Life Is Not Always A Comparison Of Apples To Apples

Whenever I tell our daughter, Emily's, story to people I most commonly get a response of: "I don't know how you do it?" I am always puzzled by this response because I don't know how not to do it? I guess I could do nothing for Emily and she would have a poor quality of life, or I could put her into an institution, or we could just give up and let her wither away. But none of those options ever have or will cross my mind. Emily is our first child so I guess I didn't realize how life could be different until her sister came along.

Just like the dynamics of any family, our two girls are so incredibly different that there is no true comparison of apples to apples. So when I am asked by a friend or stranger the question of "how do you do it?" I simply reply that "my life has challenges just like theirs and that you just deal with what you have been dealt". I also remember that not one single person in this world totally knows what it is like to walk in my shoes and I don't know what it is like to walk in theirs. Although others may experience similar struggles, their life can never truly be compared to mine.

I appreciate empathy when times are tough and celebrate when times are great. I try to think of our life as being the 'norm' and that makes it easier for me to get through the tough times. So, no matter how similar a situation might seem to you just remember that life is not always a comparison of apples to apples. Reach out to those in need and tell them it WILL get better and show your support for their struggles. But please do not assume that you understand what they are going through for they are truly the only ones who know how they feel.

Parenting A Special Needs Child Is A Challenge

Oh, where do I even begin? Being a parent is definitely the hardest "job" I have even done. I always wanted to have children and thought that it couldn't be any harder than babysitting - right? Boy was I ever wrong. No matter what your child's challenges are it is difficult. I have people say to me all of the time "how do you do it, how do you survive the constant roller coaster ride, the lack of sleep, the unknown?". I say to them, "you just do it". I could give up as a parent and turn my child over to foster care or make her a ward of the state or even institutionalize her, but what good would that do? I am still her mother and would long for her, to hold her, to try to make things better for her, to love her unconditionally.

In our house each day is a new challenge. Our daughter, Emily struggles with intractable multi-focal complex partial seizures (wow that is a mouth full). What that means in laymen terms is that her seizures are not controlled by medication. And what that means to Emily is that she has to take five different seizure medications plus the Vagus Nerve Stimulator (VNS) that she has implanted in her chest and neck for seizure control.

In addition to the seizures Emily struggles with cerebral palsy (hypotonia), global developmental delays, cortical visual impairment, gastronomy tube (g-tube) and major sleeping issues. The cause for all of Emily's struggles is still unknown. She has gone through literally hundreds of tests to try to find a reason for her seizures and everything else. Nothing has been determined on a metabolic, genetic, or any other level to point to the reason for all this chaos in her brain and body.

Just like parenting our second child, Isabelle, Emily has her ups and downs. Some days I even feel Isabelle is harder to parent than her sister. Since Emily's diagnosis is consider idiopathic (no known cause) it makes it even harder for us to figure out how to treat things. We have no way to predict what she will be able to do or not do in the future. So we have to hold on to our hopes and dreams of what we want her to do. We have to stay positive and remember that life is like a roller coaster and is full of ups and downs no matter if you have medical struggles or not.

If you are a parent of a child with special needs then you know what I am talking about here in this blog. You also need to know that you are not alone in this battle and there is at least one other person who gets your pain. I have never said to myself "why me, why Emily". I have though be sad and even angry at the situation and sometimes even at her. This anger is normal and acknowledging it is part of the process of dealing with a child who's life is not what you had hoped it to be. Anger is not okay when it is directed at the child. I know that I said that I sometimes am mad at Emily, but it is more because I can't understand what she is going through and that upsets me.

Having a child like Emily has been a great blessing too. Without Emily I would probably still be on the same path in life I was before and not liking the career path I had chosen. Emily has opened my eyes up to the world of possibility and I have learned from her so many things. I don't have to remind myself how lucky I am to be Emily's mom. I know that she is here for a purpose and I am honored to be a part of that journey. When I think of Emily I here a song in my head. The song is called "In My Daughter's Eyes" by Martina McBride:

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

So when life is hard and you are feeling beat down by all of your challenges as a parent, remember it will get better. You have been chosen to be the parent of the special child and you are not alone on your journey.