Posted by a new friend Amber. Thank you for all your encouragement thus far as we've begun this crazy road we now know as Malachi.
If you only knew...
Lady in the waiting room,
If only you knew, what a miracle she is.
You would not be asking me why she can't tell you how old she is.
If only you knew, I have 5 children.
You would not be sharing with me...how easily you potty trained your two year old, giving me advice.
If only you knew, she is defying the odds.
You would not be wondering why you can't understand what she is saying.
If only you knew, how many times she has been poked and cut on.
You would not be explaining to me how to wean her from her paci, she's way too old to have one.
Most days...I would explain it all to you.
I would say, she is missing an important part of a chromosome. I would share that she has heart disease and has endured more pain and fear in her short three and a half years...than we will probably ever experience. I would defend her speech, the paci, and her awkward gait.
Today is not most days.
I just don't feel like sharing that much of her with you today.
Sorry.
So instead...you can walk away...thinking that I am a mom with few tools.
It's ok...today.
What's sad is...I was once you. I sat with my healthy, age appropriate child and gasped at the child who was way too big to have a pacifier and still wearing a diaper. I too would have thought..."well of course I can't understand her, take the paci!" I was oblivious to processing disorders. I had no knowledge of heart disease in children, congenital anomalies, diaphragmatic hernias, the importance of perfectly formed chromosomes and I thought all developmental delays were environmental.
Ignorance is NOT bliss. We could have educated you. I'm sorry...
Hi Marissa,
ReplyDeleteThank you for sharing that, it brought me to tears. God bless you and your beautiful family. I hope Malachi comes home soon.
Here is a funny thing to say, I thought of while reading the post "oh, she is missing part of a chromosome - do you know where I can get one on sale?" OK, now that I have written it, it is not so funny, and kind of obnoxious. Anyway, thanks for your post and more blessings to you!! Ann
Sweet friend...my prayer is always that God would be able to use ANYTHING out of my life. *so no problem "lifting" this ;0)*
ReplyDeleteI pray that you learn to navigate life with Malachi outside the hospital walls...very soon! I'm sure you will have/have had many circumstances where you wish you could share his story but just don't have the energy. I'm praying that you are finding a support system...from moms who "get it"...either in the flesh or online! ;0)
On the previous post...I've found that in my weakest most vulnerable "seasons" with my children...my heart is so much more exposed and tender. I hope that you are generous with yourself in times like these. Even when you know truths in your head...your heart may respond in a way that surprises you...it's part of it. :0/
I'm coming in just a couple of weeks...perhaps I'll get to squeeze your neck! :0)
I LUV Amber, she is such an inspiration for me. Good momma and so are you!
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