A Very Special Q and A

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The following correspondence was condensed from it’s original forms. After talking with this mom, I introduced her to the people who will guide her through this.  I can honestly say she seems considerably less stressed and ready to handle what comes her way. She allowed me to reprint portions of our correspondence.

Dear Jenovesia,

I am 7 months pregnant. The doctor found something during the last ultrasound and told me my baby has dwarfism. I’m not sure what to do. A friend searched on the internet and found your blog.  It is a lot of work to care for a child with needs …. my family suggested not keeping the baby, but I’m not sure I could give her up….is there a cure?… it just isn’t what I expected, I mean I’m afraid kids will make fun of her … Why did this have to happen to her? She did nothing wrong!  … I know what I’d tell someone else, but everything is different now that it’s happened to me … I keep asking myself, what will she look like?  Will she ever have a boyfriend? … I’m really scared and confused.   –Gina

Dear Gina, 

It took a lot of courage to write to me, I am glad that you did.  It is a shock to hear those words. They were the last words I ever expected to hear. But once your head stops reeling, you will realize there is a beautiful child waiting to be born. This is your child, the one you have been waiting for. She was meant to be exactly who she is. I promise you, you will fall in love with her just as you would have if she were any different than she is. After all, you already know her; she’s been with you for these months. img002small

We all have ideas in our head about what our baby will look like.  We all have ideas of what our child will grow up to be. The real truth is, dwarfism or not, none of those ideas are ever accurate. Yes, you are justified in your concern — any mom would be. You should also allow yourself to grieve from time to time… 

Is it easy?  Not always.  Sometimes it seems as if everything is a puzzle.  Then, I look at him and I see how he naturally adapts and works to find his own way. He teaches me and inspires me.  Caring for him has pushed me to do things I would not have thought myself capable of.  But everyday I find the work is worth it.  It has been an amazing life so far, one I would not change for anything. I am also very pleased to say that he is happy with who he is.  I’ve always told him that he has been given a gift, what he is to do with it is for him to figure out.

He allows himself to grieve too sometimes. He knows that he is not as fast as the other kids, can’t go in the bounce houses at parties, or play some sports as well. Sometimes he feels left in the dust.  img003sizedHowever, on most days, the fact that he is a dwarf alludes him. There is too much life to live, stuff to do, and fun to have. He has girls chasing him already, (which he loves).  He will, like any young man, have heartbreak and break hearts too.  It is inevitable.  He will also find love, I am certain of it. There will always be bullies and prejudice, very few of us escape that.  However,  I have found that other children have been especially kind to him because of who he is and how he feels about himself. 

There are many scared parents who come to LPA, after awhile, they have blended in so well that you’d never know they weren’t expecting this.  Please read “Welcome to Holland”, which is posted on this blog, visit lpaonline.org and see the beautiful children.  If you contact LPA, they will get you in touch with folks near you who have children with dwarfism.  You can see for yourself how wonderful they are.  Just seeing a picture helped me, I fell in love with her, I am still friends with the family to this day!

…Enjoy your child.  You are about to step into a life that is, at times, a different world.  Consider yourself privileged, not everyone sees this world, not everyone asks or is asked to visit.  You said you only have one life, so does she.  Everyday, remind yourself of what has been entrusted to your care.  Above all, raise her with high self esteem.  Let her know how precious she truly is.

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Those are some excerpts from the many emails we had. There is so much I wanted to tell her, all of the great stuff and memorable moments. I wish I could reprint it all here. What I would like to tell any parent out there who has received news that their child has a dwarfism is — don’t isolate yourself. There are experts closer than you think and a pretty large group who are just like you and your child. Don’t expect the worst or the best. Yes, your child will have medical concerns and you should equip yourself to take care of your baby. No there is no “cure”, most of us don’t see this as something that needs to be cured. Don’t for a moment think that this child is not worthy of you. You didn’t think that way moments before you got this news, nothing should change.  Your life will be very different than the one you expected—embrace that!  You too will see it in a whole new way.

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