Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.
Face of hope
Courtesy: TIffany Kay Photography
Saturday, March 2, 2013
This Is Why
Sometimes when we are out, and I have the 5 girls with me, I get a lot of comments. Well, I take that back. Almost every time we are out, I get comments. Sometimes they are good, and sometimes they are rude. The good ones I appreciate. Any mom would. When someone compliments your family, you take pride in that.. and honestly it gives you that little pat on the back that society fails to give most hard working parents. It is refreshing to hear the pleasant things people have to say about children. The rude ones - I mostly try to ignore. I chalk it up to people having a bad day, being ignorant, or being just plain purposefully mean. The first two situations I can understand.. we all say things we don't mean at times so I let it slide. The last situation...it depends on the day I am having whether I grace them with an ..... ahem.... "appropriate" response from my Irish/Russian temper, or whether I let it go. Nonetheless, neither of those categories are what has bothered me most. What bothers me the most is the "Oh I'm so sorry".... the "I feel sorry you have all those kids!" ...or the all to 'lovely' comment of "Oh that is so sad..." when they ask about Meagan and hear her story.
I really don't get what is so sad about it to be honest. I get things might be "different" with Meagan, but really, what does it matter? Isn't that true with all our children? Is it sad for Meagan? Or sad for her sisters? I'm really not clear what is so sad about any child. The day they are born we do not know what they will do, what they will be, or even how long they will be here. God is always in control, even with our typical children. It was at this moment I came across this video:
I watched it in awe. This young man who had fought so hard his whole life had fulfilled a dream most would have thought impossible. How awesome was this story!
It made me realize "this is why...".... This is why (when the Perinatologist told me "it" ...referring to Meagan's life I'm assuming... would be "too hard" on my 4 older children...) I had the reaction that I did. This is why I looked at him in disgust. This is why I asked him how could I possibly explain to my older girls I chose to love them, but not their sister. Because we don't know. We don't know what she will do, or what any of our children will do. And even when she dreams big, what may seem impossible to the rest of us, (as I'm sure this young man's dream of owning a restaurant did), could not only be possible, but actually become a reality.
So if you happen to pass by us as we walk in our ignorant bliss through the stores, don't feel sorry we have "all these children"..... When you ask about Meagan and hear her story, don't feel "poor" Meagan is a burden. And please don't comment as such. The lesson is... you just never know. Seeing the "Tim's Place" video this week brought me to tears and smiles all at the same time. It taught me that as much as I wish for Meagan, it's important for me to first and foremost let her have her own dreams as she grows ...and do everything I can to help her reach those.
I know Meagan will never look on others with sadness, but only with the joy and innocence of life. I hope that she is able to do everything she sets her mind to. And who knows......maybe one day some of those people will walk in to "Meagan's Place." Maybe then, they will realize...this is why.....
My (older) middle brother was born with a congenital heart defect and the doctors wouldn't bring him to my mother for a long time in the hospital. After much persistence they allowed her to come see him. They never expected him to leave the hospital. He lived to be 34 years old.
I always heard people say, "Oh, we don't care as long as he or she is healthy." I remember my mother getting really mad one time when someone responded this way to her question of, "What are you having?" I later asked her why she was so upset, not knowing why as an innocent teenager. Don't all parents just want for a healthy baby?
She said that Richie wasn't a healthy baby. He wasn't a healthy boy, and he wasn't going to be a healthy adult, either. But that never, ever, not for one second, changed the love that she, I, or anyone else who knew him felt for him.
My (older) middle brother was born with a congenital heart defect and the doctors wouldn't bring him to my mother for a long time in the hospital. After much persistence they allowed her to come see him. They never expected him to leave the hospital. He lived to be 34 years old.
ReplyDeleteI always heard people say, "Oh, we don't care as long as he or she is healthy." I remember my mother getting really mad one time when someone responded this way to her question of, "What are you having?" I later asked her why she was so upset, not knowing why as an innocent teenager. Don't all parents just want for a healthy baby?
She said that Richie wasn't a healthy baby. He wasn't a healthy boy, and he wasn't going to be a healthy adult, either. But that never, ever, not for one second, changed the love that she, I, or anyone else who knew him felt for him.
It was then that I understood.