A Bittersweet Goodbye

Saying goodbye is hard, no matter what the circumstances.  Moving to South Carolina was an exciting, anticipated event for us. But, that doesn't mean that leaving Indiana, our family and friends, so many wonderful memories, and the place we had both called home for our entire lives was easy. In fact, it was far from it.  Moving day came so quickly, and everything became very real the day that big ole moving truck somehow maneuvered it's way, backwards, into Peony Court. They loaded up everything of ours from Matt and Ashell's house where we had been staying for almost exactly a year, and then everything we had in storage at Fast Print, and that truck was truckin' our belongings down South!

Jeff, Brayden, and I followed a day later, and were fortunate to have one extra passenger along for the ride...Grandma! So thankful my Mom was able to ride with Brayden and I so BZ had some wonderful company and entertainment for the 14 hour trip.  We said goodbye to many friends and family members the couple of weeks leading up to that, Jeff's parents, Matt, Ashell, and Davis the night before, and PawPaw (my Dad) that morning. We drove to Asheville the first day, and on to Charleston the following morning.  The car ride gave me a lot of time to reflect on our journey.

Sullivan's Island...we could get used to this!

It's a very strange thing leaving your home to call another place home.  Strange because in some ways, you don't know if the place you're going will ever really be home. There are a lot of anxieties, 'what ifs', and so many unknowns.  As I'm writing this post in retrospect, we have been in Charleston for 7 months now, and I really feel that both places are home to me. You know what they say, home is where the heart is.  Well, my heart is here with Jeff and Brayden, the two boys I love more than anything in the world. They are my life, my loves, my everything. But, my heart is also with everyone we left behind.  My heart aches to see some of the faces I haven't seen in so long, to just 'drop by' and say 'hi' to my Mom, Dad, Ken, and Donita, to have a meal with them, just to BE with them. I long to see Davis and Brayden playing together, such a precious site I don't get to see enough, to have dinner with Matt and Ashell, to know that Steph and Matt are just a short car ride away, to have lunch with Mimi, a night out with our friends, to have play dates with my friends whose babies I won't get to see grow up in person, the list goes on and on. 

So no, saying goodbye is never easy. In fact, the first time I went 'home' to visit, it was harder to leave than the initial goodbye. But, every time gets a little easier as we continue to build our home here in South Carolina.  Just as when we had to adjust our normal to a new normal with Brayden's arrival, and again with his diagnosis, we are finding our new normal here in Charleston.  We are so grateful to live in a world with Skype, facebook, free long distance calls, and email. I don't think we could have said goodbye without knowing we would have those things to make our family and friends feel less far away. We're also thankful that we're able to make it back to Indiana at least a couple times a year.

When will we be able to truly call Charleston home? I don't know the answer to that.  We don't know what the future has in store for us, none of us does. But, we know that God opened this door for a reason, and we are all in.  Part of my heart will always be in Indiana, but I don't think it's such a bad thing having 2 'homes'.  After all, 2 is better than 1, right?

Our new home - Mount Pleasant rental

When God Opens a Door...

After life had gotten back to normal for us (a new normal, but normal nonetheless!) Jeff and I again discussed our plans to move to South Carolina.  We decided that if God had a plan for us there, he would open up doors, so Jeff began to casually look for jobs again.  From the start of this looking, it didn't take long for the doors to start opening.  Jeff saw a nights position at a hospital, which was exactly what he wanted. He applied, had a phone interview, and was asked to make the trip to Charleston for an interview.

Fast forward several weeks, and Jeff was offered the job as a night pharmacist at MUSC (Medical University of South Carolina). When God opens a door that wide, that quickly, you better believe we were going to leap through! I think it took both of us a few days, maybe even weeks, to really comprehend that this was happening. We had been talking about it and planning for it for so long, and God had worked it all out in His timing.  Although Jeff and I are both planners and doers, we have slowly learned that God is in control, and His plan is more perfect than ours will ever be.

We had one month to prepare for our big move. That was one of the shortest months of my life. Packing with an infant is no easy task! Thankfully, we had the help of family and friends, and we already had half of our belongings boxed up from the previous move. We were also trying to spend as much time as we could with family and friends, and see those that we hadn't seen in awhile.

Another example of God's perfect timing is that we already had a vacation planned to Myrtle Beach in May, right after Jeff got the job offer. We were able to take a couple of days and head to Charleston to hunt for rental houses, and Jeff got his pre-employment paperwork all taken care of.  This also gave us and Brayden some time to spend with Jeff's parents before our move.  Finding our rental house was another thing that fell perfectly into place. Long story short, we almost settled on something due to slim pickens, and we ended up with something bigger, cheaper, and with more of the features we were hoping for at the last minute. God is so good, have I mentioned that yet?!? Everything seemed to be falling perfectly into place...except the fact that we would have to say goodbye to all of our family and friends, and everything we knew as home for most of our lives. Yea, there's that...

The Fam in Myrtle Beach

Oh yes, BZ loves the beach!

Treatment Time

Our 1st Hospital Stay & Brayden's Dedication

One of the hardest things about CF is the unknown.  An individuals prognosis falls on a spectrum: those with mild forms are very healthy, and only slightly impacted by the disease. In fact, you would probably not even know they had CF. Others are sick often, in and out of the hospital, and seem to have ongoing problems, these are the severe cases. Some fall somewhere between these two extremes.  The hard part is, there is no way to know where you will fall on the spectrum.  All we can do is do our part to keep Brayden healthy, keep his environment germ free, stay on top of his treatments, pray, and BELIEVE that he is well. 
In the beginning, it was so easy to get sucked in to reading all the stories online about the things that people with CF have gone through. The terrible hospital stays, the meds upon meds, the coughing, the near death experiences, on and on. It's all there, right at your fingertips. There came a point, however, after a couple of weeks of this for me, that I said enough is enough! It does me no good to read that stuff. To be aware that hard times may lie ahead, yes, but I want to focus on the positive. Brayden's future is in God's hands, and He will be walking with us every step of the way.

We feel fortunate that because CF is now being diagnosed through the newborn screening, we have been on top of Brayden's treatment virtually since he was born.  In addition, treatments are available now that weren't available 20, 10, even 5 years ago. Finally, a change is coming for those with Cystic Fibrosis. I want to focus my energy on fundraising for and encouraging the CF community, and I won't have the time or energy for that if I'm caught up in reading these stories.  (Plug Great Strides...sign up and walk with us or donate and support our team via the BZs Buddies tab!)

Unfortunately, our first trip to the hospital came far too soon for us. But, now we know what to expect should it happen again, and we are going to do everything we can to see that it's a long long time before we're back there!  Looking back, the hospitalization probably wasn't necessary, thankfully, but we're glad we had a better safe than sorry moment instead of a we should have taken care of that sooner moment.

Brayden had what turned out to be a sinus infection in mid-April.  He had a cough, runny nose, and low appetite for a couple of days that didn't seem to be getting better so we called the pediatrician, they saw him, and put him on an antibiotic.  I think he started the antibiotic Wednesday, and by Friday afternoon it still seemed like BZ was getting worse, so we called the CF clinic.  Given that the weekend was upon us, they decided to admit BZ to Parkview to rule out any RSV, bronchitis, pneumonia, etc.  Reluctantly, I packed our bags and Brayden and I headed to the hospital. Jeff had to head to work for the evening shift that weekend.

Happy even in the hospital...that's BZ!

We spent 2 nights in the hospital. They poked and prodded our poor buddy, gave him breathing treatments and CPT every 3-6 hours, and pumped him with antibiotics.  Thankfully, all tests came back negative, and it turned out to be just an aggressive sinus infection.  After 2 nights of little sleep and too many people poking and handling my baby, who turned 4 months while we were in the hospital, we headed home.

We went home late Sunday morning, the same Sunday that just so happened to be Brayden's baby dedication at church.  Given the circumstances, it was the perfect opportunity for us to reaffirm that Brayden belongs to God. He is a perfect, precious gift that God gave us to care for and teach His love to, and we will remember that day and that weekend fondly because it was such a great reminder of how thankful we are that God has chosen us to care for Brayden, to care for him and teach him all about God's love, mercy, and grace.


Here are a couple of pictures from the dedication, and the prayer that we prayed for Brayden on that blessed day.

We pray that Brayden will grow up to be a strong man of God. That he would be blessed with many
opportunities to experience Your love and share that love with others. We pray that he seeks Your
wisdom and turns to You for continuous guidance throughout his life. May he have comfort in knowing that You are always with him and care about him so much. Lord, give him a heart of compassion towards others and also instill in him a purpose to be a witness of Your gospel.
We pray that You would give us wisdom as parents to love and raise Brayden in a way that honors and pleases You, and that through our love for him, Brayden would come to know and accept Jesus as his Savior and Redeemer. AMEN!

He knows the plans He has for you...

As Jeff and I continued to accept that Brayden had cystic fibrosis, we both had a very strong feeling that Brayden's life was going to be one of great significance.  We moved beyond questioning God to really trusting him, and knowing that He had a perfect plan for Brayden.  I don't remember the exact date, but it was sometime around when Brayden was 3 months, I was driving home one day when a song came on the radio. The song is called "The Words I Would Say" and it is by Sidewalk Prophets.  I hadn't heard the song since before Brayden was born, and I remembered that I used to sing that song to him while he was still in my belly.

I sang it to him then because I liked the message, and I loved the song. But, as I heard the song again that day it took on an entirely new meaning.  Those words I sang to him before he was born, I had no idea just how true they would ring for his precious little life.  I'm glad I was almost home when it came on because the tears were a floodin' and my hands were up in the air as God reaffirmed to me that He had a special plan for Brayden's life.  This has become one of my favorite songs and will continue to hold a special place in my heart as sort of a theme song for BZ.  If you don't know the song, here ya go:

The Words I Would Say

And because I'm super sappy, and love music, this has become another song I truly love and sing to BZ often, and will cherish for a long time comin': Come to Me - Celine Dion

Comprehending the vastness of God's love

Becoming a mother gives you an entirely different perspective on many things, one of which is love. You feel this overwhelming, almost bursting, love for someone you just met. I knew that I would love my child, but it is a feeling that can't be described or imagined until you experience it yourself.  Not only was I overwhelmed by my love for Brayden, but I have also learned much more about love through him as well.

Shortly after Brayden's diagnosis, I remember holding and rocking him one night in his nursery.  I was thinking about how much I loved this precious baby, and how I would do anything to protect and take care of him.  I was asking God to give me the wisdom and resources to do everything in my power to keep him healthy and be strong for him. In that moment I felt this incredibly powerful and magnificent warmth wrap around me.  Through Brayden, God was showing me just how vast and awesome His love is.  He was telling me, you know how much you love your little boy, the overwhelming sense that you couldn't possibly love anyone, anymore than you love him right now? The love I have for him, the love I have for you, the love I have for all of my children is so much greater than that, so much more than you could ever imagine.  I had never truly felt or understood just how much He loved us until that moment, as I looked at my little boy and knew that no matter what happened, no matter what life brought his way, he would be OK. He is loved so much, and I hope that I can teach him and show him the greatness of our Father's love like he helped me feel that night.

Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. ~ Luke 12:7

Learning to Live Again

The next few days were filled with a whirlwind of emotions for us.  We were still riding the high of this awesome Christmas gift, adjusting to life with a newborn, and affirming that there is nothing better in the world than holding and caring for our little boy.  The news of the CF diagnosis was like a tidal wave hitting us, and our whole world was flipped upside down in an instant.  We shed many tears, asked God many questions, and struggled to understand how this could have happened to our innocent little baby.               

I can remember going through all of the stages of the grief cycle: 
~ Denial - the test was wrong, we needed to get another test, it was a mistake, he was fine.
~ Anger - why us, why him, what had we done to deserve this?
~ Bargaining - if we had just been tested before we decided to get pregnant, if we hadn't done things wrong in our lives, this wouldn't have happened to our child...this was something Jeff and I briefly struggled with. The enemy was trying to work his way into our psyche by trying to get us to believe that we were being punished for something we had done in our lives.  Thankfully, we both know we have a loving and forgiving God, and this is so far from the truth.
~ Depression - our son is sick, he will always be sick, he will never get better, all the dreams we had, all the hopes and wishes we had for him seemed to come crashing down on us in those first few days.
~ Acceptance - prayer is powerful, our family and friends are so supportive, and God is our rock. He is there in our darkest of hours, when we think we can't go on, when we think there is no hope, He is there. To lift us up, to shine a light, to whisper that He will never leave us, and to show us that with Him on our side, we will learn to live again.

And we did, shortly after his diagnosis we saw a team of people at the Cystic Fibrosis Clinic in Fort Wayne.  Brayden will always have a team approach to his treatment including the doctor who is a  pulmonary specialist, nurses, a respiratory therapist, nutritionist, social worker, genetics counselor, and pharmacist, in addition to his pediatrician.  He will be seen by this team every 3 months.  From the beginning he was put on 2 medications; enzymes to help him digest and get the most from the breast milk (and eventually cow's milk and food), and a liquid vitamin with A, D, E, and K vitamins, specially made for those with cystic fibrosis.  We also give him breathing treatments with a nebulizer and perform chest physical therapy twice a day to help keep mucus out of his lungs. This was all a bit overwhelming at first, but after a few weeks of the routine, this has become normal for us, and life is going on...and not just going on, life is joyful, life is happy, life is full of wonderful, precious, moments that make me stop, dead in my tracks, thank God, and tell myself I want to remember this forever.

Brayden eased into all of these changes like a champ.  He is such a good baby, and helped take some of the anxiety out of things for Mom and Dad by being so calm.  We know that as he gets older and becomes more aware of his surroundings, there will be some struggles, but we know that God is going to walk with us through each new challenge.

Those first few weeks after the diagnosis we had time to process everything and spent a lot of time praying and seeking support from family and friends.  Though we don’t have the answers and we don’t yet know how, we truly believe that God is going to use Brayden to glorify His kingdom.  We believe that he is a special little guy, and that God is going to heal Brayden and use his life to bring others to the Lord.

               

Brayden, Jeff, and I feel blessed to have the family and friends that we do because we know that we can’t walk through this alone.  God has put special people in our lives for a reason. We know that all of you will pray for our little guy, and be supportive through all that life will bring our way.  We want to thank you for your prayers and support, and will keep you updated with all of Brayden’s triumphs. We know that God is working and will continue to work through Brayden, and our prayer is that through his life, God reaches many other lives.  We believe that Brayden truly is a miracle baby.  We will continue to trust the Lord and know that He wants Brayden to be healed.

"And if our God is for us, then who could ever stop us..."
Christ Tomlin - Our God
Love this...one of several songs that helped me through this difficult time.

Bringing Home Baby & Blindsiding News

Brayden was born on Thursday and we brought him home Saturday evening, after a quick stop at my parents to introduce him to my Dad's family who was in town at the annual Cline Christmas shindig.  As any first time parent knows, the first couple days at home with a newborn baby are scary to say the least. You are completely sleep deprived, but running on adrenaline. You feel like the most awkward, unprepared parent in the world, no matter how much preparing and planning you have done, how many books you have read, or how much advice you have gotten from every woman you come into contact with during your pregnancy.  You second guess everything you do, and wonder how on earth you could be responsible for the complete well being of such a delicate, precious, little life.

I'm so thankful I had Jeff there with me for almost a week after we came home. Together, we realized that we were capable of caring for our little guy, and that we would get this parent thing down sooner or later. (Not to mention I had him to change lots of dirty diapers that first week, yay!)

Now for anyone thinking of having a baby around the holidays, I don't recommend it. It's just not enjoyable to pack up and head out in cold weather with a newborn baby. You're tired, don't feel like getting out of bed, let alone putting on anything that resembles acceptable attire, and you will not want to give up your little bundle of joy you are just getting to know to let Great Aunt Bertha or Uncle Wilmer hold them.  If you do have a holiday baby, make anyone who wants to see you come to you!  I did not receive this advice and thus spent time I should have been sleeping and cuddling with my baby boy getting ready and traveling to and from family gatherings.

Anywho, back on track...just when we were starting to get the hang of the sleep deprived, up every 2 hour way of life that accompanies a newborn baby, we got the first of two phone calls that would change our lives forever.  We came home from the hospital on Saturday, December 18th, and got a call from the pediatrician's office on Thursday, December 23rd telling us that Brayden's newborn blood test had come back abnormal, and that we needed to schedule a sweat test to have him tested for cystic fibrosis.  I was completely caught off guard and confused...hadn't the newborn screen tested for CF? Why did we have to go have another test done? Does he have CF or not, and why won't you just tell me!? was what I was thinking.  She said it just came back abnormal and further testing needed to be done.  After doing some research we learned that just because the newborn screen comes back negative does not mean CF is present.  At this point we just began to pray and trust that God had a plan.

Unlike some families who are completely caught off guard with the news of possible or confirmed CF, we knew there was a possibility for us.  Jeff had two aunts with cystic fibrosis, so we were both tested during my pregnancy, and found out that we were both carriers.  It was not such a surprise in Jeff's case, but it was in mine, having had no known family members with the disease.  However, throughout my pregnancy we believed that our baby was healthy, having only a 1 in 4 chance of having CF, and that no matter what, he was in God's care.  Looking back I can say that knowing there was a possibility did make things easier when we got that call, but at the time, it still felt like life stopped for a few days while we waited for the sweat test.  (This also made our holidays not the most enjoyable since we found out about the newborn screen 2 days before Christmas and were awaiting our sweat test on the 27th.)

The next few days were somewhat of a blur for me. We were thankful to be surrounded by family and have the reminder of God's love that is the true gift of the Christmas season, and I think those two things got us through that time and helped us not to completely dwell on it.  Monday was the sweat test, and I remember every detail of that appointment. We showed up and they mistakenly prepped him for blood work which he did not need...as if my anticipation and nerves were not already at their wits end, this added an unnecessary 20 minutes to our trip. We were then taken back to a private area where I watched them strap my 11 day old tiny baby's arm up to a machine to produce sweat so that they could test the level of salt in it.  I will always remember how brave Brayden was, he did so well, and made the process that much easier for me to get through.

I was expecting a call the following morning, so was again caught off guard when his pediatrician called me that night at 5:18PM.  She told me she wanted to call me herself to tell me the results, and she didn't want me to have to wait all night.  For those two things, I am grateful.  As you all know by now, the news was not what I wanted to hear. The sweat test showed without much doubt (because of the level of salt in his sweat) that Brayden

Brayden's Arrival

Brayden was due December 11th, although he decided he wasn't quite ready to grace us with his presence just yet.  As if the 9 months of anticipation weren't enough for everyone, he decided he wanted to build it up just a little bit more before he arrived.  The wait, however, was well worth it.

With the help of some inducing agents, Brayden was born at 5:02 on December 16th. He was 21.5 inches long and weighed a healthy 8lbs. 10oz. It is no surprise I felt him moving constantly since all of that was tucked in my belly! When I first got a glimpse of our beautiful baby boy, I fell in love with him instantly. I never thought I could feel such strong emotions towards someone I had just met until I held our precious boy in my arms. He was absolutely perfect, from his cute button nose to his tiny fingers and toes, he took my breath away. I will never forget that day.

Preggers

I can't say that I loved being pregnant, but I can say that I liked it. I was so fortunate to have an easy pregnancy. I have heard many stories of the problems other women had while they were preggers, and let me tell you, I am so thankful for what little I had to go through.  I did experience nausea during the first trimester, and had a couple of incidents where I felt very faint, but aside from just the usual being tired and having to pee constantly, I will have good memories of being pregnant with Brayden.  My favorite part of being pregnant was feeling my little guy kick and move. It's no surprise he's now a wiggly, energetic baby because I felt him move all the time while he was in there.

The most eventful part of my pregnancy was the gender mixup we had.  It was the appointment before the appointment we were supposed to find out what we were having.  Jeff was with me that week, but wasn't going to be able to come to the next one, so beforehand he had suggested we try to get them to do the ultrasound this time. I explained to him that they have to be scheduled, so they couldn't just do it whenever we wanted.  However, during my appointment my OB asked if we were going to find out what we were having, and he must have sensed the urgency in my anticipation as I told him yes because he offered to do an ultrasound himself right then.  Obviously I said yes, and he took us back to the ultrasound room.
I hadn't done much research on ultrasounds at that point since I didn't expect to have mine until the next appointment, so I didn't really know what they were looking for as far as girls go.  I also hadn't filled up on water, so it's no surprise baby Brayden was squirming all over the place in there. Apparently doctors aren't too versed in reading ultrasounds because he told us he was 95% sure it was a girl...Brayden was full of surprises before he was even born.

About a month later I had my actual ultrasound so that they could take all the measurements and make sure everything was 'all good'. When the tech told me it was a boy I was in disbelief. I made her show me again two more times before I left the room. She probably thought I was crazy, but I just could not get over what she had told me! I called Jeff and we were both in shock for awhile to say the least!  I had already registered for girl stuff, bought the bedding, some clothes, and shared the news with family and friends. Moral of the story, don't let your OB perform your ultrasound, they are not trained to read them like the techs are!  I did, however, have fun registering twice, and I'm so glad we found out he was a he and not a she before he actually arrived! 

How This Wild and Wonderful Ride Began

Jeff and I got married in September, 2007 and embarked on our journey as Mr. & Mrs. Shiveler.  We knew we wanted to have a family, but we also knew we wanted to enjoy our time together as husband and wife before we brought a child into the world, and ventured into all the responsibility that comes with being parents. 
Before we got married, Jeff and I had agreed that we didn't think Fort Wayne (Leo) would be our home forever.  We both wanted to live in a warmer climate, close to the beach.  We had vacationed in South Carolina together and after much research and long nights of talking about our future, we decided we thought we would like to call Charleston home.
 
I finished grad school in May of 2009, and we decided to put our house on the market shortly thereafter. In the meantime, I began casually looking for work in the Charleston area. I had a few phone interviews, but nothing panned out. Spring and summer rolled on, and in spite of the terrible housing market we had 20 some showings, but no bites.  As winter approached and our second 3-month realtor contract came to an end, we decided we were going to have to tough it out for yet another Indiana winter. We took our house off the market, and life went on as usual.

Although we had previously thought we would wait until we moved to have kids, we decided there was never a "perfect" time to start a family, and we were ready for our journey as parents to begin.  Meanwhile, spring finally showed up in the Midwest, and we decided to give selling the house another go-round with a new realtor.  We had our first showing a few days later, which happened to be Good Friday.  Two days later, on Easter Sunday, we got an offer on our house.  Just when we thought we could not possibly receive any more good news on a day filled with celebration for Jesus' resurrection, it just so happened, there was one more piece of good news God wanted us to celebrate...

I will never forget Jeff's response when I showed him the at-home pregnancy test I had been anxiously waiting several days to take.  "Well, better luck next time," was his response. Turns out they don't teach you to read pregnancy tests in pharmacy school!  As excited as we were that night, we had no way of knowing all of what God had in store for our future, and how much joy the results of that one plastic stick would eventually bring us.