Happy Happy Day!

There was a time when I dreaded birthdays, aging, the whole nine yards. Now, it hurts my heart when people moan about another birthday passing. Really? Aging is a privilege! My three year old fought to earn her birthday this year, and I should be so lucky to have every fine line on my face...eek! Today is my birthday, and what a wonderful day it turned out to be. It feels like there was a divine intervention today, and I got a free pass. Taylor slept through the night without getting sick after ten hours of chemo! She woke up happy, and...knock on wood, has not been sick once today. Miss Thing even had a time out today, which means she was really feeling good. Our local radio station is doing a fundraiser for the Make A Wish Foundation, and asked me to speak on the radio to help raise money for our sweet girl's Disney trip. The wish was fulfilled in less than five minutes. Really?!  I'm still in shock. How many hearts has my little one touched? How many lives has this little warrior changed? My baby gets her wish, and of course there is nothing I want more than her happiness, and for her to be so blessed to have a 32nd birthday someday too.



Thankful

We have come so far. I look at my bald little beauty, and watch her lashless little eyes still sparkle despite all she has gone through. She is now a little girl, wise beyond her years, and has changed the hearts of so many. I walked past the bell today....the one I won't dare touch for 10 more treatments. I think about it ringing, and it makes me cry. We have so much to be thankful for. My gosh, thank goodness I found that bump. Thank goodness we have access to one of the best children's hospitals in the country. Thank goodness chemo and radiation are working. Thank goodness we have the most amazing friends and family who have cheered us on the whole way through this. We have ten treatments left after today! I can show Taylor on two hands. I can't tell you how amazing that feels. A nurse said, "I can't believe you are almost done, this has gone so quick!" But not for us, not for Taylor. While life goes on for most, we are still here, fighting for our girl, and so incredibly thankful all this is saving her life.

 

 



Denial..

Last night I asked Taylor if she wanted to go to the mall in the morning. She looked at me shocked, and said, "YES, lets BUY stuff." Chris seemed a little puzzled, and reminded me not to go crazy. Max woke us all at 6am this morning, bless his little heart for sleeping in. Yes, that is sleeping in for Mr. Max. I packed the diaper bag, lugged the double stroller in the car, and got the kids dressed. Taylor pranced around the house, Max followed clapping and cheering for whatever was making his big sissy so excited. I backed out of the driveway and into the snow/slush mix that was dumping from the sky. I could hear that inner voice saying, "You know you are in isolation, no mall today mama, go get some tea." So we drove to Starbucks, Max yelled "HOT MAMA!" to the barista, and Taylor stared quietly out the window. "Mommy, Mommy, let's go home, my legs are too sleepy for the mall today." My heart hurt, and I said, "I know lovie, mine are too." Isolation can be really lonely. Sometimes it feels like life is moving along, and we are just stuck. I love Chris for humoring me, he knew we weren't going to the mall. I love Taylor for being wise beyond her three precious years, and I love Max for being such a good sport. 12 more treatments. 12 more treatments. 12 more treatments...

Forever Changed.

I'm sure we all know the feeling of being smacked in the face....by accident....during a sport....what have you. That feeling where a rush of tears floods to your eyes, and like it or not, you are crying. Yesterday felt like that for me. Over and over, I felt the smack and the rush of tears. It wasn't from any sort of injury, just plain hurt. At one point Chris said, "You are losing it. You are rocking back and forth, and losing it." I was. And I will tell you why. Just a thin piece of curtain separated us from a six year old little girl that was just orphaned by her family. Left to battle cancer alone. I wanted to open the curtain and say, "You are coming with me. I am your mommy, and I will love you from now until the day I die. I will never leave you." But I didn't, I couldn't. I listened to a foster care worker get to know her, and prayed for her little broken heart. Some parents release their rights so their children can receive care from the state, some parents just don't want to deal with it, but either way, children get the short end of the stick. I gave her suckers and stickers, and haven't stopped thinking about her since we left.

Later in the day, Taylor finally found some relief from her anti nausea meds and drifted off to sleep. I always feel a sense of relief when she is able to escape the day through sleep. Chris was reading, and I was still listening. Above the whimpers from kids, hushes from parents, and bustle of nurses, I heard an eight year old boy saying, "I HATE you. I HATE you for always bringing me here!" His mother was stumbling over her words, broken, and softly crying "I have to bring you here." I wanted to go hug her. I wanted to get her some tea, wrap a blanket around her shoulders, and say "I know, I know, it's ok, you are doing an amazing job." But, I didn't. I walked past their corner, and asked her if he could have a sucker, and she nodded. He was happy with three...bless his heart.


I walked around the corner, and past a private room.There was a teen boy in there sleeping, and his parents were hugging. I felt an immediate sense of worry. Why was he isolated? Why did they look so heartbroken? Please let him be ok.... I went to the bathroom and splashed water on my face. I looked at myself in the mirror, not the way I used to..... I wasn't smoothing my hair into place, or dabbing on some (much needed) lip gloss...I was looking myself square in the eyes and telling myself  "Six more hours, you can do it. Fifteen more treatments, you can do it. Clear scans, clear scans, clear scans. Thank you God."

On our drive home I told Chris that I am changed forever now. I was a girl that would quickly change the channel when a St. Jude commercial came on, or heaven forbid I heard Sarah McLachlan start singing "Arms of an Angel," and an abused animal came on the tv screen. I couldn't look, it hurt too much. But now they are not faces on a tv screen, they are just on the other side of the curtain from us, with a name and a story. I can't change the channel, and I don't want to. I just want to help them.

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In the end....

I believe,that in the end only kindness matters. I believe, that you should always give more than you get. I saw a Kmart commercial today about a "Layaway Giveaway," and it featured this really fortunate looking woman, and flashed a big sceen tv and some other non-essential items. I wondered about the people who have three perfect toys on layaway, for their three perfect children. Those who are working an extra shift to make sure their kids know that Santa did not forget them. It hurt my heart. It made me feel guilty, and reminded me that the best way to give is without waiting for a thank you, a pat on the back, or a confirmation of how wonderful you are.

Last week, while we were staying on the oncology unit, Tay's little neighbor touched my heart. She is 6, with stage 4 leukemia. Her mom's neglect broke my heart a million times during our stay. Our little neighbor spent most of her time alone, very sick, and calling out for her mommy that was....unavailable. I tried hard not to judge her mom. There is no handbook for this, and I am very blessed to have a huge support system, but you better believe that when my baby is calling for me.... I will be there. She..... wasn't. So, I took care of her. We opened up the curtain, shared toys, songs, and anything else that would pass the time. At one point she was getting sick, so I stood by her bed,  and dabbed her head with a cool cloth. She looked up and said "you're pretty," and then slumped back in her bed. I wasn't pretty. I was tired and disheveled, but she saw kindness, and that was pretty to her. What a doll. What a precious, little, kind thing. The next day she was moved to isolation due to illness, and she cried out for me. It shocked me and broke my heart. Just two days after meeting this little girl, and she cried out for me. It opened my heart....my eyes.... to so many little kids...right here in Indiana who need loving parents and guardians. So I continue to wrestle with this...what can I do? How do I help the masses? It will come to me....and one day I will find a way to GIVE BIG.

 



Happy...

I can sleep. I have these beautiful night sleeps now. I don't wake in the night and cry myself back to sleep. I don't go peek in my little girls room, and beg God to let her outlive me. I cry happy tears. I don't cup my cries in my hands, or mask my eyes with my sunglasses. My tears don't burn my cheeks anymore. I have renewed strength. I know that I can fight through these last 5 months of treatment, and have my eye on the prize. I can see the light. I got my hair done, I made myself doctor appointments, I planned a date with Chris, and I bought some jeans that fit. I started caring again...... about me. I can't stop smiling. I can't stop dreaming of all that is to come. Clear scans, my gosh clear scans.



Patience.....

There is an old wives's tale that says NEVER to pray for patience.... good grief, I made this terrible mistake, and I have been tested. I am so tired. I work, love, pray, work, and work some more. I can't sleep at night. I pray myself to sleep every single night. I fall asleep mid conversation with God, thanking him, and begging him for the life of my girl. I'm exhausted.

So, I prayed for patience. The next day Taylor challenged me on everything. It's so hard to distinguish what is her being three, and what is her not feeling well. I have said it once, and I will say it again, that I am still trying to raise a lady. We still have rules, and our timeout corner knows Taylor well. My sweet little chunk of a baby boy has turned into a ferocious biter! He has the ability to make me swear like a sailor in the middle of Target while I unhinge his little jaws off my hand. Patience.

But today.....today was my ultimate test in patience. Taylor and I headed to the hospital around 7:30am. We had a really rough visit. There are days where Tay has fight in her. She gets MAD when the nurses do painful things, and then she bounces back. And then we have days where she doesn't..... and those days just break my heart in half. She gets quiet, somber, stops smiling, cries with no sound, it's awful. Today was that kind of day. On our way out, she was lounged back in her stroller, hugging her blankie, not speaking.  I just had to end things on a good note. She didn't want to say goodbye to the fish, didn't want to throw coins in the wishing pond (this has never happened)......so I pulled out my last trick, and knowing she is a girl after my own heart, I offered to go SHOP. We rolled into the hospital gift shop, and I said, "You were a brave girl, and mommy is SO proud of you, so you may pick out a few special things, let's shop!" She was SO excited, she clapped her little hands, and I knew she was smiling behind her mask. As quickly as I heaved a sigh of relief, I heard, "Well THAT is a slippery slope!" from a fellow gift shopper. I was stunned. It felt like this woman had reached out and slapped me. A SLIPPERY SLOPE? She was judging me, insinuating that I am starting a bad habit with my child. How dare her?! Of course I wanted to go into mama bear mode......but I didn't. I let her judge me. I know my heart. God knows my heart. I looked her square in the eyes and said, "Tay Tay, ANYTHING you want, let's shop!" This is not the first time, and it will not be the last time that people judge me. Patience.