September 27, 2009

Lucky










It was hard to believe a little over a week ago that things could get better. At the time of Rachel's diagnosis and her complicated birth, I was stretched thin. I didn't think things could be worse. I didn't know how I was going to be able to handle everything. But now, a week after her birth, I find myself realizing how lucky we really are. Sure Rachel has Down syndrome, but I don't see that now that she is here. All I see is her cute little face and fingers and toes. All I see are her eyes looking for me when she hears my voice. Down syndrome isn't her, it's just a small part, something in the background. For how little and premature she is, she is also pretty healthy. Yes, she has the abdominal issue and surgery ahead of her, but her heart is strong and her lungs are strong. Every nurse at the NICU tells me about how "active" she is...and by that they mean she screams her lungs off at night! This makes me laugh because nighttime was always her most active time in my stomach. Our little girl is a fighter!

Anytime I start to feel less than fortunate, just one visit to the NICU puts everything back into perspective. A couple of days ago one baby died. The whole family was there and they saw THEIR baby die. I had a very hard time taking their cries of sadness. I don't even want to imagine what losing a baby would be like. The little girl next to Rachel is also fighting for her life. She swallowed merconium when she was born which has also given her a heart condition. This baby's mother can't talk to her daughter, hold or touch her because when she does it sends the baby's heart into overdrive. Yesterday while I was visiting Rachel, that little girl stopped breathing 3 times. I was holding Rachel at the time and I could feel her little breaths on my chest and I cried. How lucky am I?

19 comments:

  1. She is a cutie!!

    I can't believe she is already in clothes- it took my niece weeks to be "allowed" to wear clothes or for my sister to hold her.

    When is her surgery?

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  2. She is absolutely adorable! Anne-Sophie (from WTE)

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  3. Awh Mags...how sweet...these pictures and what you had to say made me cry!! :( Always remember how lucky you are...and little Rachel will soon understand how lucky she is to have you as her Mommy (& Stephen as her Daddy of course). Call or e-mail when you get a chance!! Talk soon!
    Ky

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  4. You are indeed very lucky! I'm glad you have been able to look at the glass half full... I'm sure you will soon understand the miracle that she represents... I'm so happy for you!

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  5. I keep praying for her, I know she is a fighter, she is proving that to you guys each day! She is absolutely precious! You guys are very lucky and so is Rachel. We all will be thankful each day for her.

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  6. She is one of the most beautiful babies I've ever seen. Her teeny nose, alert eyes, peaches and cream complexion and a mouth that looks like she's already trying to smile... she's just perfect.

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  7. Maggie, I just want to tell you how much you, Stephen and Rachel inspire me. I'm so glad you have this blog so I can follow you on your journey with your amazing daughter. All of you were greatly missed this weekend, but we thought about you the entire time. I'm so glad we're family now!

    Love,
    Hannah

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  8. I love that she is looking for you when she hears your voice. You can't imagine loving someone with all your heart - unconditially - until you have a child.

    Love you,
    Mom

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  9. She is just amazing.What a beautiful little girl she is. Her face is precious.She looks so wise.

    Love,

    Llama

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  10. Maggie,
    You're words are so inspiring. Keep blogging, I just love to read them and see how you and Rachel are growing in different ways each day.

    Jess

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  11. It's so nice to read your blog. I'm glad that Rachel's lungs and heart are strong. Having a child changes so much of how you see things. The love and bond are unreal.
    -Katie

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  12. Thank you so much for sharing your story. The strength of your family is truly inspiring!

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  13. Maggie,

    Your little girl is beautiful!! You are such a wonderful mother. Keep the faith-Rachel will continue to amaze you.

    Lori H.

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  14. Hi Maggie and Stephen,
    What adorable photos of sweet Rachel Jane. So happy to hear she is settled and moving forward over there. We are thinking of you.

    Nancy Micca
    Family Support Network

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  15. Dear Maggie and Stephen,
    Although we missed seeing you this past weekend, we are so relieved that things seem to be progressing in a very positive direction for all three of you. Please give your beautiful Rachel a big kiss from us. Your positive attitudes are most admirable.
    My Mother had Myasthenia Gravis and lived a long, productive life (unlike many others with the same illness - a progressive degeneration of all the muscles in the body)...I can tell you that a positive attitude makes ALL THE DIFFERENCE. Aristotle Onassis passed away (with all his money) from Myasthenia Gravis not that long after being diagnosed. My Mother lived for 49 years after being diagnosed and lived until 89 years of age!

    Love,
    Cousins Marie, Arthur, and Michael (Hannah)

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  16. Grandmas need lots of pictures
    Love
    Gramma Fluck

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  17. You two are amazing! I just love the pics with the hat on Rachel's head! We are thinking of all of you!

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  18. She is a "wonder" and so are you and Stephen. The pictures and your story are very inspiring. You all continue to be in our prayers. We'll be in NC for Erin's Pampered Chef party. I do hope I get to see you. Abide... John's mom, Joyce

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  19. Maggie & Stephen,
    Thank you for writing and keeping us that are far away current of little Rachel's progress. We pray daily for her to get stronger and for you both to have strength. She is beautiful and so so sweet. Love you, Barry, Jan, Katlynd, April and Kelly Contrael

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