Down Syndrome and 10 things I’ve learned

Note: The essay below by Michelle Ressa-Aventajado first appeared on her website, mommanmanila.com. To mark the first day of Down Syndrome Consciousness Month, the piece is republished below in full. Michelle shares what she’s learned from her daughter Gelli, who has Down Syndrome. 

It’s been more than 3 years since I gave birth to my last baby.

I wasn’t prepared for her diagnosis at birth. Or rather the suspicions due to “markers for Down Syndrome,” as the doctor said, when she spoke to me and my husband, Nino.

We prayed she would be all right after confirming that she needed corrective surgery due to duodenal atresia.

Nino was so fully present at this time. His faith in God was so much bigger than mine. His love for our daughter and for our family helped bring me through… 

Without realizing it, I automatically put all these limitations on my daughter the moment I heard the words “Down Syndrome.” My perception of what Down Syndrome was, was so far from what I now know as our reality. I still need to forgive myself for those first few days…even for those first few weeks and months.

I was incredibly ignorant of what her extra chromosome was all about. Even now…I know that I still have so much more to learn about who she is and who she can become…the same way any parent would learn about their own typically developing child who is soon to turn 4 years old too.

I have a lot of regret about the first few weeks of Evangelina’s life. 

I wasted far too many tears, and worried about far too many “What Ifs?”

I wish I knew then what I know now.

I was all over the place with guilt, fear, anger, and sadness that I didn’t see the tremendous gift I was given. I worried about her health, people accepting her, what school she would go to here in Manila, and whether or not she could stand for her older sister as maid of honor if and when she would get married.

Doesn’t that sound a bit crazy? Admittedly, this was one of my first thoughts while still laying in my hospital bed after giving birth.

I cried because I thought my eldest daughter would some how lose out on the sisterhood I envisioned for her when we found out we were having another girl.  I cried because I thought she wouldn’t be able to do things for herself. I cried because I thought my daughters wouldn’t be able to call each other up when they were older with their own families and share recipes and giggles on the phone. I cried because I thought my youngest daughter would have so many limitations. 

“The only limitations you will ever have are the ones you put on yourself.” -Kristinna Habashy (or in this case…the ones I put on MY own daughter…)

I cried a lot.

Truth:  I still cry a lot. 

But my tears are much different three years later.

The difference? I cry when I’m happy, when I’m grateful, and when I am reminded that God is good. Parents with children who have special needs have said it a thousand times over in so many different ways. This kind of parenthood changes you in a way that being a parent to a typical kid cannot. It’s the shift in perspective. It’s the realization that we are all connected, that it’s more than just this. 

So, today, on the first day of Down Syndrome Consciousness Month, I share with you the many things I have learned in raising my daughter, Gellibean.

February is Down Syndrome Consciousness Month and for our family, that means that we make the extra special effort to share what we have learned and promote the love, acceptance, and inclusion that we need to make the world a better place not just for her, but for everyone else who has been gifted with an extra chromosome.

Gellibean has given us more than 3 beautiful years of milestones in her own time, a fresh perspective, an incredible unconditional love, countless smiles, and more than we could have ever imagined. She has encouraged us to be better versions ourselves without even knowing the changes she was causing us to make.

Don’t get me wrong. All this love doesn’t mean that we don’t have challenges in parenting Gelli. We do.  This is why the milestones and the small victories are all so worth celebrating!

To celebrate Down Syndrome Consciousness Month, I thought I would share the many things I have learned along the way.

It’s good to be organized!

Gelli has given me the gift of organization. It’s important to be organized so that I can take care of my daughter and set all of her doctor’s and therapy appointments. She has instilled a diligence in keeping appointments AND because of that, I am more organized in general.

Understanding unconditional love

Gelli has given me the gift of unconditional and pure love. I received this same love from my three big kids…but Gelli’s love is just a little different…as is my love and devotion to her is just a little different too. I celebrate the differences of all of my children and I am able to love them each in the way that they need me to.

The gift of prayer

I understand the power and gift of prayer. Never before have I prayed with my children the way we prayed when we so desperately wanted her to come home from the hospital after almost two weeks in the PICU. It was a teary impromptu moment full of faith and love that I will never forget.

Don’t sweat the small stuff

I finally understand the meaning of  “The Big Picture.” So often, I have been caught up in the details and things that aren’t as important as I once thought. The idea that I shouldn’t “sweat the small stuff” is my new philosophy. You could also call this one PERSPECTIVE. Put it all in perspective and I’m sure it will all be ok.

Our support network

I have a newfound appreciation for all of those people who love and care for our family. For some reason the fluff, (a.k.a. the people that didn’t matter as much,) have fallen to the wayside. They have slowly eased their way out of my life and I can see that those who love and want to be with us have an even deeper sense of love, commitment, and level of caring for our family. I hold these loved ones near (and far) oh so close to my heart. 

The gift of happiness

I finally understand the meaning of “choosing to be happy.” With all of the terrible things that go on in the world on a day to day basis, I understand that finding happiness can be in the littlest of celebrations and milestones that many people take for granted. 

The gift of being empowered

I am empowered. Yes! Believe it or not, my daughter empowered me to stand up for what I know to be right and true and good in this world. She has inspired me to fight for her and everyone just like her. 

The gift of my voice

I found my voice. I write. I share parts of her story and parts of my story with other parents. I find joy in this sharing. Gelli’s birth has enabled me to help other parents who are new members to our special club.

People who really CARE

I have met incredible people. Doctors who are so good at what they do. Therapists who care. People with varying abilities. Parents. Children. Adults. All those who share parts of themselves with me and Gelli. It is truly is incredible.

I will continue to navigate the uncharted waters with many of these people as my mentors, guides, and my friends as Gelli continues to grow up and teach us new things. 

The gift of togetherness

I’m part of something bigger. I know that “We are all in this together.” This basic yogic principal is my mantra. I am more compassionate and empathetic. I am not as quick as I once was to pass judgment. I’m patient. Kindness is so much more important now. As a family, we look forward to meeting up with other families like ours too!  Both DSAPI and Best Buddies have given us the opportunity to share our cause and our LOVE for Gelli.

Be on the lookout for the different activities all month long to celebrate Down Syndrome!

February 6, 2015: 

 

• 12^th Tee-Up for Down
• Tagaytay Midlands Golf Club
• Shotgun start at 8am. Registration at 6:30am 
• Ticket: P3,000 (inclusive of Green Fee, Cart, Lunch& Giveaways)

 

February 8, 2015:  

 

• United for Down (FREE Clinic)  
• 8am-5pm, Crown Plaza Manila Galleria, Ortigas Avenue, Quezon City

 

February 22, 2015:  

 

• 13^th Happy Walk
• 7am – 4pm, Skydome, SM City North EDSA
• Registration Fee: P50 (Free for individuals with Down Syndrome)

 

February 27, 2015:  

• Dine for Down Take 2  
• 6pm, Highlands Prime Steakhouse

– Rappler.com