The Mother in Me

Almost four years ago, Ania made me a mother. 

Instantly in love and a natural desire to be my best for her.  Once again I think of the butterfly analogy that keeps popping up into our lives right now. Becoming a mother, is also like the metamorphosis a butterfly goes through. Layers of selfishness are shed. A world suddenly opened up to new places to fly and explore with these new little people I cared for. My heart was opened up to a new level of love thanks to these tiny babies who grew in me out of love! 

Ania gave me the gift of becoming a mother and opening my "mother heart". My dear Kellen showed me how big a mother's heart can be. While pregnant with him, I had that irrational fear that many mothers have that you could not possibly love another child as much. So irrational. My mothers heart grew and grew!! This little boy captivated me and allowed me to love even deeper! 

Of course, I owe a lot of who I am as a mother to the other women who have graced my life and taught me the ancient "craft of motherhood."

My mom Julee and me. This photo just says it all. The look of adoration in her eyes as baby me experiences the simple joy of a flower. Thank you mom for allowing me to explore my world and for teaching me the ways of motherhood always through your loving guidance. 

Ania was born after her great grandmother Marilu passed away so she never had the pleasure of meeting her. However, I think she shares her smile and sense of joy with her. 

 Marilu : the Original Mimi, Queenie & Pookie! 

Marilu was always laughing and knew how to captivate others through joy. Even though it's been several years since her passing, I can still recall the sound of her laugh! I'm certain she is smiling down and very proud of Ania! Thank you Mimi for teaching me joy! And the power of a smile! She smiled all the time and people loved her for it! 

Ania Elaine has part of her name from another special mother figure:

Elaine

My grandmother Elaine ( I call her Nanny) is a huge part of who I am as a mother. The wisdom she imparts on me still motivates me to live my best and most fulfilling life. Her encouragement has lead me down many productive and creative paths. The artistic nature that both Ania & I have come from her as well. She is a painter and clay sculptor. When I was little, she always had me drawing and painting in her studio. 

There is another, however, a bit more somber reason I relate with my grandmother Elaine. She is a mother to 3 children- David (my dad), Tom & Nancy. 

Sadly, dear Nancy lost her battle with Leukemia at the age of 7. My grandmother faced the ultimate fear any parent of a child with cancer faces. The loss of a child. I can't imagine. I'm sure watching Ania go through the struggles of cancer and watching me, the mother go through the struggles of parenting a child with cancer just tears at her heart and reminds her of some dark times. She  however continues to demonstrate such strength and wisdom for me as I battle through this. I couldn't do it without her and I am glad I have her guidance to persevere. Thank you Nanny for being such a pilar of understanding strength and wisdom. Your grace is inspiring. You are the warrior mother I look up to most of all. 

Mother of Mike, Patty:

Thank you to Patty for Mike as well! You raised a good man who loves his wife and children very much! I know he and I both admire your strength through many of your own life trails. 

Generations of Woman:

Julee, Me & baby Ania, Elaine & Patty

Finally, I have to thank my children again for being my flowers in my garden of life. Like a butterfly, I am drawn to them always! My life is more beautiful with them a part of it. 

Happy Mother's Day indeed! 

God Bless,

Erica

Chemo Cycle 2 Summary

What a long few days....

Lots of sickness and an extended stay- yet we are now one step closer to being finished. Phew! 2 down, 4 to go!

A little pre-chemo snack of homemade banana bread :) she also danced and had a bedside magic show beforehand. 

It disappeared!!

Where could it be?! So fun!

painting mommy's fingernails :)

Riding her little car& hooked up to pre-chemo IV fluids- all while wearing her superhero cape of course :)

She had her chemo started a little after 3pm. She did well for the first 3 hours- then the sickness hit and we had a long night ahead.

She was up every approximately every 30 minutes. Zofran didn't help much at all with the nausea :( 

The next morning...

Venturing out...

The next day she had her second dosing of carboplatin and we expected to go home in the afternoon. I went home to be with Kellen and my mom stayed with her. I heard from them around 3:00 saying she was throwing up again and there was a good chance she would stay the night again to avoid dehydration. Good thing my bags were still packed. I made my way back to stay the night again. 

She slept through the night thankfully so I assumed we would go home in the morning. She woke up and started to get sick again :( however, her spirits were good so we ventured out of her room for more riding around on the pink car and some painting. She would "pull over" every once in awhile to get sick but she would start back on her ride as soon as the sickness passed..... What a champ!

We made a "pitstop" to paint :) 

She painted a car for her brother :)

And a butterfly of course :)

She wanted to give her butterfly "googly eyes" so I brought out a box of eyes. Clumsy mommy dropped the box of eyes.... The table and floor were now covered with hundreds of "googly eyes"- and I couldn't help but laugh at the irony of why were in the hospital in the first place...eye cancer... And I just dumped eyes all over the place.... Ania might have been thinking the same thing because as we picked up all the eyes, she did this: 

"Mommy! Look at my new eye!"

she said :) 

We were discharged around 1:00pm and I think it's exactly what she needed. She was happy to be in her home indeed! She ate, played and did not get sick again :)

Kellen was happy to see her!

We were able to enjoy the beautiful weather! We played outside and she even worked on her jump rope skills!

Picked flowers

And of course, danced with butterflies while wearing her own wings :) 

What a beautiful spirit my dear child has! She's faced so much in the last 48 hours and STILL finds it in herself to dance....

Thanks for all the prayers and good thoughts sent our way! 

God Bless,

Erica

Villa Park Fire Department Meets the Dainty Warrior

This weekend we had quite an adventure! Back in March after Ania's story aired on NBC, I received a phone call from a fireman named Brandon of the Villa Park fire department. He said that he and the crew were watching the news the night it aired and they were interested in having Ania paint a fire truck for them to hang in their station. I just love the thought of these everyday heroes being moved by Ania's story! So of course, Ania went to work on a painting for them!

And of course, they loved it! 

Here it is as a print on etsy:

https://www.etsy.com/listing/183992249/firetruck-dainty-warrior-print

Anyways, fast forward several weeks later and we got the opportunity to bring her finished painting to the firehouse! Ania and several of her friends got to take a tour, spray the firehose, try on gear & play on the fire trucks, ambulances and a police car! Oh and have an ice cream social with Villa Park's finest! Ania also got to meet the beautiful 11 year old niece of one of the policeman- her name was Lelaina and she traveled all the way from Iowa to meet Ania! Lelaina is a retinoblastoma survivor who also wears a prosthetic eye!  We are honored that she came to be a part of this special day! 

Here are the pictures to show what an unforgettable day we had! 

Fire hose!!

Dress up! 

Ice cream sundae time!

 

The police gave her a special kitty dressed in police uniform- she decided to name her "Lady"

The fire department gave her a very special gift as well- a custom made Dainty Warrior Fire Fighter helmet! It is a real helmet painted sparkly pink! It's beautiful and quite a treasure! 

She's a natural! 

Once the party was over, Ania chose a spot on the wall of the firehouse to hang her painting! 

The day spent at the Villa Park fire department is one we will never forget. Ania and her friends were shown such a wonderful time that each of them will treasure for a long time! We are honored to have been in the presence of these everyday heroes! The kindness shown to us this day once again demonstrated the power of the human connection. Thank you again Villa Park FD & PD for saving lives and changing lives- each and every day!

God Bless,

Erica

 

 

Smiling Eyes

On May 16 we will finally meet with the ocularist (eye maker). I am very excited to see Ania with an eye again. She has had a little harder time accepting the idea. She has said she just likes wearing her pretty patches and doesn't want a new eye. However, I can also tell she is getting sick of people asking her what happened to her eye. If other kids ask her, she handles it well and just tells them it's because her eye is broken. Little kids move on quickly thankfully. When adults ask her, she just kind if shrinks and looks sad and does not answer. It's as if she's embarrassed or afraid to answer. It breaks my heart. 

The last few days I've been telling her that people will stop asking her "what happened to your eye" once she has that prosthetic. She's beginning to warm up to the idea. In fact, the other day she came to me and said, " Mommy, your eye is not broken." I said, "yes you are right. My eye is not broken."

She then said in a very matter of fact way, "Mine is. I'm going to get a new one. I'm excited!!"

It was a breakthrough! To hear excitement from her about it made my day! 

Yesterday, we had the fantastic opportunity to meet a fellow retinoblastoma survivor. Over 20 years ago,a  girl named Hannah was diagnosed and subsequently lost her eye as well. Hannah is now a very sweet young lady who reached out to me back in March after Ania's story aired on NBC with the hopes of meeting Ania. That meeting finally became a reality and it couldn't have gone any better. Hannah arrived and we sat around the table and chatted about her cancer story. Ania just watched her and was a little shy at first but she warmed up to her quickly. 

Hanging with Hannah :)

Hannah then brought out 7 little boxes. Inside those boxes was the history of her "eyes." She took each of the beautiful works of art out and just let us look at them. Ania was a little afraid to handle them at first but slowly she became more comfortable. 

While Hannah and I were talking, something sort of magical started to happen-

Always the creative girl, Ania started arranging the eyes into a smily face! That just made my heart jump for joy because that showed me that she really was ok with all of this. I know when we show up to meet the ocularist, it will be a little less scary for her because it will be familiar- and I'm sure they will have lots of eyes for Ania to arrange into artwork :) 

Thank you to dear Hannah for making Ania more comfortable with what's to come. You really did a huge favor for us and made quite an impression on Ania! 

God Bless,

Erica