When I think of the word grief I think mostly about grieving once someone has passed, however there are all kinds of grief. I’ve been hesitant to label what I have gone through as grief, but that’s what it was. You see, I had a normal pregnancy with my son, everything was supposed to be fine with him. Then, minutes after his birth we realized everything wasn’t fine. We all say it, “ I don’t care if it’s a boy or girl, we just want it to be healthy”. But what about when they aren’t? We have to process that, and in doing so we go through the same stages of emotions that someone who is grieving a loss goes through.
I started my process a little differently, I started with bargaining. Our son was transferred right after birth to another hospital that could better handle his situation. My husband and I were clueless about what his initial diagnosis was or how it was treated and we wouldn’t be able to speak with his surgeon or get any type of answers until the next morning. I remember praying on the long drive to Lubbock that night “please God, let this not be that big of deal. I’ll do whatever you want just let them tell us the other doctors were overreacting.” Well, the next morning we learned it was actually more sever that the other doctors lead us to believe. My bargaining was over and I switched right into depression.
I didn’t realize it at the time but I was severely depressed while my son was in the NICU. People would try to comfort me, but usually they made it worse. On top of that, you really do realize who your true friends are when you go through an ordeal like this. My heart was broken several times during those 9 days by people I had truly counted on. I couldn’t see the good in anything. Diagnosis after diagnosis came and I felt myself check out a little bit more with each one. And when the day came for him to finally go home I wanted so bad to be happy, but I was sad and terrified. Of course, I didn’t tell anyone that. What would people think if they knew I wasn’t totally excited about getting discharged?? When we got home, my husband had to get back to work and my mom had to go back to California. I was on my own with this little baby that I didn’t think I could take care of. I cried a lot over those first few weeks until my sadness turned to anger.
There wasn’t a definitive moment when I went from depression to anger, I think it was gradual. But I was angry for a long time and angry at just about everything. I spent the majority of my son’s first 18 months being angry. I was angry that we were in and out of doctors offices and hospitals. I was angry he had to go through so many surgeries. I was angry at myself because what was wrong must have been my fault. But most of all, I was angry at God. Why was he putting my son through so much pain? Why was he doing this to my family? After everything I had already been through, why couldn’t I just have my happily ever after? Hind sight is always 20/20 and looking back I know that God never left my side even when I was screaming at Him. He allowed me to take it all out on Him, knowing that at that stage of my walk with Him I needed the emotion of anger to make it through that time in my life. I would get past my anger and it would bring me closer to Him in the end. God stayed right there with us, helping us to find the best doctors and set my son up for the best possible outcome. And around the time of my son’s 4th (and hopefully last) surgery I moved on from anger and into denial.
Y’all, I spent about 4 years in denial. I told myself, he had all the surgery he needs and now he is just like everyone else. I told myself that he wouldn’t have special needs as time went on and that no body would need to know about what had happened because he was healthy now. I was able to stay in denial so long because he was “healthy”. We still had lots of doctors appointments but they were just to monitor him. Any issues that did come up, I had chalked it up to age and he would outgrow it. However, my world came crashing down around me again shortly after he started kindergarten. He missed more school than other kids simply because he has bad days where being at school is far from ideal. It also takes him longer to get better from simple illnesses like the common cold. He did need extra help, he did have special needs. It was time for me to face reality. I started to research more and more about what it was he needed to be successful and through that research I finally found acceptance for what his future holds.
I learned what tools I needed to be able to fight for him in school and I learned what his (and my) limitations were. I was able to find stories online from adults with VACTERL and their stories have helped me to understand how to be a better mother to him. We have developed wonderful relationships with his school nurses (who by the way are AMAZING). I learned that sometimes we have to ask for help and it’s ok to get that help. Right now my son doesn’t think that he is that much different than any other kid. He doesn’t know he has limitations and I pray he never does. I pray that he is able to do everything he dreams of. But one day in the future he may have to go through all these same emotions about his diagnosis and I pray I am able to help him get through the process a lot quicker than I did.

Seven years ago today I woke up anxious and excited. Today was the day our baby boy was going to be born. My husband and I gathered our things and took the two minute drive to the hospital in the little town we were living in. We had every anticipation that everything should go smoothly. All tests, ultrasounds, etc had been good and I was now 1 day late and ready for him to finally be here! Labor and delivery went relatively smooth and at 4:49 pm our son was born. All that pain disappeared, I felt relief, joy and love. I held him for only a few seconds, so quickly that no photo was even taken. We noticed his first birth defect right away but the doctor assured us that it was more common than most realize and that it would be an easy surgical fix once he got a little older. I was nervous about it but other than that he looked healthy so I tried to relax. The nurse took him to be checked, then stated he needed to be checked more throughly in the nursery. I was so exhausted that I really didn’t give this much thought. Little did I know, one of the best days of my life was about to become one of the worst.
Shortly after he was taken to the nursery, a nurse came into my room with food and water. I was told I needed to drink and eat as much as I could. This seemed really strange as my epidural still hadn’t worn off and I wasn’t even thinking about food. What I know now is that she was trying to give me strength for the news I was about to receive. About 10 minutes later the pediatrician walked in to our room and shut the door. We knew instantly something was wrong. He introduced himself then started to explain that our son had a condition that needed to be corrected ASAP. The closest hospital that could treat him was in Lubbock, 100 miles away, and they were sending a helicopter for him and we would not be able to go with him. He would need surgery right away and we would be there 2 to 3 days. My doctor agreed to discharge me 4 hours after birth so that we could make the trip to Lubbock. Then 10 minutes after the doctor had left our room, he returned to tell us that the helicopter would not be fast enough and the hospital had decided to send a jet. I was in total shock, devastated, confused. In a matter of an hour I had felt every emotion possible and the next 23 hours would be no different.
While we waiting for the ambulance to arrive, we stood over our baby in the nursery. They wouldn’t allow us to hold him due to his condition. This is the most helpless I think I had ever felt, my baby was hurting and I couldn’t even comfort him. I will never forget the sight of the transport arriving. Two transport nurses, two paramedics and a police officer. The police officer was there to escort the ambulance to the jet waiting at the airport. This site was terrifying, it was like something from a movie. I remember thinking this is just a nightmare and I will wake up and everything will be fine. They immediately went to work placing what seemed like a million tubes and wires preparing him for transport. Then they placed him into a “baby box” and wheeled him into our room to say goodbye. This is the moment I remember shutting down. I emotionally could not handle turning my two hour old baby over to complete strangers to take him 100 miles away from me. I remember very little of the next couple hours while we waiting for me to be discharged except that it felt like a lifetime!
Once I was discharged, we rushed back to our house to pick up a couple changes of clothes then we hit the road to Lubbock. The drive was painful, both physically and mentally, just think about sitting in a truck for an hour and a half within a few hours of given birth. I was miserable and I just wanted to be with my son. Once we arrived the nurse took us back to see him. It was very late at night at this point and it was past visiting hours in the NICU but they made an exception for us. We could only stay a minute and it was so hard to leave him there, I just wanted to stay with him. He looked so alone in the little box with a tons a tubes and wires. But we had no choice and went to check into a hotel and that night we cried ourselves to sleep.
We slept only a couple hours then headed back to the hospital. As soon as we arrived at the hospital, his doctor met us at the door to the NICU and pulled us into a meeting room to discuss his condition. We learned that they would operate within the hour and that through testing overnight they had discovered yet another birth defect. My husband and I felt defeated and guilty, like we had done this to him. After the meeting we were taken to our son. They were prepping him for surgery and since they were about to move him from his box to a surgical bed, we were finally allowed to hold him for a minute. Finally some happiness! But it was short lived and we walked with him down to the elevators and watched the nurses and surgeon take him off to surgery. At just 16 hours old he had the first of four surgeries. After the surgery, we were told that it went well and our baby was so strong he was trying to wake up during the surgery despite the anesthesia and pain killers. To this day, he is still the strongest person I know!
Due to everything that happened that day, his birthday is an emotional rollercoaster for me. His birth is definitely something to celebrate but at the same time, the day he was born was traumatic. I cannot think about how far he has come without thinking about where it all started. These memories are painful and because of that I always need a moment on his birthday. Over the years I have discovered that if I do not do this, the moments will find me and usually at the wrong time. I find a moment where I can be alone without judgement. The first couple years I tried to talk with others about my feelings, however people who have not experienced something like this have a hard time understanding what it feels like. I was usually told to focus on the good, and while I know people mean well by saying this, it just made me feel guilty for the feeling I was having. I now understand that my feelings are normal and that if I just take a little time alone, I can focus on him the rest of the day. We made it through that day by the grace of God and we know that God is going to use our son in amazing ways because of all this. As I remember that day, I cry, then smile through my tears, then wipe them away. Now it’s time to CELEBRATE!

When our son was born with multiple birth defects my husband and I made the very important decision that we would not give people details about our sons condition. We would talk about his VACTERL but not which letters he had. It would be need to know only, and very few people were told. We made this decision to protect his privacy, but also to insure that he would not be defined by his diagnosis. This happens all to often in our society today, children and adults alike become what they have and not who they are. That’s not what I wanted for my son. I want him to make his own path, create his own legacy. Shouldn’t we all be given that opportunity in life, to define ourselves? I refused to let VACTERL define him. So for the last 6 years we have kept his day to day issues to ourselves and we remind him almost daily that he can be whoever he wants to be.
A few months ago I was struck by some serious irony, for the last 6 years I have tried so hard to keep my son from being defined by his rare disease, that I had become defined by it. I was a rare disease mom. In that moment, I felt devastated. My days revolve around medication times and schedules that must be kept. I go into panic mode when someone from his school calls, my brain always goes to worse case scenario. My relationships have all changed as well. While I feel that it brought my husband and I closer together, it separated me from most others. I struggle to relate to people and feel people don’t understand me anymore.
Of course, I wouldn’t change any of this. I know that God has a purpose in it all but this realization left me troubled for months. You see, our society tells us that our children shouldn’t define us. As women, we should “want more”. I’m supposed to want to work outside the home, have lots of friends, go on girls weekends, etc. I have had several people ask me when I plan to return to the workforce. This caused me to take a serious look at myself for the last few months and you know what I found? My life can be hard, but I was happy until society told me I shouldn’t be. I found that my happiness comes from watching those closest to me, my husband and sons, experience happiness. I don’t just love to cook, I love cooking for them. I don’t just love to travel, I love to travel with them. Every sentence I started with “I love” ended with “with/for them”. There may be times I hide in my bathroom crying because I wish things were easier for my son, but then I cry happy tears when he does something we never dreamt he would be able to, those moments define me. When my oldest helps his little brother without being asked or stops to help a stranger, those moments define me.
I have discovered that God created me to be a caregiver. He created me to be a wife and a mother. He gives me the strength daily to be a mother to not only a teenager, but also to a first grader with a rare disease. It’s a toss up which one needs more strength and prayers lately. I didn’t chose this life, just like my son didn’t chose his, but it’s up to us on how we handle it. I have decided to no longer hide what defines me, and I will do this without compromising what defines my son. I will continue to fight for him to be able to define himself. This may be his journey, but God has made me his guide. I’m not the perfect wife and mother, nor are my husband and children perfect. But at the end of the day, at this stage of life, I am proud to be defined by them.

I thought I would start this by telling you a little about me and why I am starting this blog. I am a mom of two amazing boys (ages 16 and 6) and a wife to a wonderful man. We live on a Texas cattle ranch that has been in my husband’s family for several generations. I was born and raised in the city and never dreamed I would be living the ranch life but I love it! We are very private people who like to stick to ourselves. I’m not really big into the whole sharing thing, so starting this blog is way outside my comfort zone. So why am I doing it? My youngest son has a rare disease called VACTERL. The odds of having a child born with this is around 1 in 10,000. I have never met face to face with another person who has it or has a child with it. There are a lot of struggles that come with raising a child with a rare disease, one of those is feeling very alone. I have decided to put my story out there in hopes that someone who is going through this same thing will read this and not feel so alone. While I won’t be discussing my son’s daily struggles, that’s his story to tell when and if he chooses, I will be talking about my own difficulties that go along with it. My pain doesn’t come close to the pain he experiences, however being a caregiver to a medically complex child can be overwhelming at times. I hope that people can read this and know that there are people who understand what they are going through.