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Dear Mom Dealing With Your Child's Special Needs Diagnosis

I’ve been where you are, facing a scary unknown for my child. Nothing, nothing compares to the thick net of overpowering emotions that capture you as you deal with your child’s new diagnosis. Even if you suspected it.


I was pregnant with my youngest daughter when a level 2 ultrasound showed significant markers for Down syndrome. That happened a few days after I’d had a dream that my baby would be born with Down syndrome. We did not receive a definite diagnosis, but we knew it was a strong possibility. And yet, her birth is marred by the tears, the sadness, the anguish, the fear. Fear of the unknown.

What does her diagnosis mean to her? 
To our family? 
Will our family now be covered with limitations? 
How will this diagnosis affect sibling relationships? 
What will her future look like? 
What about mine? 
Will she live with us forever? 
Will she ever have a job? 
And why me?
Why me? 

There has to be a mistake, we cannot be one of those families that have kids with disabilities!

The pediatrician didn’t help. My midwife crying didn’t help. Hearing people say, “I’m sorry,” at least, to us, didn’t help. The message we seemed to hear from other people was, “This is bad, this is really, really bad.” And we had enough fear on our own, we didn’t need more fuel to the fire.

I don’t know the circumstances of how you found out about your child’s diagnosis, or if you are pregnant, if your child is an infant, a toddler, or a little older, but I suspect you might be wrestling with feelings and thoughts similar to mine. And it’s scary, it’s more than you can handle, it feels as if a vacuum sucked up all the happiness away from you. A nightmare becoming a reality.

I will not tell you that parenting a child with a special needs diagnosis is the same as parenting a typical child; it’s not. I won’t tell you that parenting a child with a special needs diagnosis is easy; it’s not (parenting never is). I won’t tell you that the challenges in raising a child with a disability are easy; they’re not. Parenting children with special needs does require a little more, and sometimes a lot more, depending on your child’s needs. But although this new life will be different, this is what I want you to know:

No doctor, no professional, no specialist can tell you what your everyday life will be like. Their expertise is limited to the medical field. Remember, a doctor sees the medical issues and emergencies, they only get to see a family in crisis or sickness or maintenance, they get to experience the worst case medical scenario. And while your child might face some medical issues now or in the future, your child is so much more than his/her medical diagnosis. Let me say that again, your child is so much more than his/her medical diagnosis.

Your child is, first of all, your child.
Your child will have gifts, 
a sense of humor, 
a personality of their own, 
a favorite color, 
a love for certain type of music, 
a favorite toy. 
They will be a person, their very own person, just like you and just like me. 
An individual made up of so much more than a diagnosis.

I know the diagnosis feels so big right now, but it won’t always be that way. It will get better. You will peel the sadness away, layer by layer. The lost dreams will be replaced with new dreams. Yes, you will have new dreams for your child! Your child will open up a world to you that will surprise you, it will be better than you imagined it would be. Your child will enrich your life, and the life of his/her siblings too.

See, unless someone else has walked in your shoes, nobody can tell you about 
the smiles, 
the celebration, 
the joy, 
the abundance of love. 
But I’ve been where you are, 
and I can tell you the light will come, 
joy will show up, 
love will take over. 
This fierce, deep, strong love.

Besides, nobody can tell you what your child’s sense of humor will be, or how his laugh will be deep and strong and make you laugh too.

Before my daughter was born, I really didn’t know much about Down syndrome, but the truth is I really didn’t know much about her either. I didn’t know that she would love to get in bed with me on Saturday mornings as we sip decaf coffee together. I didn’t know that she would love to dance to classical music. I didn’t know that she would fill my love tank with her hugs and love. I didn’t know that she would surprise her classmates in kindergarten by reading their names. I didn’t know that she would teach us what celebration feels and looks like. Before her, I didn’t know that life could be so full. She changed me.

And I want to leave you with a sentiment that has become dear to me, because I have found this to be true in the special needs journey… And you will, too, my friend.

You will experience shades of color that you never knew were possible.

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