He Has a Story to Tell

In looking back on my blog, after a 2 year break, I noticed my blogging slowed down dramatically after Chase was diagnosed with heart disease. I created this blog to help me cope with Carter's diability and when Chase became sick I think I gave up a little. Since then I have really accepted my childrens medical challenges and I don't feel so broken. I feel however, that I skipped some very important moments in Chase's life that led up to his recent journey across the country! So I shall take it back to where his journey started... Shortly after Chase turned 5 in May of 2009, he became ill. At first, he experienced low stamina and some asthma flare ups. We took him to the doctors many times because the symptoms were not improving and they kept him on regular treatments for asthma. Over the next 2 weeks Chase became very sleepy and sometimes lathargic. He was always talking about being 'tired' even if he had just woke up. His stamina worsened and he couldn't run or play with his friends or his little brother. Chase continued to sleep, heavily at times, it became very scary. Day by day it worsened and we couldn't figure out what was wrong, we felt so helpless. After weeks of worsening symptoms we went to his primary care, desperate for some answers. After listening to his heart during the exam the doctor said "something doesn't sound right, let's get an EKG". I wasn't really too worried, I hadn't even thought of the possibilities of something being seriously wrong. I headed to the hospital with Chase thinking the test would show nothing but a healthy heart. When the cardiologist came into the room after the EKG I could tell instantly the results were not good. The look on the Doctors face scared me and I instantly started to panic. My breathing got quick and shallow, my palms were sweaty, my head felt dizzy, I was spinning out of control. The cardiologist saw my panic and quickly started to lay out the details in what seemed to be a foreign language. "Your son is in complete heart block", he said to me as my brain searched for logic and answers. There was no logic to be found, and I started firing questions at the cardiologist, "You mean he has a blocked artery? How can this be happening? Do you know about his brother, Carter?" After I stopped rambling, he explained things to me in a way I could understand. Chase did not have a blocked artery, it was much worse, his heart had NO electricity! It just stopped, and when it did his heart pulled twice the amount of blood in, working twice as hard to pump all the extra blood out. Without the 'electricity' his heart was working extremely hard to keep pumping, causing his heart to enlarge. The massive stress on his heart was causing his heart rate to slow dramatically and no amount of activity would increase it. The only treatment for Chase was to have a pacemaker implanted and he would need one for the rest of his life! This was very hard for me to wrap my head around and I was in complete denial. I kept asking the doctor how this could be possible, how could both my children have such unusual medical problems. I wondered how I would go home and tell Mike this devestating news. We left the cardiologist with a holter monitor for 24 hours and a follow up in Boston with a pacemaker cardiologist. With this news I left the doctors office feeling numb. Telling Mike was so difficult for me, even more difficult for him to hear and accept. We were both devestated and wondered how one family could face such hard times. We questioned God's role in our life even more than we did when Carter was born. I wanted to wave a white flag for God to see and I wanted Him to hear me ask WHY? WHY? WHY? I wanted answers! Shortly after his diagnosis and consult in Boston he became extremely sick, all he did was sleep. Chase, my once rosey cheeked and smiling, child, was pale and lathargic. I sat by his bed each night checking his heart rate obsessively and each night it went down. I was a nervous wreck every second of every day. The words the doctor said to me that day as I left the office kept ringing in my head, "Do you know CPR? Because if he collapses you will have to keep his heart going until help arrives". We searched for answers but there was no reasonable explanation for Chase's diagnosis. He did not fit the typical circumstances for Third Degree AV Conduction Block. Quickly his heart rate started to drop daily. First he was in the low 60's, then he quickly dropped to the 50's and it continued to drop each night. The situtation became very scary when his heart rate was in the 30's and I could barely feel it. That night his rate dropped to the 20's and his heart was in extreme distress. I knew this was bad and was scared that it happened so quickly! We called the cardiologist and he set up emergency surgery for the next day to implant the pacemaker. Preparing for our trip to Boston Children's Hospital was strange and difficult. I kept having to remind myself which child I was packing for. We had already faced so many surgeries with Carter at BCH that my mind was on auto pilot. For the first time Carter would be staying with my Mom, instead of Chase. Carter would be visiting his brother, instead of Chase. Mike and I were still in denial but we managed to go through the motions, as we had before with Carter. On the morning of his surgery Chase was very lathargic and his skin was so pale we could see every vein in his body. His skin color was ashy and grey and there was no color in his lips. I remember asking God, is my baby going to die, are you going to take him from me? Most of the pre-op in the Cardiac Unit leading up to the surgery is a complete blur but I do remember how happy Chase was that the nurse gave him a new lego set to build! As we waited and worried I snapped several pictures of Chase building his lego set. At that very moment, looking at Chase through my camera, I saw how sick he was really was and I asked God to protect him during his surgery. Before we knew it he was taken into surgery and we began the WAIT. This was not the first time we sat waiting for a child to come out of surgery and it wouldn't be the last. The clock seemed to move so slow and we anxiously waited to see the doctor emerge from the double doors. Finally we saw the doctor walking our way and I think I may have stopped breathing while waiting for him to speak these words, "Chase did great and the surgery was successful!" Once Chase woke from the anesthesia we instantly noticed his color was back! His cheeks were rosey and his lips were pink, we couldn't believe it! The minute he sat up in his bed he said "Mom, I feel so much better, can we go home?" I was shocked! The cardiologist was right, the pacemaker would be like a switch, and once he flipped the switch, the life would be brought back to Chase's body. The blood was flowing and Chase was smiling and we felt such great relief! Having a pacemaker would keep his heart working properly and with some minor precautions he could have a productive and active life! We saw a different child after the surgery, energetic, healthy and full of life. The cardiologist gave Chase a copy of his xray showing his pacemaker and the two leads to the heart, a very cool picture for Chase. His pacemaker paces 100% of the time in the bottom of the heart and 30% of the time in the top of the heart. He has regular check ups at BCH to make sure the pacemaker is running properly and to check the life of the battery. Every 7 years or so, Chase will have his pacemaker replaced as the battery runs down. He has had to learn what is safe for his pacemaker and what is not. Chase's school has made accomodations to make sure he is safe around modems and amplifiers used in the school setting. Overall, having a pacemaker doesn't have a lot of drawbacks and it definately serves a very powerful purpose, life! Three years later, I write this blog with a more positive outlook on life. I look at my children and I see their amazing strength and courage, and from that I find happiness. This is Chase's journey and I am blogging about it because He Has A Story to Tell!

Sometimes We All Need a Gentle Nudge

Today a dear friend asked me to re-share my blog url...I was embarassed to say I had not blogged in several months! As I opened my blog tonight I realized several months was really 2 YEARS! I started this blog as an outlet after Carter was born. I found myself needing some "Dear Diary" moments and my blog was the perfect solution. After I started blogging I found it to be so therapudic I never wanted to stop...but clearly I did! I have so many amazing things to blog about but I think I shall start with a quick update. Then I can really get back into blogging and share some more detailed stories of our amazing life as the Meads! The 1st big change in our life is our new HOME! About a year ago we moved into our home in the north end of Manchester, after a long year of renovations. We have a cute little ranch on almost an acre of land with a great tree house in the woods for the boys! The best part of our house is that it is OURS! We are not completely settled but we have forever for that! When we bought the house it needed major work. So we gutted it and started over! The best renovation was making it handicap accessible for Carter. We opened up the livingroom and kitchen area and added an elevator! Yes, an elevator! Here is our Home!

Chase is now 8 and Carter is 6! If you know how to freeze time let me know! I never want my family to change, I wish I could live in this moment FOREVER! Both boys are attending Smyth Road School, Chase is in 3rd grade and Carter 1st! WOW, it is still hard to believe how much they have grown! I will save more detailed updates on the boys for more blogging. Don't worry I won't wait 2 years again! Here is an updated picture of the boys on the 1st day of school!

As for Mike and I, we just celebrated 12 years together! We love life and our family time together. Over the past couple of years our family has really become involved with Easter Seals. We enjoy raising money and awareness for Easter Seals. I have done a lot of public speaking for ES and shared our story with others. Our family begins a 2 year term as the Easter Seals Rep Family in November of 2012! This is such an honor and will bring us many great memories with our Easter Seals Family! We have already started to attend events and I promise to blog about them! Here is a photo of us at a recent ES event. In future blogs I will try to post some videos of our family being interviewed for ES in front of 600 people!!! I will say this, Chase made everyone laugh during our interview, as he always does!

There are so many new and exciting journeys coming our way and so many we already experienced and I can't wait to blog about them all! Stay tuned for blogs including Chase's big trip to California, Carter's new prosthetics and Easter Seals adventures and fun family photos from our 1st year in our HOME! Sometimes we all need a gentle nudge to do the things in our life that make us feel better. Im thankful for the person in my life who gave me this nudge, always shows his love for my family and always inspires me to be the very BEST person I can be! Thank You and I dedicated this blog to YOU a very special friend!