Sunday, January 6, 2013

One Step Forward Two Steps Back

Taylor has overcome so many obstacles since being diagnosed with 2Q37 Deletion Syndrome and I’m truly proud of her. I remember a time when I didn’t even know if she would ever hold her head up and now she goes around pushing her walker; now she won't walk in it but she’ll push it all around the house, lol.

Yet with all the excitement and admiration I have for Taylor when a hurdle arises I’m down again feeling jipped. Yes, I said it! Sometimes, I feel jipped! (I know you are probably thinking I am a brat and childish) But, why does Taylor have to constantly be facing challenges? Why does she need to keep fighting? So no matter how excited I get over an accomplishment I also cry.

Taylor’s complication this time around is not being able to gain weight due to her illnesses and chronic vomitting. This means that she’ll have to have a feeding tube connected to her 24/7. And when the doctor delivered the news, she said it as though it was no big deal, but my heart was crushed for Taylor, so I bawled right there at the doctor’s office. Taylor can't even hold herself up as it is and now they want a feeding tube added, which is an additional five pounds at least! How will she crawl or even learn to walk or manage to not pull her G-tube out? I mean, we put her through horrible surgeries to help her to be more like a ‘normal’ baby and move like one, but now I feel like we’re at square one dealing with feeding issues again.

We all have off days, right? So, today I feel jipped because I'm numb, and hurting, and upset. But deep down inside, I know I'm blessed to have a sweet little girl in my life who looks to me and wants me because I'm her mommy. Now, I may not be able to take her pain away, but I will make sure she lives an amazing life regardless. And must remember that we have still made so much progress this past year!

I love you Baby Taylor and no matter what I will always be there to hold your hand!

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





1 comment:

  1. My son has faced these same issues. It has been a constant uphill battle for us as well. We have finally got the exact name for it today, 2Q37 deletion. .....your writing, what you're feeling, made me cry because I too feel tge same way that you feel!

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