My Road to Acceptance

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.