Saturday, June 20, 2015

Looking Forward with Hope

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

by AJ Tesler

I remember the day my daughter got diagnosed with Rett Syndrome.  I remember sitting in the doctor's office and listening to her tell me about Rett Syndrome.  My mind was awash with questions - questions the doctor didn't have answers to.  I remember the feeling of helplessness and despair for what would happen to my daughter.  I remember the grieving period, the feeling that we had lost everything.  Thinking back on that period still hurts.  Looking back, I find, usually does.  But in that time, looking forward hurt more.  Not any longer.

I remember when it all changed.  When instead of being sad for myself or my daughter I decided to take action.  I called everyone I could get a hold of.  I asked questions.  I started volunteering for Rett Syndrome events.  I make videos for a living, so I started making videos to share with the world.   For me, and I imagine for most people, the faster I can help find a cure, the faster my daughter can overcome Rett Syndrome, and that gives me great purpose.  Being her voice has been the greatest pleasure of my life, and has given me purpose unlike anything I've felt compelled to do previously.   And that allows me to look forward with hope and optimism.  Being proactive for Maggie and for Rett Syndrome research, has allowed me the chance to dream and believe and as a result, those dreams have turned into certainty and at this point, I'm 100% positive that we will cure Rett Syndrome in her lifetime.

My wife and I, in periods of Rett difficulty, will remind each other that "we will win this."  I look forward to the time when I can correct that mantra.  Someday, it'll be nice to say  "we won."

Gus' Gift

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

by Gus Rodriquez

I have three inspirational characters: Nick, Vivian, and Bea. Each one has different strengths and weaknesses, yet it’s been my experiences parenting Bea that have made me a better father to her siblings. To say she inspires falls way short of the plate.

She is truly beautiful, and I could stare at her for hours. Her eyes- beautiful as a clear blue sky, have a way of melting my stress and fears away as she reminds me to see the true treasure of life: family. Watching her fight Rett syndrome is not easy, but much easier than living with Rett Syndrome is for her. I look at Bea and see how strong she really is with every day that passes. The small things we take for granted everyday really make you think twice about complaining. Things like “my leg hurts; I have a pain in my back; I have a headache,” things like this I suppress and keep to myself because I watch my little Gwaggles (that’s her nickname) go through much more pain than any of us can imagine.

Because I see how tough my 4 year old is, I tell myself, “MAN UP!” This is what comes to mind when she gives me that stare, KNOWING that I am on my last bit of energy. Beatriz is my strength and courage. The joy she puts in my heart melts all discouragement away, and always gives me the jolt I need to accomplish any task thrown my way. I tip my hat to her for the simplest things in life: love and happiness. She truly is a gift!


While Gus sees his daughter as a gift, he himself is a gift to his entire family. His wife, Suzanne, shares their story together, one that exemplifies the word "Dad."

There’s no doubt that the bright-and-center star of our family is Bea, but it’s my husband Gus who’s the unsung hero of our Rett story. He proved he’d make an AMAZING father the first night I met him. I just didn’t know it because we didn’t share more than 5 words. Gus and I met on a kickball field. He was the captain of a team that I joined simply because I liked the charity they played for. Although our only interaction that night was exchanging names, he did, however, spend the bulk of that first night chatting up a storm with my then 4 year old son, and we have a photo to prove it. As the season progressed, we got to know each other and eventually became a couple.

He’s from a large, blended family, which is probably why he took to his fatherly role with Nick easily. There was no stopping these two and I admit to being jealous early on. Nick was “mine,” not Gus’, but I couldn’t deny that Nick was thriving from the interaction with Gus, or that it made me VERY happy. Then came the ring. Then came a lost pregnancy.

People often think that a mother’s love is stronger than a father’s love because mothers carry the children, but I watched this man grieve in a way I had never seen anyone grieve before. He was a father mourning the loss of a child, and it was then that I began to see how strong Gus is. Where I was a near-lifeless mound of sorrow and crumpled-up tissues wherever I went, he was stoic, steadfast, and cheerful when faced with Nick’s difficult questions. He held down the fort and every semblance of normalcy that mommy couldn’t for Nick. Just short of a year into this parent role and he was already a better father than most. When our first daughter, Vivian, was born the following year, it was as if his heart exploded with love.

Vivian came early, weighing just 5lbs. She was in two different NICUs for 11 days. And once again I was witness to his strength. For 11 days, Gus commuted an hour each way, worked his 8 hour job, and visited the NICU every three hours from 10 pm to 6am so I could get my rest at home and be with Nick. When she finally came home, he was in heaven with his little family and shared that joy with everyone within earshot. You could literally feel love and happiness when within 6 ft of him. So much love that 6 months later, we were pregnant again! He was dead-set on us raising our children versus daycares or nannies so he took on extra jobs to account for my lost salary. When Beatriz was born, he was once again father of the year as an eager volunteer in all things baby. Who wants to change diapers? This guy. Who wants to burp the baby and get puked on? This guy. He is as hands-on as it gets, and I often heard (still do) from friends/relatives/other moms that I was “so lucky” because their husbands didn’t share in baby duties. Despite the busy schedule he kept so he could provide for our family of 5, he was never too tired for cuddles, a book, dress-up, baseball, or bear hugs.

When Beatriz turned one and her “quirks” turned to health concerns, Gus’ strength stole the spotlight again. We were slapped with our daughter’s mortality and told that while there were no guarantees about when she would die, they were sure she wouldn’t “live.” Rett was like being trapped in a body that didn’t work. It would have been completely understandable for him to walk around like a zombie, I was after all, but Gus went on to work and went about his day, because that’s what his family needed.

It’s often said that we are tested not to expose our weaknesses, but to discover our strengths. Gus has hit a home run with every curve-ball thrown at him. He even helped one of my best friends escape an abusive relationship by opening our home to her and her two children, and was happy he could help them. He makes everyone feel like family. These days he still works multiple jobs to provide, and while he can’t be at every doctor’s appointment or therapy visit, he’s texting me like a crazy person until I update him. He comes home and is hands-on with dinner, baths, homework, and housework (including laundry mountains). He’ll then head to his “office” and spend hours scouring the internet for treatments or activities, or videos on how to adapt toys for Beatriz. “Selfless” falls short when it comes to describing Gus. He is the glue that holds me together. He sets the example of what a man/father should be for Nick, and the type of man we hope Vivian and Beatriz bring home one day. What more could I have asked for in a husband?