Monday, December 19, 2016

Jeremiah 29:11

One year ago today, I was told that medically, there were no more appropriate treatments left for me to try in regards to my Ulcerative Colitis.  No matter the diagnosis, this is a tough conversation to have.  My mom and I sat in the hospital room up at UNC: Chapel Hill and wept. We struggled to understand why this would happen less than a week from Christmas. Why, during the busiest weeks of our lives, would everything come to a screeching halt?  Well, one year later, I think I have at least two of those answers.

1) Christmas has become the busiest season of most people's lives. But should it be? Why do we pile so many engagements on our calendar just to stress out about how we will attend them all? Why do we feel the need to bring our child to every single Santa, Christmas tree, and snow related activity, even if it is at the cost of our sanity?  I don't have an answer for that.  But, is that what is most important?  Christmas is very simply about the birth of Christ. It is about spending time with those who you love and celebrating our Savior's birth. It is about the acts of giving, as Jesus so selflessly gave of himself.  And, I was in full swing of the typical December madness when I "squeezed in" an appointment to my GI doctor on 12/15/15 that would lead to my admission, and later the surgery to remove my large intestine. I think that God was teaching me so many things through that admission and surgery and this was one of them. Slow down. Stop trying to check boxes on your December to-do list. Be still. Listen. Pray. Trust. I have never, ever felt closer to God than the many times that I've sat helpless and out of control inside the walls of the hospital...whether it be for myself, my child, or a loved one. I had no choice other than boredom & self-pity last December but to dive into the word of God and find peace in Him. This year, December has still been busy, but much less so. I've toned down the number of to-dos for both myself and my family & instead tried to just soak up & enjoy the season.

2) I like to be in control. Those who know me well know that I am not a good decision maker.  However, I still like to have the feeling of control.  I hate flying on airplanes because I have no control. I hate when my child is in the OR/cath lab, because I have no control over the outcome. I hate relying on others to complete my to-do list, because I am nervous about whether it will be done the same as I would do it.  But, slowly, I've learned to give up control {in most areas}.  I still have to take an ativan to fly, but I've had no choice but to lean into God during Kinsley's procedures, finding peace only through prayer.  I have learned to delegate tasks, both at home & at work, to avoid a stress overload. And last year, while sitting in the hospital, I learned that Christmas would go on, with or without me.  Mom kept me company and distracted. Kyle's mom wrapped presents. Kyle's aunt attended Kinsley's school Christmas party. Kyle's cousins helped assemble large gifts. Katy and my Dad were willing to help do anything to ease the panic that I was feeling since I was supposed to host Christmas. Kyle's cousin Jamie sent me a Christmas tree to my hospital room to decorate so that it could feel more like home. Kyle was incredible in many ways, but also brought the kids to see me despite the long car ride. I had to rely on others. I had to rely on Him. And that's exactly what I think He had in mind for this season of my life.  He was quietly whispering, "Let go. It will get done. Even without you. I AM THE ONE IN CONTROL. I am the same yesterday, today, and tomorrow...despite your circumstances, despite your location, despite everything."

Remember that when life doesn't go according to your plans, there IS always a bigger plan. And it is for your good. Be glad that you don't get to see the big picture all upfront, as it likely wouldn't be as valuable or make as much sense before the struggle. Trust & believe that things will work out. Look for the blessings & look for the lessons.

Until Next Time..
Love, Jen

Sunday, December 11, 2016

The Miracle Maker

I'm back!! After a few friendly nudges, I am back to writing.  So much has gone on since I last wrote. But, the highlights seem to be that we've moved into our new home in South Carolina after ~10 months of construction, I had 2 surgeries for my Ulcerative Colitis (another story for another day), Kinsley Anne started kindergarten, Wyatt started preschool, and Kinsley Anne had another heart procedure...the last being today's topic.

{Insert back story before I proceed for anyone new to the story: Kinsley Anne was born with a couple of "special features" including a left pulmonary artery (the vessel that carries blood from the heart to her left lung to pick up oxygen) that was barely open.  About 2.5 years ago, Kinsley Anne had a balloon blown up inside the artery to inflate it slightly...this took ~10 hours.  Then, just over 2 years ago, she had 2 stents placed inside that artery (this also took 10 hours).  She was only born with ~1/3 of her left lung.  Having that artery opened up lets her lung get additional blood flow, which hopefully encourages the lung's growth.}

This past week feels like it's been such a whirlwind but I sit here with such a thankful heart. For some reason, with this heart procedure, I had such an unsettled, uneasy feeling. When K had her first 2 procedures, she was sick so often...on antibiotics more than she was off. So, while it's never easy to consent to lengthy procedures, the need was clearly evident. Since that time, Kinsley has been incredibly healthy. In just over 2 years, she had a quick bout with the flu, a sinus infection, and an occasional cold.  So, the decision to do this procedure was not as obvious.  However, we knew that the time had come and as nervous as that made me, I knew it was the right decision.

Fast forward to 2 weeks ago. I had spoken with Kinsley's teacher and school nurse and because of the rampant GI bug, strep throat, and various other illnesses floating through her school, the decision was made to pull Kinsley Anne out and allow her to do her schoolwork at home until procedure time.  The cardiologist supported that decision & with the help of my parents, she was distracted and entertained.  Then, the day before her procedure, I received a phone call that temporarily turned our world upside down. The nurse practitioner called me and told me that K's cardiologist had a mix-up and would actually not be in the cath lab "tomorrow," the day of our procedure.  She gave us two options: we could reschedule or we could come as scheduled and allow another doctor to do the procedure.  I'd like to tell you that I was cool, calm, and collected while making this decision. However, I lost it. I was really upset that a "mix up" could be threatening my girl. Mama bear came out.  Then, my rock solid husband began to speak with his voice of reason.  We quickly researched the alternative cardiologist (who was available to step in and perform the cath) and decided that he was MORE than capable. He is actually the director of the cath lab and has performed an unreal number of complicated cases. A blessing in disguise? Quite possibly.

On the day of the procedure, we arrived at the hospital and were treated extremely well. We met with the pediatric interventional cardiologist that would be performing her cath (for the first time) and really liked him. However, he is a realist and discusses all possible outcomes.  He told us about how tricky this procedure would be and how there was a chance of her needing open heart surgery before the day was through.  Kyle and I swallowed hard.  Although we knew that in the back of our heads, it was hard hearing it from the doctor's mouth.

At about 1145, our sweet girl was taken back to the OR. Kyle and I left to go downstairs for lunch.  Upon our return, the nurse requested an update for us. She told us "they are ballooning the stents now."  When she left, Kyle and I looked at each other and said, "well, surely she misheard or misunderstood."  We decided to tell people that they had started.  You see, in previous procedures, it took ~4 hours for the doctor to reach her artery.  So, in 1 hour, we found it very difficult to believe that they had already accomplished that.  Then, ~45 min later, the nurse practitioner peaked into our room and told us, "They're done. Just holding pressure."  I asked, "done?" in disbelief. She nodded and said, "yes. Dr. Kim will be out soon to explain everything."  Kyle and I literally sat with mouths wide open. My sister, who had come for a quick lunchtime visit, saw our state of shock and excused herself.  Soon, the doctor came and told us that it was "dare he say, incredibly easy."  He was able to dilate the stents from 5mm to 8mm and there were no complications.  He even did some "mapping" of her vessels since they got done so quickly.  He laughed and told us that "even a blind squirrel gets a nut now and then."  We appreciated his humor but continued to stare at each other in awe.  I finally said, "Kyle. I don't know what to say. God is so good. He's the miracle maker!" ...and like all emotionally unstable women, I busted out in tears. The happiest tears I've cried in quite some time.

God is so good. He took us from absolute chaos to miraculous outcome in 24 hours. And only He can do things like that.

Our sweet girl was so incredibly anxious this time. She did not want to eat for 36 hours before her procedure and actually got sick quite a few times from her nerves. While she is a courageous child, she is still human and did not like the unknown. She asked many difficult questions, such as "why do I have to do this? Why me? Nobody else in my class has a special heart."  Questions that she deserves to ask, but that here on Earth, this mama doesn't have a simple answer for. She was a trooper, though, and we are really proud of her.

Jesus looked at them and said, “With man this is impossible, but not with God; all things are possible with God.”
Mark 10:27

Until Next Time..
Love, Jen