Sunday, June 15, 2014

Joy and Happiness Part 1: Happiness and health

I've written this post in my head many times, almost since I started this blog. It may seem like an odd time to be sharing my thoughts on this happiness given that I've written how crazy and stressful life in our house is right now, but it has come up too offer recently in my news feed for me to ignore. There are many thoughts I want to share, more than I could put into one cohesive post, so it will be written in multiple parts. Today I share my thoughts on how happiness can be affected by health, esp. the health of our children.


With each of our pregnancies, Papa Bear and I chose not learn the sex of our baby until delivery - no small feat to accomplish with monthly ultrasounds! But since I'm considered high risk by my OB, and little about my deliveries is left to chance, we wanted to leave this as an unexpected surprise to get us through the labor process. Ironically my gut instinct was right both times, but I do not at all regret our decision either time.

The only downside was two entire pregnancies of people asking "What do you want? What are you hoping for?" Bringing up that question on a message board or Facebook group can bring about quite divisive results. You'll have people who will say they have a preference for one gender or another, for a variety of reasons. You'll have those who chastise them with admonishments that every child is a special gift from God, and they'll be fine with whatever he sends them. There are those who have carried the cross of infertility and/or miscarriage who just want a baby to take home.  And there are those who don't have a preference either way. One common refrain, though, among all those who have no publicly stated preference is that they just want a baby who is healthy. I respect their point of view, esp those whose arms have been empty for far too long, but it's an answer that I find bothersome. Gender didn't matter to me in either pregnancy, but wanting a healthy child wasn't at the top of my list. Because from my point of view, healthy is overrated.


Lately I've seen a number of news reports going around about former Olympic swimmer Amy Van Dyken being in an ATV accident which caused a spinal cord injury. And every time I read one, I can't help but feel frustrated by the comments. Yes, I am sorry to hear it; it's not like I would wish a SCI on anyone. I know she will have a difficult and painful road ahead of her. However, it bothers me to hear people talking like it's the end of the world for her. People with SCI, esp a lower level injury like hers, are every day living active, happy lives. While I may stay home with my children, many are out in the workforce. We travel, we volunteer, we're athletes, we raise families. We form and sustain loving relationships. The adjustment period is not without challenges, and there will always be times of momentary frustration when struggling with a formerly simple task, but I've also seen many blessings come my way specifically because of my disability. Was this accident unfortunate? Absolutely; but that doesn't mean there isn't a bright future ahead of her.

I don't think of myself as someone who is "sick", but at the same time I know I don't meet most people's definition of healthy. I am in a wheelchair due to a non-traumatic spinal cord injury. Multiple autoimmune disorders affecting my metabolic functions, combined with my physical limitations has left me about 80 pounds overweight. I take multiple daily medications to keep my body functioning well, and have many more aches and pains than most people in their mid-30s. These issues may be part of my personal baseline normal, but I know they are far outside the parameters that most people place on health. And yet, I am quite content with my life as it is today. I often have people say they think I'm so amazing, such an inspiration, they could never do what I do on a daily basis. I appreciate the compliment but at the same time the whole conversation makes me uncomfortable. 

For starters, I'm not that amazing. I'm just a regular housewife, taking care of my home, husband, and children. Going to a doctor's office, shopping, or church are really not that inspirational activities. And if placed in my situation I do believe they could do what I do; because it's pretty much the only thing you can do. Wallowing in self-pity is only a viable option for so long. And once that time runs out, there's really nothing else to do. You can't hide from it, paralysis will follow you everywhere you go. I suppose you could push the people who care about you away, but this will do nothing to improve your overall situation, and in the long run make things more difficult. So the only thing you have left to do is pull yourself up by the bootstraps and figure out how to live within your own personal sense of "new normal". I'm nine years post-SCI, and there are a few things I'm still trying to figure out how to do more normally (trying to mop without leaving tire marks!) but all in all I'd say we've made a pretty good adjustment. Papa Bear and I have maintained a loving marriage, I've given birth to two wonderful children, I get to stay home with them each day and educate Sunshine while working on therapeutic activities with Fidget. We may not have as many luxuries as we would sometimes like, but all of our basic needs are met, and many of our wants, so what more do we really need? But even if I don't see my own life as remarkable, I'm glad that my willingness to embrace my disability and love my life can be a testimony to others, and bring them hope. 

I have seen firsthand the joy that a child with physical or developmental challenges can bring to those who love him or her. A friend's son who was diagnosed with Down syndrome at birth. Another friend whose daughter has a mitochondrial disease. One whose daughter suffered a brain injury after a lack of oxygen due to choking on food. In my career before becoming disabled I helped care for children with cancer. And I've met many children even before Fidget was born who have autism or other cognitive impairments. I understand that the prospect of having a child with chronic, or even terminal health concerns is scary, and overwhelming. There is fear of the ability to physically and financially care for that child, and worry of how those burdens will affect the other members of the family. But I have never known fear to be a good influence in making decisions. Some may have trouble communicating their thoughts, but they all think, feel, and love. They are loved in return. And they can take their joy and laughter and spread it to others.  Does a disability or chronic illness mean that the individual no longer has anything to contribute to their family and society? Not at all.

After Fidget was diagnosed with autism, a friend jokingly said to me "I bet you wish you'd prayed for that healthy child instead of just a happy one." But they could not be more wrong. I know some people have an issue labeling children with developmental delays, because they are more than their condition. And yes, Fidget is more than just a child with autism, just as I am more than just a woman with a spinal cord injury. But at the same time it is part of who he is. I cannot separate him from his autism, and it is one of the things that determines how he experiences life. 

Last night after not being satisfied with what was on his dinner plate, Papa Bear went to get a container of blackberries from the fridge. Fidget stood up in his booster seat, bounced up and down with his hands in the air, cheering "bay-ees, woo-hoo!" When he is upset, things related to cars, trains, and fire trucks can almost always calm him down as they are the current subject of his fixations. He loves crunchy and strongly flavored foods, he loves to touch as much as he can, and he loves to move! The way he perceives all of his five senses is shaped by the way autism affects how his brain processes sensory input. So if it weren't for his autism, he wouldn't be who he is; he would be a totally different child. Could I love that child? Absolutely. But I don't need that version of him because I love the berry-loving, vehicle-obsessed one I already have. He is the best possible version of him, and I get the privilege of guiding him to become the best version of him possible. And in that he helps me grow and become a better version of myself. Being his mother has challenges, but is something I could never wish away.


Seeing the value of life when health may be affected, my ultimate wish during each pregnancy and for the rest of their lives is that my children be happy. As a Christian mother I of course pray they accept and live the love of Christ and receive eternal reward in heaven. As a Catholic I pray they follow the teachings of our faith rather than straying from it. I hope they achieve at least enough financial success that they don't have to struggle; money may not buy happiness but it can provide a sense of security. But most of all, I hope they find the things in life that make them happy, and enjoy them to the fullest.

I don't know if my body will be able to withstand future pregnancy, or if it would be in our financial cards to adopt and raise more children. If not, I'm content and happy with the children I have. If our family does grow, my wish for those children would be the same as any of my others; whether boy or girl, able-bodied/minded or disabled:

Love the Lord, find a means to provide for yourself and your future family, and be happy.

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