directly from my personal journal what that experience was like for me, his wife. And just to give you a heads up, we both fell down those nights.

Thankful that Adrian spent the first week of January 2014
building a snowman with his daughters and not in the ER!

My Journal - Thursday, January 14, 2010

Happy New Year...or is it? We've been to the ER twice & to more doctors than we have ever personally seen.

It actually started the day after Christmas when Ade had a crazy incident that we thought was "sleep walking." It happened when he was napping in the afternoon and I was at work, so it was quite mysterious.

He was very sore and disoriented that week but didn't know what to make of it. Then on New Year's night we went for a drive and he got coffee with caffeine by accident, so he didn't sleep much that night.

At 5 a.m. I woke up alone in bed, then I got up to see where he was. I heard him sobbing across the house and found him sitting on the edge of the guest bed with his head in his hands. He barely responded when I talked to him. Then...in the darkness I saw blood splattered on the comforter and primarily on the pillow.

Immediately I feared the worst and ran across the hall to check on Adria. Thankfully, she was sleeping soundly in her crib.

I went back in to hold my husband as he slumped to the floor and cried. He was in such a confused, bewildered state and I couldn't see where the blood came from.

He kept crying and so did I.

Eventually I helped him get to our bedroom and he opened his mouth in front of the bathroom mirror. That's when I really lost it. A huge gash gaped on the right side of his tongue - the source of the blood. I dropped to the floor, feeling immediately faint.

I knew I needed to call for help, so I found my cell phone and called his parents. Then I was overcome with a sick to my stomach feeling and knew it was coming. So I laid on our bed and passed out. (I have a history of fainting easily.)

Meanwhile, Adrian came more aware and talked (well not really cause his tongue) to his parents when they arrived.

When I came to we decided to bring him to the ER, after a call to his Aunt Linda made us realize he likely had a seizure.

In the hospital, they confirmed that was most likely the case but a CT Scan and blood tests showed nothing to indicate why. Plus, a seizure most likely is what happened the week before.

Adrian was in a lot of pain due to the muscle exertion and still felt disoriented, but he was sent home with some prescriptions at 10 a.m. I stayed home from work with him that day. He could barely move due to the pain and not eat b/c his tongue wound.

The week was full of doctor's appointments but little improvement with Ade's pain and few answers to the cause of this. He felt like he was in a fog, depressed at times, and completely at a loss for what was happening.

Then it happened again. I saw it this time.

Around 1:30 a.m. on Friday, I awoke to find my husband shaking violently in the bed beside me. I was scared to the point of nearly fainting again as I watched him convulse and blood leak out of his mouth. Feeling helpless, I tried calling his parents and started feeling desperate as they didn't answer and I felt consciousness slipping. I called my Mom and she answered right away and came over.

While waiting for her, Adrian stopped seizing but went into a bizarre semi-conscious state. He moved around the bed in strange motions, stood up and walked then sat back down, cried and looked me in the eye with a terrifying distant, empty stare.

My mom arrived first and soon after, Leona and his parents arrived. His first recollection of this entire incident is of sitting on our bed with the 5 of us staring at him (wondering what to do). Before long Mike, Ade and I were on our way to the hospital again. Mom and Gini stayed home with Adria, who slept through it all.

This time the pain in his arms and shoulders was excrutiating. In the ER, he began to yell and cry out in horrible pain that even high dosage pain meds couldn't touch. It broke my heart to see him in such agony.


That was the end of my journal entry for that day, but the story continues. That's how the seizures started. Can you imagine that happening? Completely out of the blue they came. No warning. No signs. No known causes. And just like that, our lives had changed again.
 

Realizing the Seizures are real and will change us...IN HIS WORDS

It is hard to go back in time and relive these days, these moments when the seizures began. To remember when I awoke in the middle of the night to see my husband shaking uncontrollably for the first time. It's really hard to understand and comprehend where they came from and why they so suddenly disrupted our lives, especially in the wake of our first child being born with a life-long birth abnormality.

Yet, between Dec. 26, 2009 and the first two weeks of January 2010, my dear husband had his first three seizures. There was no warning. There was no family history. He never did drugs, drank alcohol excessively, or engaged in any major vices that can cause seizures.

They just happened to this healthy 31-year-old father who had sacrificed a career to care for his infant daughter. Four years later we still don't know why. We have theories, ideas, possible causes, but they are all simply guesses. And that is likely how it is to remain.

We are not alone in wondering why. Whether it's seizures, the untimely death of a loved one, or dreams that are crushed, I dare say we have all wondered why in life. Then you realize that dwelling on that question can ruin you more than the tragedy itself. You cry at night, then put on your big girl panties in the morning and live each day that's been given you. Just focus on that day. One day at a time, you will get through.

And focus on the good times. I took this precious video of little Adria in early January 2010, around the time of the first seizures. It should make you smile as you read this difficult story...

His second seizure, which was the first time we realized what was happening, came on New Years Day 2010. What a way to welcome a new year and a new decade!

Adrian relives the first time we realized he had seizures...IN HIS WORDS

Within a week following the first strange episode, I had another seizure and there was little question as to what it was. That night I couldn’t sleep and didn’t want my restlessness to keep my wife awake so I had gone to the guest room to lie down. I must have gone to sleep at some point because when I came to I was sitting on the edge of the bed crying and in more pain than I had ever experienced. I think Julle was there with me. She had woken up and realized that I wasn’t in bed and come looking for me. My shoulders were in excruciating pain because I had seized hard enough to dislocate them. I had bitten a thumb size chunk out of my tongue during the seizure so there was blood everywhere; all over the bed, floor, walls, ceiling and me.

Julle called my parents who came up right away and they unanimously decided to take me to the emergency room. Once there they gave me morphine for the pain and started a battery of tests. Shoulder x-rays, EEG, and I can’t remember what else. They were able to tell us for sure that we were dealing with the beginning of seizures and told me that I needed to get set up with a primary care physician and a neurologist immediately. This was a foreign concept to somebody who had never had a doctor before.

The next few weeks went by with a flurry of activity. We found and set me up with the necessary doctors and had the first appointments. Yes, the neurologist assured me I had seizures and more than 90% of seizure victims never find a cause for their condition. “You shouldn’t worry though,” he said, “It’s just a simple matter of finding the right medication to control the seizures and you will be able to resume your normal life”. HA! And then the hammer fell. The state of Delaware, most states actually, requires seizure patients to surrender their driver's license for a minimum of six months and are cleared by their attending neurologist. On top of that, the meds I was put on had side effects that were almost as bad as the side effects of the seizures.

I can’t really describe how we felt then. We were lost, confused, helpless…….., and I was hungry. When there is a hole in your tongue big enough to put your finger in you are very limited to what you can eat and steak is definitely not on the menu. We talked and talked and talked as we drove here, there, and everywhere. I had more EEG’s, MRI’s, and I gave blood, blood and more blood. I did standard MRI’s, high resolution MRI’s , maybe even cartoon and anime MRI’s. It was hard but I just thought that now I was on the meds it was all over and I could try to get on with life. And then just as the hole in my tongue was healing and I could start eating again, I had another seizure. Again it was at night with extreme pain and I bit my tongue, but I was in bed with my wife so she saw it from beginning to end for the first of many times. This time we didn’t go to the E.R. because we had realized already that there wasn’t much they could do except charge us a lot of money so we just called family to come over to be with us and waited till morning to see my doctor. This time was bad enough I needed four months of physical therapy to function again. Thank God for yogurt and apple sauce.

(This is Julle interjecting for a moment...I never change anything about what Adrian writes. He shares his heart and I just check grammar, that is our agreement. However, Adrian did go to the ER after this third seizure. He just doesn't remember it. In fact, there are many things from our lives he doesn't remember now but especially events that have happened within months of a seizure.) 

Some of you, or maybe of a lot of you, may be wondering why I am writing about this. I actually am wondering the same thing and the honest answer is that I am not exactly sure. Oh, there are a myriad of reasons that all put together may be the collective reason but there is no one specific reason. One reason is, seizures can strike anybody, anywhere, at any time and my hope is that by posting my story and our experiences it will help somebody be prepared for a time when either they see a seizure or they experience it themselves.

There is nothing I can say to help you understand what it’s like to have a seizure and I don’t want to because they are different for each person. I can’t even really make you understand what it’s like to have to live with seizures. But having seizures and living with seizures is something that most of you can’t and hopefully never will be able to relate to. As I continue to share my story about living with seizures I would also like to focus on talking about things that you can all relate to; loss, anger, addiction, bitterness, forgiveness, why me?, hope, change, etc. The challenges that life throws at each of us are different but I think that the things we face as a result of those challenges are very similar. More importantly I believe that we can find the love and support that we desperately need from one another to face those things.

I definitely won’t be writing from a Seven Steps To ________, fill in the blank, point of view because I am still on my journey through all of it and in no way an authority on anything. I am just going to share my journey in the hope that doing so will help others find strength, courage, and hope for their journey. If nothing else then hopefully sharing my journey will help me find the strength, courage, and hope I need to continue it. 

The Blizzard of 2010 hit Delaware just after seizures hit our family.

Adria is in the sled with Grandad Seely and Max behind her and Adrian up by our house.

Some days...I freak out

Some days I freak out.

Yesterday, was one of those days. Before lunchtime a series of minor events stacked on topped of each other left me ranting over the phone to my unsuspecting husband.

1. Realized that I failed to pay 3 bills which are now late.
2. Totally forgot about 10 a.m. appointment at work because I was off previous 2 days, and was completely unprepared when he walked in.
3. Got a call from Adrian about a $1,000 medical bill that just arrived for something that was supposed to be covered by insurance months ago.
4. Watched Adria's school bus drive by without her in it. I thought her pre-school didn't start back until Monday!

This probably makes me sound like a completely irresponsible person, but it's not always like this (just more than I care to admit). I'm sure you have days when a bunch of small crap piles up and leaves you feeling...stupid or frustrated. Right???

Once I called Adria's school to confirm that yes, indeed, she was supposed to go back today, I called Daddy to say I'd step out from work and take her to school. Apparently, Adria had been flipping out about not getting to go to school.

And then I freaked over the phone to Adrian with something like this...
You know, I try so hard. I work hard to provide for my family but I can't always keep up with it all. How am I supposed to balance having a daughter with special needs, a husband who has seizures and can't work but get's no disability, working full-time on a commission job selling homes during what's been the freaking worst housing market ever, and then move around the country several times, all with Zero financial support from the government? It's just crappy sometimes and it's always an on-going fight with insurance and we can't ever catch up and...and...I'm sorry I just had to get it out. 

He listened with empathy to my rant. It went on a lot longer than this, but you get the drift. Finally, I took a few deep breaths, calmed myself and went to take my daughter to school.

Adria was excited to be a "drop off" instead of a "busser" and joyfully greeted her friends with a "gorilla hug."  The girls laughed and giggled as they ran around outside waiting for the teacher to come. Adria joins right in, though they run laps around her.

And then she fell down. Right on her bottom, but she kept laughing. Two little girls stopped and each one grabbed Adria's arms, then with ease pulled her up again. It was a brief but touching scene to this mama. And while I tried to hold back the tears, in that moment I was reminded that everything will be okay. We are not alone when we fall down.

This is an amazing little girl, our Adria.

Just moments later, a shy little boy walked up with his mom. He is a "chocolate" boy, as Adria says, and as I waved and watched them, my little girl ran to him and gave him a big gorilla hug. Though he didn't return the embrace, a big, shy grin snuck onto his face. The unabashed love of little children is precious to behold.

Then, I was thankful that this flaky mom forgot that school started today, so I had the chance to experience these moments.

And when I got the call a few hours later that my dad had been in a car accident, I quickly forgot about my petty "events" early in the day. Thankfully, he was okay but a horse had run in front of his work van after breaking out of the fence. The van and horse were both in bad shape, but my dad is just sore and a little shook up.

As I finish this, the girls are stirring and I can't wait to see how excited they will be about the fresh snowfall that came last night. No school for Adria today, but as long as she gets to build that snowman she's been talking about, I don't think she'll miss her friends too much.

I wanted to share this video I recently took of Adria. It just shows her fun, sweet personality.

New Years Letter - 5 Years Ago

Tonight we removed the decorations from our Christmas tree as the holiday season ends. As we look back to 2013 and the surprises it brought with our sudden return to Delaware, we are most thankful that Adrian got his Christmas wish and had no seizure this holiday. We look forward to 2014 and hope that it is "the year of recovery" as Adrian said today.

As we hope and pray the best for each of you this coming year, I'd like to share a letter that I emailed out to friends and family on New Years Day 2009, five years ago.

New Years Letter 2009

I often try to send out a letter with my Christmas cards, but even though the most amazing thing possible happened this year (having our precious little bundle), I somehow never made time for a letter. So on this first day of 2009, I’d like to take a few minutes to fill you in on the latest at our household and wish you a Happy New Year!

My siblings and I as my youngest brother Aaron graduated from high school in 2008.

This photo was taken just weeks after we learned the baby girl I was carrying had spina bifida.

Here I am 7 months pregnant with dear friends, Summer of 2008

For the first time in my adult life, I did not stay up until midnight last night to welcome in the new year. With baby girl tucked away in her crib, we did not feel compelled to stay up on our couch and watch the giant ball drop in New York – not really that exciting. However, soon after midnight a cry from the nursery had me up welcoming the new year mommy style. Adria has actually been a champ about sleeping through the night for the last couple months (often from 9 p.m. to 7 a.m.), but something’s been waking her the past few nights, maybe teething or a little cold.

Our Family Photo Christmas 2008

 

She is really an amazing little gal. Smiling and laughing at us often now, and she’s learning to use her vocal cords to make a wide range of very audible vowel sounds. We love conversing with her. In early December we had another huge answer to prayer. We took her to AI Dupont Hospital for her monthly head ultrasound and visit with the neurosurgeon. There was a good chance she would need surgery if the fluid on her brain increased again, as it gradually had been. We were very nervous, but praise God, there was no increase, so now she most likely will not need surgery! At that visit, we also learned that she was almost 16 pounds. Yes, our little sweetheart has more “natural cushioning” than most babies her age, and we love every pound of her. (Adria was just four months old when I wrote this.)

 

As for Adrian and I, we celebrated 5 years of marriage on Nov. 22, and even managed a weekend getaway with baby to a charming log cabin in the Poconos. Adrian is an exceptional stay-at-home Dad, providing excellent care for our daughter, cleaning the house, washing laundry and occasionally making dinner as well as doing some side jobs and many projects around the house (impressive, I know). This has helped my transition back to work in November go fairly smoothly. However, as a new home sales rep for Ryan Homes, it’s not exactly an easy time to sell. I actually had a great year with them and have been thankful but am hopeful that 2009 can bring better economic times. (It was actually much worse in 2009 and 2010...as we now know.)

This is the townhome community in Salisbury, MD where I was sent to sell homes after Adria's birth.

 

For now, our little family will continue with our current lifestyle and be amazed as we watch the growth and development of our Precious Angel (who, by the way, is in my lap chatting to me right now).

Blessings to each of you this year!

Julleanna on behalf of the Seely Family – Adrian, Adria Mychelle, and Max 

 

To view more photos from 2008, click on this link: http://www.new.facebook.com/photo.php?pid=5268691&l=6406c&id=749275133