2Q37 Deletion Syndrome Hike for Cancer

The American Cancer Society: 2013 Climb to Conquer Cancer of Phoenix AZ

As you know, my daughter, Taylor, has been diagnosed with 2Q37 Deletion Syndrome. As part of that Taylor must be checked every four months for Wilm's Tumor, which is a cancer in the kidneys. As she gets an ultra sound done on her kidneys I pray that the results come back negative and so far we have been very blessed.

Just like I hope there is a cure for missing chromosomes someday, I too hope there is a cure for cancer and I know the more participants the more chances there are! Please join Taylor and I on this hike or at least donate to the cause. The hike is a lot of fun and is on a paved road, so no need to be a "hiker." I hope you can make it!

Because nearly everyone has been touched by cancer in some way, we've decided to show our support and make a difference by forming a team to support the American Cancer Society’s lifesaving work in research, education, advocacy, and patient services Using the links on this page, you can join our fight against cancer by clicking to Join our Team or Donate. Today, there is more hope than ever for people facing cancer. We hope you will join our team or make a donation today!

I'm Back!!

Hello everyone!

It’s been a while since I last published a post and since then a lot has happened.  Taylor has had surgery for a G Tube in her stomach as well as having a belly button surgery to make her belly button actually look like a belly button, lol. She has also celebrated her very first birthday, and just got over pneumonia for the sixth time! Let’s not forget of course that I am still disputing (fourth attempt!) to have Taylor’s DocBand covered by her medical insurance.

And after all the fun I’ve been having it dawned on me that that I should stop by Taylor’s blog and actually write some thoughts to at least tell you guys what I’ve been up to.  So here it goes: I’ve been in a funk. Big surprise, ah :)

Well to be honest, it’s more like I’ve been a hermit; seriously. It’s weird how something such as a surgery can be so traumatizing and affects day to day life without you realizing it. I’ve been in my own little world.  As the mother of a child with a rare syndrome I have a lot to deal with and to be honest there are times I wish I was still, you know, that innocent little girl who would ride her little purple bike around the neighborhood, without a care in the world.  I’m sure a lot of us feel that way sometimes, especially when life ‘tests’ us.  Don’t get me wrong, I thank God everyday for my sweet little girl Taylor, she’s a blessing and I wouldn’t be the person I am today if it weren’t for her, yet I have all these conflicting emotions.  They range from sadness, to excitement, to turmoil to disbelief, and heartache. And even as I tell myself all the time to enjoy the small things, the journey…I’m sometimes so overwhelmed with "crap" that it’s nearly impossible to see the light at the end of the tunnel.

I’ll share with you an odd thing that occurred lately. It was that right after Taylor contracted pneumonia (again) and one of her surgeries was postponed that I had a surge of energy.  I had been so wound up about her surgery and nervous and distraught that when it was postponed it was just like I took a breather.  And soon I noticed that I began to answer my phone, I began to take pictures again and began posting them on Facebook. It was almost as if I had thrown myself on the couch after a long day at work and just took a time out.I should really learn a lot from Taylor though. She is always happy even when she’s hacking her lungs out or vomiting. She is a miracle baby and I truly treasure her. She continues to amaze me every day and I look up to her. She’s my hero!

"Children remind us to treasure the smallest of gifts, even in the most difficult times." - Allen Klein

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

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.