My Naked Soul

Well, I said I would be honest in this blog. As painful as it is, I agreed to show the truth behind raising a child with complicated medical needs so here it is. This will probably be the hardest blog I write but I’m going to chance it. After a long day of reflecting and a long sleepless night, I have come up with two reasons to share such a personal feelings and emotions with the world. Number one, others may feel the same and be unaware that they are not alone. The second reason being, this is a great burden to carry. One we do not show the world. We are expected to smile, dance and celebrate with the same exuberance as the rest of the world; however, they do not understand the black cloud with a shiny silver lining we have always hanging with us. Our highs are higher but our lows are lower. Yet, we must balance it out, not for us, but for the rest of the world. I hope to explain our “normal” a little more clearly and have people understand that it’s okay if we’re blue for a moment or brought to tears watching a boy with a walker learn to ride a bike. I want everyone to be feel freer to express their “normal.”

As most of you are aware of, Justice was born on Mother’s Day 11 years ago. This year her birthday again fell on Mother’s day. We have always tried to look at this as my Mother’s Day gift. In many ways, it was but in turn, I end up feeling a lot of pressure to only look at this day as a gift. I try to focus on her beautiful smile, the silly things she says, the almost heroic strength, fortitude and patience she has but I almost always end up on the edge of angry. It’s easy to say, “focus on the positive” but Mother’s day 11 years ago was a traumatic event for me. When I think of Mother’s Day, I can’t help but see a doctor sitting beside my bed fidgeting saying “Some moms just don’t go home with babies.”

Since then, yes, I’ve been blessed with higher highs than I could have ever imagined but they say for every negative comment or event it take four positive to counter it. I think it takes more than four to counter having to take care of a six inch wound on the back of her skull. Or the three times I’ve had to tend to the four inch wound from below her breastbone to below her belly button. Or the two + inch one on her back or the two inch one on her side. How many positive comments does it take to counter being covered in her blood? Or having whatever just came out of the wound from the last surgery just blast all over you?

I have had doctors say the nicest things to me. But, unfortunately, most of the time they either say nothing or they questions your motives for asking questions and frequently make you feel like you are an over or under reactive mother who is not taking care of her child very well. Then they unleash a wealth a demands, treatments and responsibilities without any regards or understanding that this is your child, not your patient. Aside from a cure for Justice, a true wish I would want granted for myself is to work for better education of doctors and other health care provider to what the parents actually go through.

Most of the time, I feel like I’m a walking antonym. As I sat in church yesterday, I looked at Justice and wanted to stand up and shout, “Do you see my daughter? Do you know how blessed she is? What did I do that God would choose me for such a special mission of His? Thank you, Father! Thank you for loving us and giving us the strength to survive this and not taking her from me this year. THANK YOU FOR NOT TAKING HER FROM ME THIS YEAR!” Then I see the healthy little girl in front of me and as my heart is still full of thankfulness, it is also full of anger. “Why do You do this to her? Why do You do this to me and Levi and Cy? What did we do to deserve this hell? I just want to buy her pretty dresses like those that that girl can wear. Why do I have to beg for her life so much? We all are celebrating here, we all go out to eat and yet, You make me beg every year. How many mothers sitting here are thanking you that You didn’t kill their child this year? I want to take life for granted.”

It’s not that it’s all one way or one way at one time then the other, it’s both simotaniously. The trick is to join the rest of the world and only let them see the positive or only a glimpse of the negative. We don’t want to be labeled a depressed or unstable. I wish people could realize that these are real, hard, traumatic events and sights that we have to deal with and God has given us real and healthy emotions to deal with them. For me, Mother’s day is hard even if it does happen to be the special occasion of Justice’s birthday every so often. I believe being a little depressed on Mother’s day is a natural thing given the circumstances. What would not be natural is if I went through all of this and it didn’t affect me or if I stayed in a deep depression over a long period of time.

If you do feel like the events of your life are weighing you down longer than what you would like, please, talk to your doctor about your feeling. There are many ways they can help but sometimes, like in my case, it’s just my life. It’s my moment to be weak. I can’t be supermom all the time and neither can anyone else. However, I hope this brings a little understanding of our highs and lows.

There are support groups that help moms with almost everything in their normal lives from parenting to breastfeeding. Yet, when it comes to witnessing their child’s skull, stomach, back or chest being cut open, there is basically nothing to prepare them for what they will see or the feelings they will encounter. I hope that someday this will change for parents. I believe it will also improve the relationship and communication between parents and health care providers.

I would love to hear your comments and ideas about this post. Do you have any support groups in your area? What ideas do you have? Have you ever supported a friend through a rough event, it doesn't have to be raising a child with special need. I just would like to hear how other can relate.