Wesley Allen Thomas was born on October 8th 2003 on a Sunday morning. He was 21 inches and weighed 7 pounds 9 ounces. Other than a scare during labor from losing the baby’s heartbeat, being born blue and not breathing due to the umbilical cord being wound several times tightly around his neck everything went just as well as could have been expected. He was a healthy baby boy. We were released two days later from the hospital. I remember on our way home riding in the back of the car next to Wesley crying and thinking “I can’t believe the people at the hospital would just let me go home with this tiny baby! I don’t know what I’m doing! What if I don’t know how to take care of him?” I was a first time Mommy of only 18.
Everything seemed perfectly normal for the first several weeks; then Wes started having bad acid reflux and projectile vomiting. I was startled by how much he would throw up after he ate, a lot of times it looked like more came out than had gone in. I had to take along five or six extra changes of clothing for Wesley and at least two extra for myself when we went out.
He was hungry all the time. I breast fed him exclusively for the first three months but I couldn’t seem to produce enough milk for him; I was constantly feeding him and he was still always hungry. By the time he was three months old we had to start feeding him solids. That was when we started to notice problems with his digestion. He didn’t seem to be absorbing and digesting his food properly and he started having 8 to 10 very loose stools a day. His appetite was still insatiable. Our friends and family all thought it was entertaining to watch him eat because he was such a little guy and could put down so much food. By the time he was 6 months old he was eating more than I was, by the time he was 7 months old he could eat an entire medium pizza by himself and still be hungry; all the while he continued to have numerous loose stools everyday and cried because of tummy pain.
He looked perfectly normal on the outside except that his tummy was always distended and tight and his arms and legs were so skinny. He looked a little like a pear with tiny arms and legs sticking out. When he got a little older he would say “I cwaping I cwaping” when he was having tummy pain. I remember once getting called back into his Sunday school class because the teacher thought he was crying out “crap! crap!” when he was actually saying “cramp cramp” trying to get them to understand that he was hurting. I also distinctly remember noticing how salty his skin tasted when I kissed him.
I knew something was not completely normal with Wes. I spoke to his pediatrician about the different things we noticed but he said he didn’t think anything was seriously wrong and told us it was something he would eventually outgrow. I was a first time mom, I thought something didn’t quite seem right but I also didn’t have another child with which to compare this experience and since the doctor was assuring me that everything was fine I tried not to worry. These symptoms went on the same however Wes managed to grow and put on weight in spite of them. He always stayed right at or under the 50th percentile.
When Wes was 20 months old our little girl Evynn Elaine was born. Around this same time he began developing a deep and wet cough that progressively got worse. As Evy grew a little older it became even clearer to me that these symptoms that Wes had were not typical to children. I now knew what having a “normal” healthy child was like. I started looking for a new pediatrician and took Wes to several different doctors to see if they could tell me what was wrong. They all diagnosed him with either allergies or asthma of some form or another and started treating him accordingly. They put him on several different kinds of medications none of which helped and so we continued to search for answers.
When Evy was 15 months our youngest son Ethan Michael was born; Wesley had turned 3 just a few days before. I was so worried about him at this point, he was doing worse than ever, he had a terrible cough and major digestive issues and I now had a new born baby. I was worried about Wes but I was also worried that whatever was going on with him might get passed on to the baby. I had finally found a pediatrician I trusted and felt comfortable with. I told him all about Wesley’s symptoms and he agreed with me that something wasn’t right; Wes had had the persistent cough for almost a year and a half at this point. At first he also tried treating him for allergies and asthma but when he saw that it wasn’t helping he told me we needed to run some tests to start ruling out some possibilities of what might be wrong.
The first thing on the list was to run a sweat test on Wes to test for Cystic Fibrosis. I honestly didn’t think much of it; I had never heard of CF and didn’t know anything about it. I asked the doctor what Cystic Fibrosis was and the only reply he gave me was to say “well, it’s not good”. I still didn’t worry too much, the doctor assured me that it would be very unlikely for Wes to test positive and that the only reason he was running the test was so that he could rule it out as a possibility.
My mom drove the kids and me to Saint Francis hospital on Aug 1st 2007 to have Wesley’s sweat test run. Mom stayed in the waiting room to watch Evy and Ethan while I went with Wes to have the test done. It took about an hour from the start until we received the results. The woman who administered the test was very kind, I remember her telling me there was nothing to be worried about, that they did these tests all the time and they almost never came back positive. I was sure she was right.
Wes and I went back to the waiting room with my mom and the other kids to wait for the results. I remember everything from the point when the woman came walking toward us with a strange look on her face until a week later when we received the final diagnosis from the DNA test like it was in slow motion like a bad dream. I knew Wesley had something the matter but I never imagined it would be anything this devastating. She came and told us that the test had come back positive; she looked worried and nervous and told me she had got our doctor on the phone and he wanted to speak with me. I still wasn’t sure what all of this meant, like I said I had no idea what CF was all I knew was that it wasn’t good. I was wondering why she looked that way and why it was so important that the doctor talk to me before we left the hospital. I went to the phone, the doctor explained that the test was positive; Wesley’s sodium chloride level was so high it was probably accurate. I remember asking him if it was possible that it could be anything else and him mumbling something about a couple other things that were not likely. He ordered a DNA test to confirm the diagnosis and a lung x-ray to try and asses any lung damage.
All this time I felt like I was walking in a stupor; I was still confused, afraid to ask any questions and I had a terrible sinking feeling in my stomach. I just wanted to get back home where I could think about what was going on and try to collect my thoughts. Roy called as my mom was driving us home and I remember telling him that the test was positive, that I wasn’t sure what that meant but I knew it wasn’t good. It was going to take up to 10 days before we would get the final results from the DNA test.
My mom dropped us off at home and I hurried to put the kids down for a nap. The first thing I did after that was to sit down at the computer. I Googled “Cystic Fibrosis”, the first website that came up was CFF.org the Cystic Fibrosis Foundations website; the first words that met my eyes as I scanned the webpage where “Genetic”, “Fatal”, “Disease” and “No Cure”. The average life expectancy was 35 and most of that time was spent in a struggle to survive. I was shocked and devastated. I had never expected anything like this. I cried out “Please God no! Don’t let this be!” I didn’t bother wearing any makeup for the next several weeks; there wasn’t any point I cried so much it wouldn’t have stayed on.
That week of not knowing for sure and fearing the worst was hellish. We couldn’t sleep, we couldn’t eat. I would wake every hour at night and sit beside Wesley while he was sleeping and pray over him… even God seemed far away. Seven days later I got the call from the doctor, it was confirmed that Wesley had Cystic Fibrosis; he carries two copies of the mutated gene DeltaF508, he received one from Roy and one from me.
A few days after the diagnosis I was driving in the car with the kids and Wesley excitedly started telling me all about how much he loved his daddy and how he wanted to grow up and get married to a wife and be a daddy just like his daddy. How that pulled at my heart and I hurt for him! I wanted that for him too! But it was something I didn’t know if he would ever get to do. People with CF have shorter life expectancies and in most cases are unable to have children. I know he was still just a baby of 3 and a half when he said that but he had all of the hopes and dreams from life that everyone else does and my heart was broken for him at the thought that those things might not come true for him.
I cannot express what you go through when you find out your baby has a disease that will take their life, that there is no cure. What it is like to feel completely helpless to not be able to protect and save your baby who you would give your own life for. Having to face the likelihood of watching your own child die before you; to know all the suffering they go through and not be able to do anything to take it away and to know that it’s only going to get worse as time goes on.
Parents are not supposed to watch their children suffer and die! It’s not right! It’s not the way it’s supposed to be! Unless you have personally gone through it you can never know the devastation and heartache of living this. You might try to imagine but until it actually happens you don’t know. It’s not something Roy and I ever thought we would have to face. The reality of this disease and the effects of it that we deal with as a family every day has changed our lives. We will never be the same. We will never be a “normal” family again. It’s something that is always with us, every minute of every day. This is a poem that expresses it well:
"This is not at all how
We thought it was supposed to be.
We had so many plans for you.
We had so many dreams
...And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan"
Stephen Curtis Chapman "With Hope"
This is not something we ever wanted but nonetheless it was given to us. To my own surprise I can actually say that in some ways it is a blessing. It has forced us to put our faith in Christ in a very real way. It has completely changed the way we look at life. Now we live with a constant daily reminder of the fact that life is very short, it could end any time, and if you’re not living for and focused on eternity it’s a waste of life. Everything in this world is temporal except for people. We have to put our trust in Jesus for our finances, bills, comfort, peace, our very lives and the lives of our children. We're not allowed to deceive ourselves into thinking we can handle things on our own and be self sufficient anymore. It has caused us and our children to have a dependence on God and a compassion and understanding for others going through heartache that I don’t think we could have had before.
Those days shortly following Wesley’s diagnosis were some of the hardest in our lives and there are times where it is still very hard but it has also been amazing to watch as God has cared and provided for Wesley and our family. He has and continues to protect us and bless us. He is our stronghold and comfort in times of trouble.
Wesley is a very energetic and outgoing little guy who has never known a stranger. If someone is feeling down and a little sad Wesley naturally notices and will do anything he can think of to help make them happy, including singing and dancing. He is such a good sport when it comes to doing his treatments of which he must do a minimum of 2 and half hours a day, and taking all his medicine including about 40 pills a day just to digest his food. Wesley’s encouraging personality is one of the things that has kept us going through all of this.
His younger sister Evynn and a younger brother Ethan do not have CF. It is so sweet to watch the three of them grow and play together. We treasure the time we have with all of them and are so blessed to be the parents of these precious little ones!
Our hope is that medical research will discover better medications and that one-day CF will stand for “Cure Found”. We are now learning all we can and using this website to build a team of friends and family to help raise money for research and to pray for and encourage others with this terrible disease.