Tuesday, December 23, 2008

Grace

As rivers, the nearer they come to the ocean whither they tend, the more they increase their waters, and speed their streams; so will grace flow more fully and freely in its near approaches to the ocean of glory. -John Owen

By God's grace Magdalena is here with us today, her 146th day on the earth. Lately my eyes have welled up just looking at her sleeping knowing that it is all because of God I am able to still look at her. She is a miracle. Last Christmas we joked about how crazy the future holidays would be with my parents having five grandkids (there were only three at the time), and Lori reminded me of the tears I shed after finding out Magdalena's diagnosis and the reality that what I had previously said would not happen. God has allowed us one holiday with our sweet daughter and in the next few days we pray that he will give us another, one to celebrate Christ's birth. I don't know why God chose Magdalena, but he has given her a special task on this earth and although we have seen how much she can do, God is still using her to change our hearts. She changes me daily. Even as I watch her now to be sure that she is ok, I stare at her chubby, little arm as it rises and falls with each breath that she takes and I am overwhelmed with happiness.

When we first arrived home I didn't know how to care for her. I was way overprotective, and my rules for everyone that surrounded her seemed overbearing, but thankfully everyone was patient with me as I learned Magdalena's special needs and how to specifically care for her. Now, I am still overprotective but I like to allow everyone to enjoy her as much as I do. Noah and I are researching more about living with a T18 baby and how best to care for them. This can be a problem because each one is has different needs and there are not enough cases to explain. Just as I do T18 babies' lives are counted with days, even if they live beyond a year because each day is a huge blessing to have. Here is some information that reminded me of God's grace and how each day is a blessing.

95% of T18 babies die in utero (1 in 3,000 conceived are T18, 1 in 6,000 are livebirths)
Of liveborn infants, only 50% live 2 months
5-10% will celebrate a year of life

Every life has an effect on this earth, even those who may never be held by their mother. Once a mother always a mother. God has a special purpose for these babies.

Tomorrow morning we will have a test done so that the speech therapist will know how to best help Magdalena take her bottle better and maybe food?!

16 comments:

  1. Praying for your beautiful family to have a very, very Merry Christmas with your precious Magdalena! Can't wait to hear all about it!

    Love,
    Kathy

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  2. Praying for many more days. Wanted to suggest one of my favorite books that you can only find this time of year, and you probably already have it but it is "You are My Miracle" by Maryann Cusimano Love and Satomi Ichikawa. Love it and how true it is. Merry Christmas

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  3. What a very special Christmas this will be with your little Angel. Have a very joyous and memorable day! About the statistics...I knew some of those not so lovely stats but I hadn't read the 1 in 6000 are born alive. Makes me thankful for the breaths of life my son had. It may have been short but I have a birth certificate to prove he did live...and he beat the odds just qualifying for that bit of paper. Take care and Merry Christmas.

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  4. Praying for her test she is going to have. Please let us know the results. And yes, what a blessing Magdalena is to all who know her. She is precious and thriving in you and Noah's love.

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  5. I am so excited for you and your family. What an incredible blessing for you to have your sweet baby here with you.
    I love seeing the updates and pray for Magdalena and your family everyday. I am praying that your Christmas Eve tests go well and Magdalena handles the tests well.

    Thanks for sharing this little peek into your lives.

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  6. Each of these posts is a mini-celebration of the gift that she is. I love coming here, and reading your words to explain the love that you have for your sweet girl. It's like coming to check in on family, because you and I share the same kind of love mixed with some awe and gratitude for our girls.

    I'm so glad for this Christmas for you. A wonderful gift.

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  7. Oh how His grace is all sufficent! I pray that the God uses Magdalena to come against the statistics. I can remember almost 13 years ago when having my first child, there is a special place for all of our children but the first born holds something even more special. We know this; as long as she is here God can work on her life on earth. Precious is not a word that explains the love you and your husband have for your sweet sweet gift of life. Praying for nothing buy joy and peace during this time of year. I encourage you to not question how great Easter will be! Dream about next Christmas, He can do it as He is already showing us.


    Nothing but love and prayer,
    Melissa

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  8. I remember vividly those early posts...before and right after bringing her home. Anyone reading so clearly sees Him at the center of your family....guiding you through this maze.

    Merry Christmas...sweet Magdalena!

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  9. Anonymous6:35 AM

    Magdalena is a beautiful gift from God. I wish you many, many more days with her. Praying her tests have only good results. Merry CHRISTmas, have a wonderful holiday. You have reminded me how precious each and every day is.

    Have a Holly, Jolly
    Lisa

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  10. Merry Christmas to you and your family!!
    Magdalena is absolutaly beautiful!!

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  11. Merry Christmas Roberts family!

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  12. Merry Christmas, you are blessed.

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  13. She certeinly is a miracle and one to be celebrated. What amazing parents you are. Praying for a most blessed day.

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  14. Watching y'all and Magdalena has truly been a testimony to God's grace and miraculous love for us. Praise to Him tonight for loving us enough to joyfully spend 33 years of his life putting others first in living and dying. And praise for showing us just how selfless He is in the life of a precious little one like Magdalena...

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  15. Jennifer Hurt Williams10:18 AM

    Merry Christmas, Baby Magdalena. I hope you had a great day and that Ho-Ho was good to you. Samantha wants to send you a gift...tell your mommy or daddy to e-mail me and let me know of a toy that you would like. We love you and think and pray for you each day that passes.

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  16. I just ran across your blog from Trish & Dustin's blog ... I also had a daughter with T18. When I read this post I wondered if you knew about http://www.trisomy18.org ... It's a wonderful site not only for moms who have lost, but also those who have been blessed to keep their angels with them. I thought I would pass it along to you just in case you hadn't been directed to it yet. And your daughter is so gorgeous ... Looking at your pictures just makes me smile! She's so precious!

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