Thursday, July 19, 2012

The Guilt...

When we were told that Taylor had major medical problems I immediately felt guilt. I imagined this to be a natural reaction. I mean, here I was following doctor’s orders taking my prenatal pills, staying away from food that I was told to avoid and yet Taylor was ill. Did I do something to cause my daughter’s suffering?? Did I not exercise enough?? Was it perhaps all those bean burritos I ate??  (I really did question that by the way – had MAJOR cravings…lol). What could I have done to cause Taylor to suffer so much?

Then, I thought okay, I know what it is, God was punishing me. Yep, God was punishing me for some not so prudent choices I had made as an adolescent. He was teaching me a lesson. Moreover, I thought He was telling me to stop and value the small things. Was He really teaching a lesson? Of course! Doesn't He always?

So consumed was I with this notion of punishment, that one day while on the phone with my sister Stefanie I was hysterically crying and asked her, "Do you think I am being punished through Taylor for the choices I made in the past?" Stefanie was quick to remind me of a good, humble, God worthy family whose daughter had Cerebral Palsy. She commented, “Jenna, you know Stacy lives a God worthy life, but yet God blessed her with a daughter with special needs just like you. See, He gives special children to special people." Stefanie was so right; I had definitely been humbled without a doubt.

So here comes the day we discovered that Taylor had 2Q37 Deletion Syndrome and obviously the burning question is still eating away at me.  Was it ME that caused this upon my daughter? You can’t imagine the relief I felt when I was told that less than five percent of cases are passed down genetically and according to Taylor's Geneticist 2Q37 Deletion Syndrome had most likely just happened for NO other particular reason than crazy chance. This was MOST comforting to say the least!  That’s when my notion was confirmed, 2Q37 Deletion Syndrome was in fact God's plan for Taylor.

Recently Max and I were given the opportunity to have blood work done that would enable doctors to determine if there is a possiblity that the impacting chromosome may be missing from either one of us.  Now, at this point do we really want to know? What if one of us is missing that tiny line on chromosome two... what if it’s Max? What if it is I??  The way we see it, we’re past the point when it’d make a difference, so we have declined the test at this time.  However, in the event that we do want to have another child we would most definitely have the test done.  Neither Max nor I want another child to have to suffer as Taylor has. 


My Dad told me a while back, "You remember to take good care of my grandbaby because she is an ‘elite’ spirit of God and chosen from the pre-existence by God." I do believe that Taylor is ‘elite’. Taylor is a special spirit of God, and Taylor is without a doubt the most comforting and perfect spirit I know. She may not have all the physical attributes most normal babies have, but she has the highest power by being a chosen spirit of God. He trusted us to love, adore, teach, help, and care for a child of God, to care for Taylor.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

16 comments:

  1. I'm glad Jenna that you finally realized that it's not Max's or your wrong doing. Simply, You were blessed. And better Yet Taylor was blessed With such a wonderful,patient and loving mother and father.

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  2. God doesn"t create Junk...her illness means nothing in the scheme of things. She choose you because "you" needed her. She will make you a better person. The Love she radiates will effect everyone she touches. She just wants you to Love and care for her, and let her be Her. She won"t let you down.

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    1. Yes, I think she's here more for me, then I for her! :)

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  3. It is commendable that you have taken the initiative to keep a journal, Jenna. This will be invaluable for Taylor when she's older. I'm proud of of you!

    PS: Thank you for the mention on my post :-)
    PS2: Thumbs up LIKE :-) for Gramma & Rosa!

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    1. I really do appreciate your help and the idea! It feels good to share my feelings!

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  4. Awww I love it Jenna!! Good job!! Ur doing great and I was always wondering what this experience has been like for you and now we all know!!! I love love love it!!! lol PS3 I love my little TBug...

    Aunty Stef

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  5. Your a strong person with a big beautiful heart That is y she wanted u to be her mommy...she teaches me and i bet anyone she will now that there more important things in life and one is love and the other is family

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  6. GOD knew that Taylor would be in the best of care by choosing YOU and Max to be her earthly parents. God is her Heavenly parent and he needs you both to fulfill his care giving for Taylor. She is absolutely perfect, ok... there is a gene missing, that just makes her special. You are doing an amazing job in taking care of Miss Taylor and all of her needs. She is a happy, pleasant, cheerful baby that laughs and smiles all the time, so you are doing something right. You have the LOVE and SUPPORT of your FAMILY and FRIENDS and that alone is a BLESSING.

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    1. Thank you Pat! I don't know where I would be without all the support we get! :)

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  7. I recently started following you on Instagram. I typed in "syndromes" and the photo of your beautiful daughter popped up. My 2 yr old daugter has Triple-X Syndrome... so im constantly searching new things n e where I can. Your blog is inspirational and I can totally relate to you. Alexia is my one and only child... and I too had the worst guilt. Im a young mommy... u look pretty young as well. keep up the good work. Kisses to you and your precious munchkin

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  8. Awwww Thank you so much! I want people to relate and know they are not alone! Thank you so much for your comment!

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  9. Jenna, you are such an inspiration to everyone around you. Taylor was sent to you for a reason and it appears you are making the most of a difficult situation. The post from the mommy on August 2nd is a testimony to the wonderful ways you and Taylor can inspire other people. I can't think of a better person to have as Taylor's mom than you. Keep up the good work. :)

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    1. Thank you!! I want to help her and others like everyone has helped me!

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