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.