I was raised with the belief that if we plan, and set goals, and work hard enough our lives will turn out exactly how we want. I was never a perfectionist. In fact, I was somewhat lazy, but I was smart and strategic and I figured out exactly how to do the bare minimum and still have things fall in place. I was a planner from a very early age, and lucked into everything happening exactly how I planned. I had a sense of control over my life because of this luck. I say it was luck because I have very slowly figured out that we cannot control every aspect of our lives. We can have what we think is a perfect blueprint for our future but then a few detours get thrown in just to keep us on our toes. I am just coming to terms with this as a 40 year old woman.
I was raised by a Philosophy professor and a middle school French teacher. It was a middle class home in Flagstaff, Arizona. I had as close to a perfect childhood as one can have. Flagstaff is a smaller city with an abundance of outdoor activities, and I was given a good amount of independence growing up. I could ride my bike anywhere. Expectations were high in my family. My brother and I always knew we would go to college. We knew we should do things in the right order (ie - school, marriage, children, etc). The question was never "will you go to college/grad school?" it was "where will you go to college/grad school?". I was a rule follower (still am, really), so I did what I knew what I was supposed to do, with all of the confidence in the world that my life would work out exactly as planned. Largly, it has. I went to college, fell in love, got married, went to grad school, bought a house, and had my first baby - in that order.
Everything was perfect. Then the rug got pulled out from under me for the first time. When I was 20 weeks pregnant with my first child we went to our first ultrasound, excited to see our baby. To my total disbelief, things weren't perfect. My baby had a large cyst in his brain, and possibly other malformations in his brain that couldn't be determined with certainty until after birth. My husband and I were upset and scared for exactly one evening. Sounds crazy, I know. We did some research online with the minimal information we had, and found a few hopefull stories. We took a walk and talked about our fear, and decided that of course everything would be okay. It always was for us. The rug had been pulled out from under us, but we had kept our balance. When Collin was born, the rug was pulled again. He was struggling to breathe and there was concern about his neurological status. He was transfered to St. Louis Children's Hospital NICU. An MRI confirmed that he had a large intracranial cyst and Agenesis of the Corpus Callosum. The second diagnosis means that the middle part of the brain - the part that connects the two hemespheres - never developed. We were told that Collin would likely be profoundly delayed, and might never walk or talk. We were devistated, briefly. Then we caught our balance again.
It quickly became clear that Collin was fine, in spite of the diagnoses. He was healthy and developmentaly on track. He was an easy, happy baby and toddler. So we decided to have another, and then another. Liam, our second son was a screamer for the first couple of months, but then became an easy, happy baby and toddler as well. We naturally thought that they were easy and happy because we were doing something right. Then we had our daughter, Alex, and she totally disproved that theory! She was a screamer for the first two years! We tried all of the tricks that had worked with the boys, and they did not work on her. It was rough, but once again we didn't lose our balance.
When Collin was 6 he started waking up in the mornings and vomiting. He would get sick once, and then he would be fine. He would go on to school and wouldn't have any further issues. Then, he started complaining about headaches. The occupational therapist at his school caught me in the hallway around that same time and said that she was concerned about his hand tremor. Hand tremor??? I had never noticed that!! I made an appointment for him with his pediatrician, who heard the symptoms and said "morning vomiting is hallmark symptom for high intracranial pressure". He scheduled him for an MRI at Children's Hospital. The very next morning, the pediatrician called and said that the MRI showed that the cyst had grown to baseball size, and he had scheduled an appointment for Collin with a pediatric neurosurgeon for that afternoon. That started our journey of 7 brain surgeries, multiple hospitalizations, medication, a trip out of state for more opinions/ideas. The times that Collin was in the PICU, we actually felt lucky. We would look at families who were literally living in the waiting room - they had pillows, suitcases, fans, etc. We could at least go home (we only live 15 minutes away). We all, including Collin, saw children in neighboring rooms code and die, and we felt lucky that it wasn't us. My husband and I felt extremely proud of Collin for his resilience, and honestly felt proud of ourselves, too. Our kids, including Collin, were thriving - doing well in school, had good friends, and were involved in extra-curricular activities. My husband and I both had good jobs. We had again and again kept our balance, or at least kept the appearance of balance.
Collin started having symptoms again recently. Things are different this time. His shunt is partially blocked. In the past this would mean a shunt revision and Collin would be on the mend. The neurosurgeon feels the risk of going in surgically at this time is too great. So, we are trying to manage symptoms with medication and basically waiting for Collin to get worse. Or better? We know the rug will likely be pulled out from under us again, but we don't know when. So, we are waiting for something bad to happen instead of waiting for improvement. A total shift in mindset.
I am aware that the appearance of balance isn't necessarily accurate. We do have a lot of good in our lives and in general we are happy and functional. However, I am realizing that my body, and my marriage, and my sleep, and my finances, are showing the signs of stress that I have refused to acknowledge. I have put on weight that I can't lose. I have digestive issues, sleep issues, and issues with my heart racing. I have been checked out by a doctor and I am completely healthy physically. These are apparently stress issues. My husband and I have had struggles that we have never had to deal with before. We love each other and know that we will be fine, but again these are stress issues. I am learning that planning doesn't mean perfection. The crazy and the messy parts of life happen even with good planning. These crazy times are valuable. These times are when we really get to know ourselves and test our resilience. These are the times that give us perspective so we can roll with the smaller every day frustrations like bad weather, cancelled plans, or missed trains.
I now realize that the only way we can continue to keep our balance is by owning our fears, our joy, our stress. This is my messy, beautiful life, and I love it. This is only my 3rd blog post. I had no intention of starting a blog until I read the book #CarryOnWarrior. I read the entire book in 24 hours and it not only touched me, it screamed to me. We all have a story. I have a story - and sharing my story will be therapeutic to me, and maybe even to others. Writing was all of a sudden something I needed to do, and I needed to share my writing. An amazing thing has happened with just 3 posts - people have come up to me at school pick up, at sporting events, at birthday parties, and in stores, and they have all said "I have read your blog. Thank you for sharing your story. Here is what is going on in my life......" People want to connect. I am happy to share my #messybeautiful life, and I hope that I can inspire others to share theirs as well.
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