Today I hate……..And that’s OK

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Today is one of those days. It’s a day the ugly disorder sticks its head up and reminds me that Mel does have Spina Bifida. She is different, disabled and ……. These days come and go as do the moments of life. Some days are better than others. I can describe it kind of like a pendulum. My emotions sweep back and forth. Sometime with such volition that I am lost in this unknown place of special needs parenting.

In the beginning, the emotions swayed quickly and with such intensity. No parent wants a sick or disabled child. This life is different and can be rough. I tend to hide my emotions.  I try to pretend all is ok, that Mel is fine, that I am fine, that the hospital stays are  just  short vacations. The doctor visit just a trip to the Mall. Well guess what. Some days its hard. It’s hard to pretend. You can’t pretend all your life. I am who I am and my child is my child and it hurts and I’m confused. Sometimes I just want someone else to make the decisions. Sometimes I just want to be a mom. Sometimes I just need to be angry, sometimes I am sad, sometimes I’m just tired and that’s OK.

I recall the first night, alone in the hospital. It was dark that night, that’s about all I remember. I was grieving, confused, shocked and felt so alone. When the sun came up the next morning, I was in auto mode. I was in auto mode for sometime. I was trying so hard to be brave and not let the world know how afraid I was. I had always been the strong person, the strong daughter, the strong sibling and the strong wife. Able to take charge and lead. It would have been easier if I had at times, expressed all these emotions. Not kept so much to myself.

Early on, my anger was so intense and it was combined with grief. I had lost the child I dreamed of and thought of for nine months. I still have days when I mourn that loss. They became less frequent as Mel got older but I still find myself pondering the what ifs. The what if she did not have spina bifida? What if her lesion was just a little lower? She is not the child I planned and thus in many ways, I grieve like a parent who has lost a child. I think it’s probably a different grief as those who have lost but also a little the same.

Fear also creeps into my days. Fear of the unknown. When she was born, and I was first told of the disability, I could not recall a single child I knew who had spina bifida. Because of my special education background, I knew what it meant; or should of. But I recall not really thinking initially. When I look back now, I did have a child in my class with spina bifida. I can recall his face, chubby, glasses, wheelchair. In those first days, I think the fear of the unknown and the denial of reality, kept his image at bay. I do not know if I could have dealt with this knowledge initially. This fear was probably what drove my initial need to learn all I could. However; I did not start this search for knowledge right away.

Initially I was so busy, so busy just trying to maintain status quo. To busy to process and to busy to breath. So many doctor visits coupled with so much anger, fear and denial can be a bad thing. I was so glad for my support net work and yet, their response often confused me even more. In those early years, the people I knew were also afraid, confused and unsure. This lead to hurt feelings as they to were struggling to figure out what was going one. At one point, my mom requested, “Tell me what you know, tell me what to expect” She knew my job and assumed I was pulling and moving on past knowledge but I was not. I was just moving in a cloud. Unable to connect both worlds.

I do recall being in what I now call “Doctor Withdrawal”. I do not know at what age but I remember waking up in a panic. I was not able to remember where I needed to take Mel. Surely she had a doctor appointment. When? Where? With whom? For a week, I moved about as if I was missing something. I was probably my first month without a medical appointment for Mel. I was really lost that week as Mel had been my total focus and was consuming so much of my time that not having to go and sit in someones office was an unreality.

Disappointment and rejection creep into the emotion bag now and then. In America the perfect child, the smart, athletic child is the one on the pedestal. In Texas, kids are even held back at a very young age so they can be a little stronger, smarter, more skilled. We red shirt freshman in college so they can play one more year, be stronger, be the top dog. You sit in the park and hear the conversations next to you. I’m so angry Sally did not make this or that team or I’m so disappointed in Billy. I know he is better than so and so. The conversations and whining about how your child did not make the top this or that or how busy the parent is running from event to event. Sometime I still have to get up and walk away. To breath. Did they not realize their child had that option, some parents rejoice in the fact their child is alive. That their child can sit up, feed themself or has just learned some stupid skill; when the typical child mastered that skill so many years earlier.

I wonder if I treat Mel differently than her siblings. I do. I expect more, give less but then at the same time, help more and expect less. No, I’m not a bumbling idiot. I push Mel as I know/think she needs to push herself. On the other hand, I know it takes her longer and her life sometimes must suck for her. So I struggle with making her do and helping. This constant battle of when to push and when to hug. When to allow modification and when to say, “Buck up and get it done”. It’s an emotional roller coaster for all.

I hate when I hear phrases such as “I know how you feel” or “God gave you a special gift”. Or “God never gives you more that you can handle”. The world of special needs parenting is no picnic. If you do not have a special needs child you probably do not understand and Yes, I did get a life I sometimes can barely handle. But guess what world, your child and mine have only a moments difference. In a moment, you to could be in my world. It only takes a moment to get hit by a car, to fall in a pool or have a car crash. I wish this life on no one. Yet, sometimes when you look at my child with pity or make some stupid comment, or belittle my emotional state, I wish you would think about that. What if this was your child?  REALLY. Is that how you would want me to treat your perfect angle? Who is not perfect by the way.

Walk in my shoes by V. Zicafoose
Walk in my shoes just one step,
you will feel my pain and how I have silently wept.
Walk in my shoes just one foot,
you will feel how I struggle every day to stay strong and be tough as wood.
Walk in my shoes, just one yard,
you will feel my heart ache and be able to empathize how some days are truly hard.
Walk in my shoes, just one mile,
you will feel the frustration I feel in having to keep a phony smile.
Walk in my shoes for a day,
you will suffer the pain I feel,
when the judgment you subtly pass is so obvious to me.
Walk in my shoes for a week,
you will then come to realize how much respect you really have for me.
No need to walk any further,
for you are able to step out of my shoes.
You will now know all the struggles it takes to survive
and all the stress that is juggled.
Before you judge me, just try a walk in my shoes,
even if it is for a moment.

For you will never know when you will be wearing the same shoes too.

I truly appreciate all who have helped Mel and supported me in my journey. I so apologize for the days when Spina Bifida rears it ugly head and takes over my emotional state. I do have days when I’m still grieving for the loss of who Mel was supposed to be. When I am angry, afraid and unsure of which path to take. Sometimes I wish the world would just look into my face and realize that today, I am pretending, hiding and lost. On those days, I do not need a new home program or to hear about your struggles. I just need you to listen and nod. To hug and be silent. To allow me to be angry, grieve and ………..

Tomorrow will be another day and then I can join you in the joys of raising a child. The joys of being a family. The wonder of moving just a little slower to smell the flowers and watch the ice crystals melt.

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