Sometimes sadness fills my heart and my eyes begin to water

No words can explain the stress and the hurt

Times are always challenging with no time to let down your guard

Life is ever changing

You never know what each day will bring: joy, love, excitement

OR sadness, anger, hurt, or the constant question “why?”

No matter what I love my life

Even though it is so hard at times

The biggest hurt is the unknown

Of how long we will enjoy our girl

Each day she struggles to fight for life

But at what point may she say “why?”

I hope I will never see that day

And that the happiness never fads

I will search the world for the best things to help

No matter what the cost or what it may entail

You are the light that fills my heart

And I know that in spirit we will never part

Oh, Emily I love you so

Your strength and hunger for life is inspiring

Your heart and smile are so inviting

You carry yourself as though you know

That someday this will all be better

And we will talk of how much you endeavored

So remember the love I feel for you

As you fight your battles through and through

Life is ever changing.

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Some days it is hard to believe that I am a mother. I always wanted to become a mother, but the awe of knowing that you actually have a child of your own is so amazing. I never in my wildest dreams thought that motherhood would take me on the incredible journey that I am on with my two daughters: Emily and Isabelle. Even more so, I never dreamed that being a mother could have so many rewards and equally as many challenges. However, I would not change any experience that I have had with my daughters for anything else in this world!

As a mother of a child with many medical and developmental needs I struggle each day with the challenges that my daughter and the rest of our family face. There are some days when I think: “I cannot handle any more!” or “this isn’t what I had in mind.” Then there are other days when I think that I am so fortunate to have a daughter with so many challenges in life so that I can help enlighten the world with the knowledge that I learn from being her mom.

It is hard to have a child with special needs especially when there really is not a specific diagnosis or known reason for their needs. Our daughter, Emily, struggles daily with intractable seizures, cerebral palsy with hypotonia, global delays, and cortical visual impairment. She is not her disabilities; she is an enlightened spirit who has many challenges in the physical world, but the perseverance to accomplish anything she puts her mind to.

Since Emily does not fit in any one category for her disabilities it is hard for me to find total support from other parents who “get” what I am going through. I do find myself gravitating towards those who have family members on the autism spectrum because I feel a connection to the struggles they deal with everyday. Although Emily does not carry a diagnosis of autism, I feel that she had many characteristics of someone with autism. I also feel the same sort of pain that many parents seem to project when they have a child that has just been diagnosed with autism. I think that is one of the reasons why I am so adamant about trying any and every possible treatment to help bring Emily out or her mind and into our “physical” world.

I write all of these words to help me remember that life is always full of challenges. Challenges are really just opportunities to learn and try new things and ideas. Although challenges sometimes bring pain with them, they always shine through like a rainbow at the end of a rain shower. My daughters are my rainbow and the gift of having them in my life is my pot of gold at the end of the rainbow.