A List Maker's Life: Raw*

Friday, June 4, 2010

Raw*

*Alternately titled:
The post where the people who know me as "the girl who keeps her emotions under wraps as tight as a pig in a blanket" will think I may have lost it.  Yet, in an attempt to be more real and honest with myself I think this is worthy of sharing. 
or
The post written last night after our appointment, yet when re-reading it today I helped me realize there will be good minutes, hours, days, etc. and others that are not so great.  
or
The post I waited to publish until today knowing that my perspective might be one of a bit more hope if I gave it a few hours.

Tonight as I stood in the shower I wasn't sure where the streams of tears ended and where the water began. I'm washing them all down.

I understand that our news may have been more promising than the other patients the doctor saw this morning.  But, hearing that my child has the most severe type of Spina Bifida, may suffer brain damage because of the fluid in his head, will likely never walk (but for a miracle, which I will continue to believe in), will spend months in the hospital in a city other than our own, will have his first surgery hours after birth while I am still recovering from a surgery of my own was not the "good news" I was hoping for. Yes, it is better than the worse we have feared for the past week.  Yet, this news is still laden with uncertainly, life altering implication, and some frustration.

I will continue to strive to be positive.  There are minutes and hours that my hopefulness comes much more naturally.  I do believe in miracles.  I want God's light to shine through our circumstances, but I must admit that I'm still sad.  Sad for the things I might have dreamed or thought would be for us, for our family, for our dear baby.
Tonight I am trusting that God understands my hurt; that He feels it just like I do.  Trusting He is standing with me; that He is pointing me to a perfect plan, albeit very different than mine. Trusting that He will give me just what I need for each moment ahead.

Be strong and take heart all who hope in the Lord. Psalm 31:24

For those of you who like technical details and specific prayer requests:
~The new ultrasound indicates that Gabe has Myelomeningocele.
~Hydrocephalus (a build up of fluid in and around his brain) has also been detected.
~The doctor is encouraging us to rule out the possibility of Trisomy 18 with an amnio.
~We will not be considering in utero surgery.
~We are specifically praying that the fluid in his brain will remain stable and/or decrease, that he will grow strong until it is safe for his delivery and surgery, and that his paralysis will be limited or non-existent.

Thank you all for your thoughts, encouragement, and concern.
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35 comments:

  1. My hubby's name is Gabe, too! I'll be praying for your sweet one(and for YOU!).

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  2. I will keep you all in my thoughts. You are so incredibly strong and your words were raw and beautiful. I wish you so much strength and love!

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  3. Oh Katie, these moments will come and they will go.
    Hearing scary news about your unborn child is going to make for many tears. But there is hope, and so the tears will not fall every moment.
    I need you to know I'm praying they are wrong. I'm praying for complete healing. But I am also praying for peace, and wisdom and brilliant earthly physicians to surround you every moment.
    God's will is perfect, so is Gabe. So much love and so many hugs and please let me know if any trips over my way are coming, ok?
    Yours in Christ,
    SJ

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  4. I am so sorry. I am praying for you every day. I am also praying for your beautiful babe every day. Just know that is the Bible it tells us the we are ALL fearfully and wonderfully made. God has a plan for this precious child and even though it doesn't seem fair He knows what is going on and for what purpose. We are here for you and just know that we are holding your hand through this rough time in your lives even from miles away.

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  5. continuing to pray for you, your family, and Gabe!
    love ya!

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  6. Oh Katie...there's no need for apologies. Wish I could give you a big hug or at least come and bring you a meal (or cupcakes) to cheer you up. I was praying for you yesterday and will not stop, dear friend. Praying for His peace and strength to cover you today...love you!

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  7. ...and I too am praying for a miracle, for we serve a God who is way bigger than all circumstances. He knows...and with Him nothing is impossible.

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  8. I continue to pray for all of you. This has taken you all on a differnt journey than you expected, but God will lead the way. Although it will have its twists and turns, bumps and bruises you will perservere with God by your side all the way.

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  9. Thanks for the specific prayer requests. Will be lifting them up along with you!

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  10. Thanks for the update. I'm keeping you and your family in my prayers.

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  11. Thank you for "letting us in" and sharing very real feelings/emotions! Love you and we will continue to prayer (even more specifically)

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  12. We are keeping all of you in our prayers.

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  13. Katie, my heart breaks for you, for your sadness. Praying for healing for Gabe and peace for you. All my love to you!!!

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  14. Oh, goodness. I came here from a comment you left at Hyacynth's page, and I wasn't ready for such a heartbreaking post...

    But I guess you probably weren't ready for a heartbreaking diagnosis, either. I'm praying for you and your sweet boy, and for miracles.

    You have every right to break down -- in target or anywhere else. Positivity is helpful, but tears can be, too.

    (((Hugs)))

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  15. Wow my friend. Thanks for the peek into your heart. I'll be praying for your comfort, and that He will be wrapping up sweet Gabe in care as he continues to grow. With Him nothing is impossible. Love you all.

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  16. I don't have the right words to say, but I am praying for you and checked your blog all day yesterday waiting to hear how the appointment went. Thank you for sharing, we will continue to pray for you and your family.

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  17. All I could think of was the verse...."Jesus wept". He wept...he knows our pain and weeps with us. I know you already know that...but Katie I just had this picture in my mind of him holding you....crying with you.
    It's so hard to see the whole world go on as yours has stopped.
    I am praying that as you go through this grieving wretched sadness you will feel the arms of Jesus around you.

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  18. Sending lots of Hugs this very minute! Please remember that we are all here for you and your family! I am continually praying and thinking about you and Gabe. thank you for opening your heart with us! You are so strong and I admire your strength. Gabe is blessed to have you as his mommy :) We'll be moving back to the GR Area Aug. 1st so if there is ANYTHING that I can do..please don't hesitate to call! I'd love to get together for coffee, and we could let the kiddos play :) Please e-mail me your address..I'm going to mail out invitations for our housewarming party (Aug 21st), and I would LOVE you to join us :)Hugs Katie..Sara Nowicki (sanowicki@gmail.com)

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  19. thank you for keeping us posted... I have seen kids with severe spina bifida thrive... and I am so glad it is not one of the big bad diagnoses. Praying along with you for a mirace!

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  20. It is good to know a bit more about what is going on. I know you are brave and stronger than you think, and will be able to make it through anything.

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  21. I'm so sorry that you had to hear all of these things about your precious baby. I'm sure that was so very difficult.

    I will keep praying for all of you and hoping for a miracle.

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  22. Praying. Our God is good and mighty. Praying for miracles and peace and understanding.

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  23. The story aint over yet girl. Love you;) Kevo

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  24. Sending up prayers for you and your sweet family tonight!

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  25. Sending prayers for you and your family. May God's Love comfort you and guide you in the time. May Gabe grow stronger everyday.

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  26. Oh Katie, I'm so terribly sorry and can only imagine how hard this is for you right now! You and your little one are most definitely in my thoughts and will be in my prayers! As you said, God is a God of miracles and I will trust and pray that He will work one for you and your precious little one!!!!

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  27. Google somehow led me to your blog tonight, and boy am I glad that it did. :) I am so sorry to hear the news of your sweet Gabe, but am so glad that I can shed some positive light in what seems to be such a terrible time. My son, Greyson, was also born with myelomeningocele SB. His lesion was at L2. I just want you to know that you WILL get through this! Pregnancy is by far the hardest part of this journey. There are so many unknowns, so many "wait and see", and so many negative comments form doctors that you want to badly to give you good news. At 16 months, my son is SO smart and SO happy! I can't even imagine my life without him! We also heard that he may have brain damage and would most likely never walk. He really is so so smart! He had a shunt placed at 3 weeks and has been cruising along ever since. :) he is crawling and rolling all over the place and is working on standing! Hang in there mama, if you have any questions or just need someone who has been there, my email is leighegibbs@sbcglobal.net. I've been where you are and have come out on the other side...you will too! :) Love and prayers to you and your family...

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  28. I will be praying for your family. I don't know the difficulties and joys that are ahead in your path, but I know what a mighty God we serve, and he makes no mistakes. He will be your source of strength, and I know he can use this in a big way. I will be praying for peace that passes understanding that only comes from Him.

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  29. Katie and Kevin,
    Rom 8:26 says...Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered.

    Look about you guys, you see tons and tons of prayer support. Look at the number of friends and family who voice their support. What a powerful testament to your love for our Lord! Your ability to be transparent will be incredibly valuable to you and to all those who are aware of my great nephews condition. Giving God the glory, placing Gabe in Jesus' care will bring uncalculatable (my new word) joy in ways we do not even know about at this time.
    Even when we have zero words to pray, if we're at out wits end, the words just will not come...the Holy Spirit will take over and intercede for us. He knows the perfect words! We can't even utter the proper noises at times, and yet the Holy Spirit takes over for us. Wow, what a joy that is.
    Lean on it guys. You have all of our total support and prayers upon prayers!
    Love you!!!!!

    Rj and Arelys and family

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  30. I love the name you've chosen.

    We will continue to pray for you and your little GEM. :-)

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  31. Katie and Kevin, We are praying for you and your family, and specifically for Gabe. Your trust in God and His Plan come through clearly in your post. While we share your sadness, we trust God and will pray that He will heal Gabe's little body, even while he still grows in utero. Love, RIka and Bruce

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  32. Katie. Continuing to keep you, your family, and Gabe in our prayers.

    hugs from MD.

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  33. Since I last commented, I wanted to let you know that I've spoken to three other parents who have had children who have been given very, very grave outcomes. All three have undergone miracles and all are fine. They've all had surgery, like Amelia, but they're all fine.

    I know that right now you need some success stories to think about because right now, you have so, so much to think about. I'm here when you need me and I have people for you to talk to who have been where you are.

    Lots of love and prayers. xoxo

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  34. thanks so much for sharing and opening up. I do pray for you all. I sent my little baby to heaven the day she was born, it was so very hard but today I am happy. you too will be happy with all the challenges God gives you. your little one has an amazing mom and you have an amazing little one!

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  35. Thank you for sharing your story, Katie. So, so many prayers for you. Hope and peace... times one million.

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