My Sister the Fighter

I know this blog is about blindness but it's also about my life.

And right now that's all I can think about...

This week I was in Orlando, Florida for the convention of the National Federation of the Blind (NFB). I was off in my little world (which I visit once a year around this same time). I arrived on Saturday and spent the first couple of days busily running around to meetings and presentations; jumping into the mix of things and feeling right in place.

 On Wednesday morning we started our General Session, which basically means 3,000 blind people meet in one room to hear from national leaders. At about 11:30 (eastern time) I got a text message from my mom,

"Call me as soon as you can."

Instantly, my heart sunk. I showed Lucas the text and we both shared a similar glance. I knew immediately something was wrong.

So I walked out to the hall, with Lucas in step. I called my mom. She told me my little sister had gone to the ER that morning because she was bleeding badly. After a few tests were done and then an MRI, the doctors found my sister had a mass, most likely a tumor, in her uterus.

When I heard the words mass and tumor, my knees started shaking and I could feel them start to buckle underneath me. I had had this same conversation with my mom, over the phone, four years before.

My mom told me she knew I was in a meeting but that I'd want to know what was going on, and of course she was right. I sort of just hung up the phone with my mom and stood there motionless. I felt like the world was caving in on us again. People told me to "be optimistic" "you don't know yet, so don't worry too much," "it could be nothing..." all whom I know were trying to help me. But all the optimism in the world didn't change things last time and I couldn't help but feel angry when people told me this.

It hurt so much. Yet I was standing in a hall that was now filled with 3,000 people leaving their meeting for lunch, acting so normal and talkative. I didn't know what to do. So I numbly walked to my next lunch meeting, picked up my box lunch and sat down at a table with some co-workers without saying a word. I sort of felt like a robot trying to eat my lunch yet not tasting a thing.

Shortly after lunch my mom called me again (she did such a great job of keeping me updated on EVERYTHING). She told me my sister would have blood work done and later that evening would have surgery try and remove the mass. She told me that a live MRI (which I learned is an MRI in which a team of doctors actually sit in on while the pictures are taken) had shown that the tumor was growing inside her uterus and appeared to have punctured her uterus and was growing toward her kidneys. IF the MRI was accurate, this was about the worse case scenario. It meant a hysterectomy, and more than that it meant my sister would not be able to have any more kids.

Now, many, many people told me how lucky she was to have just had her baby boy, that "At least she had one." And as much as I wanted this to make me feel better all I could think of was my sister and brother-in-law and their dream to have a big family. Don't get me wrong I know my perfect little nephew is a miracle but I always imagined my sister with more kids.

My husband did say something to me that night that made me smile for the first time through this whole thing, he said,

 "Maybe God just couldn't make perfect again! I mean Gavin is pretty much perfect!"

That made me smile. In fact we laid in our hotel bed that night and stared at this picture for several minutes...

It was our go-to pic all week to make the pain seem a little less intense, it worked 100 percent of the time. And by-the-way, my husband is just as in-love with this little guy as I am, I caught him with the picture pulled up on his phone a couple of times! ;)

After the blood work was done and shipped off to some hospitals back east. My sister's amazing doctor told her she wanted to hold off on the surgery because she wanted to work out every other possible option before a hysterectomy. What a blessing that doctor was to our family.

My sister was so brave during a live biopsy (meaning no anaesthesia) and then the biopsy was sent off for analysis.  And then the waiting game was on...

This was probably the WORST part for all of us. But the best part of all was that we began to see the ENORMOUS amount of love, support and faith from our family and friends, and even strangers who don't know Ambree at all. I can't imagine the number of prayers that were sent up for our family during that time frame. There was no way God couldn't take them all into consideration.

Although people around me, including my INCREDIBLY STRONG little sister were showing such grace and faith. I wasn't always so graceful with mine. There were time during the next two days that I felt so discouraged, so angry, so doubtful and so disappointed in God's love for our family. I know, the wrong way to feel, but it was real.

I went to bed on Thursday night, after talking to my sister on the phone for a while and all night I had nightmares and slept so poorly. I finally fell asleep in the early-morning hours and I remember waking up and then waking up Lucas and telling him, "I have a feeling it's not cancer." As so as I said it out loud I started doubting myself. "Deja, you're trying to soften the blow." "Deja, you just want that to be the answer," "Deja, you know your family history, you're crazy if you think it's going to be that easy!" But all day long my friends and my sweet husband kept reminding me to trust that intuition.

Later that afternoon we found out that the tumor was benign (NOT cancerous). It was something I should have expected (after my early morning confirmation) but it sure felt good to hear it said out loud. Suddenly I felt happy and even had a little skip in my step. As I told people at the conference who has devoted much prayer to Ambree, some even cried. I felt such an amazing amount of Christ-like love from so many people. It was amazing!

Despite my excitement that the "C" word has not reared its ugly head again, I also knew my sister was hours away from surgery. They still needed to go in, assess things, and remove the tumor. My thoughts quickly turned back to prayer that somehow they could remove it without  having to do a hysterectomy, also there was fear of massive bleeding, so we weren't quite out of the woods yet.

For a minute I felt kind of like a spoiled child asking God for more blessings after we had just gotten such an awesome present already. But then I realized that there's no limit, so I asked for more.

I had a big banquet that night, so I got all glamoured up. I remember putting on my lip stick and my hands were shaking so bad I got it all over my face. I was glad I had something to keep me distracted while I waiting. After the banquet I went to my room, laid down on the bed, still in my banquet dress and cried. Lucas held me and I simply told him I wish I could just hug my sister right then, that's the only thing in the world I wanted. I just wanted to see her face and hug her and hold her hand.

I sort of dosed off in my flood of tears when my cell phone rang. I've never answered a phone so quickly in my entire life.

My mom was practically glowing through the phone when she told me how well everything went. That the tumor was completely removed, no hysterectomy, no blood transfusion, everything went perfectly.

You know what I didn't to celebrate. I slept. Like a rock, for the first time in days. After I woke up, that's when my heart really felt so blessed and peaceful.

I have no doubt that prayers led to the outcome for my sister.

Thank you to all the people in my life who stepped up, prayed, sent messages on facebook, hugged me, made me laugh, wiped my tears, texted me, held me and had faith!

Oh, and nd don't mind me, I just wanted to share a little something with my sister...

Dear Fattee,

I just want you to know how proud of you I have been through this whole experience. You are such a beautiful example to me! You have been so optimistic and hopeful; that's such a huge gift you have.

I love you so much and am so excited you get to make more "perfect" little babies so I can be their aunt. I wish I were there to give you a huge hug but I promise I will have several ready for you next time I come to see you!

I love you and am so proud of you!

Love Always,

Deja