Being a Mom to a child with Down Syndrome

Beth and Leah

There are things you just don’t talk about as a mother of a child with Down Syndrome.  There are things you just don’t say out loud.  People think I am strong, people think I was chosen to be her mother, people think that I do a great job at being her mom.  But there is a truth that no-one knows, an underlying layer that is waiting to be exposed into the cool air.  But I can’t say it, I can’t show it, I can’t be vulnerable, I won’t be.  There are things that you just don’t get, things that you just don’t know.
Most days are good, most days are great but there are days when I cry, I cry so hard it hurts to breathe,  I cry until my eyes are red and swollen, I cry until there are no tears left to cry.

You wouldn’t know that I worry all the time.  I don’t sleep most nights, because I lie awake worrying. Worrying about what is going to happen to her when I am gone.  I worry about who she will become, will she have a job, will she meet a boy, will she fall in love, will she get married, will I ever have a conversation with her? These questions just race through my mind all night long.

You would never know that I continually doubt myself and everything I do. I should do this, I should have done that.  It’s my fault she’s not doing x, y or z.  If only I had done this. Maybe I should do this or try that.  It is a constant battle in my mind.

You would never understand that I just need friends.  Friends who can help me escape my world for just a bit, friends who can make me laugh and smile.  I need friends who understand, I need friends who will call me or text me because the likelihood of me calling or texting is very slim although I do try. My time is consumed by all this special needs. It makes me so happy when my friends accept my daughter and treat her like a little girl because that is what she is.

You would never understand that I need to control the environment we are in or going to.  Loud noises, a lot of people in a small space can and will scare my daughter.

You would never understand that I need my family, all of them, near and far.  Most of them unfortunately have turned their backs on me since having my daughter which is very sad and heartbreaking. I need family more than ever now.

You would never know how much little things mean to me, the fact that my child has said a 2 or 3 word sentence is like she climbed Mt.  Everest.

You will never know how much it hurts me when you ask if I will ever go back to work, or if I am going to “do something to make money”  or when people tell me what other people are doing for a living. I loved teaching, I miss teaching but this is my job, it will always be my job.

You may never understand that I am never going to ask for help, ever.  It isn’t me to begin with but it certainly isn’t who I am now.

You will never understand that I just want to feel normal, a normal mom, a normal family, I want to just live my life with my husband and wonderful kids and be happy.

Speaking of being happy, you will never understand the pure joy and happiness my little princess gives me everyday.  She has a genuine happy personality, she doesn’t judge, she just loves unconditionally.  She can make you smile ear to ear and make you laugh until you cry on most days.  I am lucky to be a part of her life, lucky to be the one she calls mom.  Though my life isn’t “normal” or perfect.  I love each moment, the good and the bad and I wouldn’t have it any other way.

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MyHandsAndHeartAreFull

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