To Understand

Maybe it’s the feeling I have today. Maybe it’s just something that needs to be said. Maybe it’s just therapeutic for me to write this out. Maybe it doesn’t have to have an underlying reason at all. This post is not meant to be an open invitation for a pity party. It is not meant to offend anyone. It’s not meant to be negative or depressing, just truthful. It is meant to hopefully open eyes. This is the story.

Everyone who reads this blog knows Emma. Most people know our story about having Emma and not learning that she had Down syndrome until her birth. The last 7 ½ years have felt like an eternity in some ways, but certainly an eternity filled with a lifetime of wonderful stories, memories and important lessons about love and compassion. Join me as I fast forward 7 ½ years later… to now. I tend to share her witty sayings, her funny comments and her amazing accomplishments often, so today I am going to take you to the inside. The inside of our world of Down syndrome.

Most don’t realize what it takes just to get through a normal day with Emma. It is our “normal” but one that would likely exhaust most. It exhausts me. Daily. When you peel away all the regular layers of daily living (working a job, two carpools, grocery shopping, running errands, housework, laundry, sports, school and homework for Drew, cooking dinner, packing lunches and book bags, etc.) there is still so much more to be done. You see in our world, life doesn’t stop once all those daily tasks are completed. In fact, a lot of days these simple daily tasks aren’t even accomplished. At the end of each and every day, we still have a daughter with Down syndrome, with moderate cognitive, speech, fine and gross motor delays, mild sensory issues, obsessive compulsive disorder, and a very long list of idiosyncrasies. There really isn’t anything she will do on her own unless we are standing right there with her. She is unable to take care of her needs, unable to bathe herself and has to be guided every step in everything that she does…at almost 8 years old. She is a constant shadow, always at my side and it never ceases. She can not be left alone for more than a few minutes at a time, without knowing where she is and what she is doing. It takes her twice, if not three times or more, as long to do anything a typical child can do. I can sit and talk all day long about her many positive abilities and how she is mainstreamed this year, but at the end of the day, Emma is still Emma. A child who requires so much more in life due to her disabilities. Yes she is the love of my life and I will do anything for her. Yes she brings so much joy and has infected so many people with her personality and witty ways. Yes she had molded me into the person I have become. Yes she has added more value to my existence than I ever though possible, but these things have come with a costly price- a journey that is a long, exhausting one.

Most who know Emma see her with all the layers on and tend to overlook the many obstacles that define the person she is. Though I want people to see her and know her for HER, the obvious can not be ignored either. We parents of children with special needs are taught to focus on the positive, stand up for their every need, highlight their abilities, fight for inclusion if you want it and never give up hope. That is how I spend 95% of my time, but the other 5% is the realistic, harsh truth filled with multiple unknowns of what the future will hold for my daughter. That 5% (more like 100% but I choose to let it consume me 5%) is filled with her sitting at home most every weekend, asking me every 5 minutes if she can go somewhere and do something and see someone. Obviously I can’t tell her there isn’t anywhere to go because she hasn’t been invited by anyone to do anything so I usually make something up or spend my only day of free time coming up with activities for her so she won’t be alone. I live to see her happy and when she is with other people, she is happy. So, that’s usually how I spend my weekends while everyone else’s children are having sleepovers, play dates and birthday parties or imagine this…actually playing on their own in their rooms. I’m not going to sugar coat it; it’s a very lonely, sad thing to endure way too frequently. It is life with a child with special needs. And I would like you all to know this.

Most everything is a battle and when I say most everything, I do mean most *everything*. Fighting with insurance companies to approve therapy coverage, getting her to do her homework or just write one stinkin’ letter of the alphabet, fighting to keep her mainstreamed in a regular classroom, the seven year wait for CAP services, the roller coaster in finding the appropriate people to work with her in both educational and recreational settings, the tons of doctor’s visits, finding strategic ways to get her to take her daily medicine, getting her to dress or undress herself or just put her shoes on. Not taking 30 minutes just to get out the door each morning, pushing her to read those few sight words before she says it’s too hard, the stacks of paperwork I have to fill out constantly. The list goes on and on. And that list includes most every simple thing most people take for granted on a daily basis.

In her world, Emma needs 40 hours a day to fit it all in. I know sometimes, without realizing it, she feels trapped inside her own body. The whole world continues to move at such a fast pace and she is trying to keep up with those who don’t even understand what it is like to be in her shoes. This is her life, daily. So many words are spoken so quickly, with not enough time for her to comprehend and process them all.

You see her as being stubborn, when I see her as shutting down because you are moving too fast or there is something she doesn’t understand. You ignore her but I see she can’t get all of her words and thoughts out fast enough so you brush over it. You see her as a challenge but I see her as a masterpiece, designed to help you become an expert in your field. You see her as delayed but I see her as taking the time she needs to soak it all in and achieve the skill. You see her as a nuisance when I see her as an opportunity to experience a different world filled with laughter just by spending time with her. You see it as frustrating when she can’t read or write the word, but I see it as a huge milestone once that word is finally written or spoken. You see her as time consuming but I see her as valuable, precious time. You see her as someone who requires too much attention to deal with, but I see her as being filled with joy by just spending time with you. Most people will never have the opportunity to truly understand and know Emma. She has a lot to teach you if you will just let her.

I close with this-do not feel sorry for me. It’s not about me. This is the life that was mapped out for me long before I had any control over it. I embrace it. Yes, it is very trying at times but I would never be who I am today if it weren’t for the blessing of Emma. This is about Emma. This is about helping HER and understanding what life is like for her and how you can help make that life even better if you are a part of it. Simply put, sometimes it’s the smallest things that mean the most.