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Wednesday, November 25, 2009


My mother-in-law, Mary, (who is in her 80's) tells me about her friends and a cousin that have experienced a miscarriage or still birth. When we were pregnant with Rebekah, she was very concerned for us because she didn't want us to have the same experience. You see, back then it was extremely common to whisk the baby away before the mother could even lay eyes on the baby. Several of her friends has wishfully stated things like "If only I had gotten to hold my baby.", "If only I at least had a picture." Her cousin, over 50 years ago, had such an experience and, to this day, still cries when she thinks of her baby! She still says, "I never even got to hold him."

Yesterday, another beautiful t-18 angel left this earth. Hope was her name, and she was loved by many. There is a part to Hope's tale that makes me very, very angry. The hospital did not allow her parents to take pictures of her after her birth! Is that not insane? Now, I realize that I am in the USA and Hope was born in South Africa, but the psychology of grievance does not change no matter what country we are in, what socio-economic class we may belong to, what age we are, what race we are... And in order to mentally process 'death', we need closure. Sure, Florisha (the mom) got to see her and hold her, but to not be able to have any keepsakes to take is just plain WRONG! So this left me with a very bitter taste in my mouth going to bed last night.

I did find out today that they are going to let her see and take pictures of Hope tomorrow. But it is still insane that this was not the case yesterday.

It's little things like this that make me really worry about the human race. Are we so far gone, so cold-hearted, that we cannot recognize the beauty and wonder in each of God's creations? We are all fearfully and wonderfully made - whether 'perfect' or 'imperfect', and each has a place and purpose on this earth. No MAN should make a determination of the value of any given life. It is not our place to do this.

Thursday, November 19, 2009

Grins & Giggles

Three weeks ago, our SC Community Long Term Waiver was finally approved for 30 hours of nursing care per week! Life is finally getting back to a more 'normal' basis AND I now have another person here devoted to nothing but Rebekah's care and well-being! Her nurse, Becky, has been a godsend, and she is doing a fantastic job of working with Rebekah on all of her therapies. Rebekah is getting so much more one-on-one help and has progressed so much in just the last three weeks!

Just one of the areas Rebekah has really blossomed in is her response to things. Before, we had to work super hard to get even a little smile out of her. She is now grinning and giggling at people, things, her brothers getting yelled at (no kidding - she smiles everytime they get in trouble!), she will follow us with her gaze, smile at someone who unexpectedly walks by, and let us know when something tickles her fancy. She is such a happy little baby now, it can't help but make your heart sing praises when you see her!

Here is a video of her. Remember, because of her trach, you cannot hear her. But if you could, I KNOW you would hear laughter!

We are so blessed to be able to experience this! Everyone in our house is now full of grins & giggles too. :-)

Please take a moment on youtube to rate the video and leave a comment so that others traveling this road will find Rebekah's video on a search and will have some positive things to find when looking for trisomy 18 or t-18 resources. (You can get to the youtube video by selecting the blog title - Grins & Giggles.)

Thursday, November 5, 2009

A Different Dream for My Child

It's been an incredibly draining 6 month roller coaster ride. We have been in the hospital 3 times now, and may be looking at a fourth time as sweet Rebekah seems to be getting sick again. I am not sure I am ready for this again.

I was in a Christian bookstore today with my friend Mindy looking for a Bible study to do. I came across a book called A Different Dream for My Child (Meditations for parents of critically or chronically ill children). I haven't even read the first chapter but browsed to the chapter prayer which caught my attention in the bookstore:
"Dear God, my heart is breaking for my child today. My spirit is crished by fear of what lies ahead. I can't find words to pray, Father, so please pray for me. Be near to my child and be near to me today as your word promises."
The Lord is near to the brokenhearted
And saves those who are crushed in spirit.
Psalm 34:18 (NASB)
This is a book I think all of my T-18 Mommy friends need to get too. Also, please visit the author's website for more information, books, and resources! Jolene Philo is a wonderful Christian author!

Wednesday, November 4, 2009

Why me, Lord?

We got back from a fun weekend of family, candy, fun, and - yes - a little rain for the trick-or-treating activities. Our little Josiah took the stamina prize by outlasting most of his big brothers around the neighborhood. I couldn't believe how far he walked! And he managed to get more candy than his brothers with fewer stops (we were at a slightly slower pace so he did miss a few houses along the way) because of his absolute cuteness. :-)

Our kids: Josiah - the duck (he got a little upset when people called him a chicken, lol!), Isaiah - the Indian (this was a school Thanksgiving concert costume, not even a Halloween costume! But he just didn't want to put anything else on...), Jeremiah - Stitch, Elijah - The Headless Horsemen. My nephews are Ben (football ball, can't remember team) and Nick (the 'Unknown Ghoul' with the red eyes).

Josiah and Rebekah

Rebekah, the pink leopard...

On Sunday, we went to my brother's church in GA so that their small group and a few friends that knew about Rebekah could finally see who they have been praying for for all these months. One lady was actually brought to tears upon the sight of Rebekah and was happy to meet our little miracle.
When we arrived back in SC, Michael and I were talking. He looked at me and said, "Did you ever ask yourself, 'Why me?'" I gave him a quizzical look thinking to myself - oh yeah, every day! But I was thinking about the stress and chaos we have now.
Michael continued, "Did you ever ask yourself 'Why me, Lord? Why have you blessed us with this incredible little girl who can bring a grown women to tears (of joy)?'" Wow! I just love my husband! His optimistic perspective on life has done a lot to change me from a glass-half-empty kind of person to a glass-half-full one.
I agreed with him and thought about this for several days now. Despite the ups and downs and inevitible future that lies before us with a child considered "incompatible with life", we truly are blessed. I do not, and cannot, comprehend why we have been chosen to be her earthly caregivers. And it doesn't really matter either. For she has made me a better person, and I love her beyond words. She has inspired MANY to prayer and care, and has been a blessing to far more people than just us.
So I do ask, "Why me, Lord? I feel so insignificant, so powerless. Why have you blessed ME with this incredible gift? Please, help me to use Rebekah's life to bless others as well. Please use her to bring people closer to you. "
He answers that prayer every day.