I need to take a moment to say, THANK YOU. In times when trials come your way, it brings you so much strength when people, people you might not even talk to on a regular basis, rally around you. Since the boys were diagnosed, William and I have seen the true meaning of love. You are loving our family in ways we can’t explain. With Great Strides events happening over the next month, we want to take the time to thank you and encourage you to get family and friends involved. The walk is a short 5K and I promise you will be inspired by the all of the people coming together to better the lives of those affected by Cystic Fibrosis. We want you to know that your selfless act of donating to the CF Foundation is bringing us closer and closer to medicine that will help our boys and ultimately one day to a cure. You are a part of something so much bigger than yourself. We are so inspired by everyone who is taking time out of their day to walk for a cure. William and I can’t wait to see what the future holds for everyone in the CF community. You are a blessing. You are loved. You are appreciated. You are a big part of our fight. Thank you.
The Wright Fight
Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
CF babies are known for being extra salty. The reason is that a faulty salt chloride channel causes people with CF to excrete too much salt. The diagnostic test for CF is called a “sweat test” because it measures the salt chloride levels in your sweat. We often lick (yes, lick) the top of their heads, taste the salt, and remind them they are sweet. You see there has been so much about the diagnosis that has been both salty and sweet. Daily breathing treatments, chest physical therapy, extra salt, and extra supplements make for a long day that can easily become overwhelming. A simple cough turns into a sudden scare because you worry about if the boys have mucus build up in their lungs. Our monthly visits to TCH cause so much anxiety as we drive to our typically 4 (or more) hour appointment in which we never know what will be said. However, there are many things that keep us going. The sweet things that give us the push we need to make it to the next day. We’ve had so many people bring dinner, offer to watch the boys ( we will take you up on those offers some day), text, call and support our various fundraising efforts. When we finally make it into TCH we’re greeted by our care team – a team of 6+ people dedicated to keeping an eye on the boys and providing them (and us) with the very best of care. I know I’ve said it before and I will say it again, we are surrounded by the very best of people. Generous, honest, loving people that make up this army that is marching behind our babies. We often think about the “salty” moment when we have to explain CF to the boys and what it means. Then we remember that in the same moment we will get to tell them of the amazing people that have been with them on their journey. We’ve seen the salty and sweet and we believe our Father is using the boys to salt the earth. He is using these boys to enhance the flavor of all of our lives. These boys have made our daily moments, the sweetest moments we’ve ever experienced and we’re so thankful for the gift they continue to be. For now, we go enjoy another day with our salty & sweet bubbas and pray that your day is full of the very sweetest of moments as well.
13 “You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for anything, except to be thrown out and trampled underfoot.
14 “You are the light of the world. A town built on a hill cannot be hidden. 15 Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 16 In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.
William and I have been enjoying some time together with the boys thanks to the holidays. Today I spent much of my day doing things around the house. By things I mean organizing and cleaning, which is what I do best when I’m trying to avoid my thoughts. In the back of my mind, I’ve been thinking about the irregular blood results we received from Merritt’s liver panel a few weeks ago. Three weeks ago we brought Merritt and Campbell in for their monthly CF appointment at TCH and the doctor order some blood work to check liver function other areas of concern with CF patients. We received the results days later and found our Merritt’s numbers were off the charts. We called Merritt’s GI doctor to get more clarity on the results and were told about the possibility of liver disease. Our next step would be to wait two weeks and redo the blood work to see if there is any change in his numbers. Two weeks came and went, and I took little man in to get his blood work done last Monday in hopes that we would get some news before Christmas. Christmas came and went and still no news. Which brings me here today. William’s mom and brother came into town to spend some quality time with the boys (and us). They arrived around 4, and we needed to make plans for dinner, so William and I were able to sneak away on a little date to the grocery store while Pete and Gram watched the boys. While we were at the store, we ran into our neighbors and began talking family and holidays and naturally the topic of the twins and CF came up. Our neighbors mentioned that they have friends in the area that have twins with CF, so they were familiar with the lifestyle and complications Merritt and Campbell may have to deal with. I asked them how old the twins were and the conversation quickly stopped. Our neighbor was searching for words. He then explained that they had both passed away. I couldn’t hold back tears and began crying. William like always came to the rescue, he started doing the math in his head and figured out they were born 37 years ago. Which he then explained all the advancements made with CF and CF research in the last 37 years. I was visibly saddened by our conversation. Our trip to the store, a time for me to escape CF care and worry quickly turned into another occasion where CF smacked me right in the face. We arrived back home and spent the evening making dinner and entertaining the boys. Then the phone rang. It was our GI doctor calling to discuss Merritt’s most recent blood results. You could feel everyone’s heart sink. William walked into our bedroom to talk to the doctor in private where he was told that Merritt’s numbers have significantly decreased. This is great news. Fantastic news. With decreasing numbers, it seems that liver disease is not present at the time. We will do further testing in a few weeks as the numbers are still out of the normal range, but can we take a second and thank God for this miracle. Tonight I focus on the good. You see today was hard and my heart ached from hearing yet another story about sweet kiddos losing their life to CF. However, today was good. We got some good news. News of healing. We are seeing the power of prayer and our mighty God move. We are praying big and our heavenly father is answering. So tonight, we continue to ask you to pray big for our boys. God is moving mountains.
On August 24th our battle began. As we sat in the NICU cuddling our boys the neonatologist came to review the Newborn Screener. The test revealed that the boys would fight Cystic Fibrosis. I cried big, ugly, loud tears and braced myself for the worst. We were given information about the CF Clinic at Texas Children’s Hosptial, where Merritt and Campbell are now being treated and set up appointments right away. Over the past four months, I have had to find the good in every situation to keep me going. Looking back, we are blessed. Five years ago CF was not evaluated on the Newborn Screener. We found out when the boys were just fifteen days old, giving them a chance to benefit from new treatments to help keep their lungs and pancreas as healthy as they can be while we wait for a cure. We are blessed. We live thirty minutes away from the best CF center in the county. We are blessed. Despite the CF, our boys smile and laugh the cutest laughs you’ve ever heard. Our home is full of more love than I ever thought possible. This journey is going to be hard, but I’m confident that God has his hands all over our sweet babies. It’s my prayer that William and I continue to have the stamina we need to run this race. We’re ready, and we’re so lucky to have family and friends fighting with us.