Ruby using her white cane at school

Yesterday, Ruby arrived home from school with the sweetest little surprise in her bookbag — a DVD of her walking with her cane in the halls at school.

I haven’t seen Ruby walk with her white cane yet this school year, so I was over the moon when I saw how much progress she has made. At the end of the school year last year, she would unenthusiastically drag the cane behind her or drop it on the ground. Now, she really seems to “get” its purpose and is using it with skill. She definitely gets sidetracked at times, but overall, I’m so thrilled! And I wanted to share it with all of you.

Enjoy!

A letter to Ruby on her birthday

Six years ago today, you came into my life, arriving quickly and quietly around 7:10 a.m. The nurses and doctors had to scramble to make it into the room for your birth — you had no intention of waiting around for them. When you met the world, the room hushed as we took in your breathtaking beauty.

When the doctor laid you in my arms for the first time, it was as if I had been waiting a lifetime to hold you. I wanted to memorize every detail of your sweet little lips, tiny ears, long eyelashes and elegant fingers. But our first greeting ended much too soon as they whisked you away to the NICU. That night my empty arms ached to hold you.

For 56 days, I came to visit you in the hospital, leaving each evening without you. For 56 nights, I lay in bed, awake, anxiously wishing for morning to come quickly so that I could see you again. Some nights I couldn’t wait until morning, so I got up and drove to you as fast as I could, sighing with relief when you were back in my arms again. Rocking you amongst the beeps and chirps of the monitors, I felt whole again.

Today, the NICU is a distant memory, but my arms still have that same ache to hold you. Sometimes, I wake up in the middle of the night with that familiar longing. I slip quietly into your bedroom down the hall and lift you gently into my arms. Stroking your hair and breathing in your sweet baby breath as you peacefully sleep, my soul fills up to the point of overflowing.

Happy birthday, Ruby. Thank you for blessing my life in so many ways these past six years.

Love always and forever,

Mommy

Six years ago today

Ruby celebrates her 6th birthday on Thursday. This very day six years ago, I was admitted into the hospital for an early induction because Ruby was not thriving in utero. Though I was only 33 weeks pregnant, her doctor thought it was better to deliver early, rather than chance the possibility she may go into distress. I vividly remember the feelings of anxiety, nervousness and anticipation that I experienced that evening as I checked into the hospital.

There were things that I knew that day, yet so many things that were completely unknown. I knew that Ruby would be born with microcephaly and a bowel obstruction, but I had absolutely no idea that she’d also have a severe visual impairment, a PFO in her heart, a grade III intraventricular brain hemorrhage and debilitating hip dysplasia. I knew she’d be in the NICU for a while, but I had no idea that we’d celebrate Thanksgiving, Christmas and New Year’s there.

There were so many unknowns, yet somehow, I remained at peace with what lay ahead for me and for Ruby. I had given up control to the big guy upstairs, because somehow, amongst the madness, I knew that he would protect and provide for us.

Six years ago today, I had absolutely no idea that I would look back one day and see all of the fear and anxiety that I was experiencing as just a distant memory; a scary step toward an amazing future.

The iPad addiction deepens

Ruby has had her iPad for four days, the past two of which she has woken up, wiped her sleepy little eyes and said, “I wanna play with my iPad.” It’s not only cute, but also a testament to the addictive qualities of Apple’s products. I’m not sure if Steve Jobs had my daughter’s demographic in mind when he designed the iPad, but he has certainly created an avid Apple fan.

Ruby loves playing with the various flash card apps that I have downloaded for her, most of which are free or only $.99. There are also some very cool books, like this free Toy Story read-along book, which features the character’s actual voices. I’m pretty sure we’ve only scratched the surface of this amazing device’s capabilities, so stay tuned for further updates as we explore the iPad more over the next few weeks.

Ruby using her new iPad

Yesterday, I bought Ruby an iPad. After reading several articles on how user-friendly the iPad is for children and adults with visual impairments, I was sold.

In this video, she is using the free Smart Baby App My First Words. This is the first time she is using it independently. It took only a minute to teach her how to swipe the screen to change the flash cards. She does periodically bump the screen with her nose, which causes the flash cards to advance, but I will work with her on keeping her face back far enough from the screen so this happens less frequently.

I am so excited about the potential that the iPad could have for Ruby once she learns how to use it. Stay tuned for a longer review once we get more opportunities to use it!

How does your child use his/her iPad? Leave your ideas below!

Giving credit where credit is due

Yesterday, I took Ruby to a check-up with her ENT, who she has seen since she got her first set of PE tubes at age one. After Ruby passed her hearing test with flying colors, he took a peek in her ears and asked her a few questions, which she cheerfully answered, much to his surprise. He told me how astounded he was with her language skills and overall development.

Like many of the doctors that Ruby has seen since her birth, her ENT never imagined in his wildest dreams how far Ruby would come developmentally. When she was born, doctors thought her small head size would be a sure predictor of debilitating “mental retardation” and her vision impairment would only intensify the deep degree of disability she would have. Couple that with the fact that I am a single mom and all Ruby’s doctors thought she was doomed to a life with little to no development or progress.

But when that same little girl they once thought was doomed is standing in front of them laughing, walking, talking and generally just lighting up the room, it rocks them to their very core. It defies all of the medical books they’ve read. It goes against all of the studies they’ve studied. It’s a miracle.

After her doc shared his excitement over Ruby’s development, I said to him (but more so to myself), “She’s pretty amazing, isn’t she?” And he was quick to reply, “She sure is.”

Then he said, “You know you deserve all the credit for how amazing she is, don’t you?” And I had to sit there for a minute to absorb the words as they coursed through my head and into my heart. I wasn’t sure what to say, so I just said, “Thank you.”

But my response should have been: “You are wrong.”

Yes, I work hard researching and getting Ruby into various therapies, I make sure she gets to all of her medical appointments and I try to teach her as much as I can. I feed and clothe her and love her to bits. But I can’t take all of the credit for the progress she has made, this little girl who never stops trying and never complains — and does it all with a huge, glowing smile on her face. She deserves the credit.

Because without her strength and sheer determination, all of my efforts would be for naught.