Make-A-Wish

Dan: "I though Make-A-Wish was for kids diagnosed with a critical illness...that is placing the child's life in jeopardy?" 

Tina: "Yes, it is and that is our child."

Realizing that Olivia's diagnosis of Lennox-Gastaut Syndrome (LGS) falls into that category is scary, but it has also opened this beautiful door to her getting a hot tub! When we thought of potential wishes for her, these were the top 3 we noted:

1) Hot Tub (loves water)

2) Meet Matthew McConaughey (listens to his audiobook just about every night)

3) Accessible Bathroom Reno (much needed as she gets bigger)

After careful consideration, the hot tub seemed to be the best fit. The experience from start to finish with Make-A-Wish has been absolutely incredible. Just last year the PICU doctors were prepping us to possibly lose her and this year we now celebrate her life and love for water. Timing has been spot on from every phone call to the date of delivery. It has overturned the hurtful memories of certain days to joyful ones. Thank you so much to everyone who was a part of this journey and made it so special for Olivia and all of us too. 

Make-A-Wish Photos

Morning of her Make-A-Wish Dream Come True

Patiently Waiting

Hot Tub Has Arrived

Thank You To Marquis Spas For The Hot Tub!

Thank You To The Installers!

Olivia's Sign Made By The Volunteers :)

Thank You To The Electricians!

We Finally Have A Hot Tub!

Amazing Team & Volunteers :)

Testing Out The Water

It's A Win!

Can You Tell She Loves The Water?

Thriving! 

Caregiving Mama & Olivia

With Care

Grandparents, sometimes our kids other set of parents while others not so much. We are lucky to have some good ones and unfortunate to have experienced the other ones. During the NICU period where we first received the diagnosis news for Olivia, both our moms were present. They came to visit us regularly at the hospital and made sure to check box our every materialistic need. My mother-in-law would see a need, such as a mommy bathrobe and come back to the hospital with one for me. While my mother made sure Olivia had every outfit needed as a preemie. What they couldn’t fill for us though was our emotional needs. No one could at that point and that’s something I am still coming to terms with.

As I continue to heal from a loss of personal expectations, I am realizing that they too have a healing journey from that trauma. It’s not their fault they couldn’t say the right thing at the right time. No one could. We were filled with so much anxiety and fear that any positivity during that period felt like invalidation causing offensiveness. Because I didn’t have the mental capacity at that time to see outside of my own hurt, I couldn’t recognize that this was a brand-new journey for all of us. I can’t imagine a grandparent’s point of view, seeing their own kid mortified and grieving for their grandchild’s health. For the first time, I think both our moms were in a state of shock to where typically saying, “It will all be okay,” couldn’t ease our pain anymore like it did as kids.

I can admit I shut-off towards everyone including them. It was necessary for my mental health. But each of them never stopped pursuing and supporting in any way possible. As Daniel and I learn what we need and when to ask, they too learn how to help and advocate. They may be a little too fierce at advocating sometimes but it’s all with love and care. We get to witness first-hand the sacrifices our mothers have made for our daughter, and that wouldn’t have been possible without first healing. It was mindfulness and empathy that helped me see past our own sacrifices and realize how much others truly care for us. So, thank you! Thank you for your dedication and love! Grandmas are such a blessing.

Passionate Powerful Soul

 

Parenting is tough but I’m sure you already know that. Either from experience or by hearing it from family or a friend. I was well aware of “the differences” that could take place before having a kid. What I didn’t factor in was the emotion that tags along with it. I am a Puerto Rican/Filipina Pisces woman, so let’s say I have the ability to dive deep into emotion if need be.

 But when it came to our one and only daughters’ life on the line at the time, I couldn’t do it. When Olivia was on life support at the hospital, I not only saw you step up and take lead, I witnessed your emotional vulnerability. My dear loving husband, seeing you cry on the front porch in your moms’ embrace still plays through my head as I sat merely steps away. Sitting side by side to you on the living room sofa, listening to you open up as I sat stoic, staring straight on, refusing to move a muscle is ingrained in my memories. We have always gone through trauma together, but my survival mode said, “no, not this time.” I couldn’t bare another miscarriage at a whopping 8 months pregnant. I needed to protect her, so I didn’t dare let emotion take over. Which was partly true but let’s be honest here, my brain just couldn’t fathom reality either. It was the first time my soul felt separated from yours. I was a bystander watching you go through deep sorrow and grief during the darkest time in our lives. I’m sorry I couldn’t be present with you this time but I’m so glad you found what you needed elsewhere to survive. But now it's my turn. My turn to feel all the unpleasantness but I’m not scared. I know you’ll help walk me through it.

The trials we’ve both experienced with our daughter has 100% evolved us into new human beings. It’s in the way we make decisions, looking at all obstacles and perspectives, outweighing pros and cons, researching data for informed decision making. It’s in the way we experience emotions, learning to fully and presently feel despite the vulnerability that brings. It’s in the way we argue, knowing that current issues are not as important as we thought they used to be. We can interpret what each other is longing for whether that’s space, quality time, sleep, or food. I’m hard on you as a parent and I see that. I’m sorry, still working on lessening the reins. But even in those moments when I’m upset because our baby Penelope is upset, you handle the situation with care. I am so proud of you as a father and a husband. This love we have for one another has matured into something so beautiful, so powerful, and so passionate.

We lean into each other’s arms during tragedy, and intertwined it creates a beautiful tightly woven rope. A strong rope we can tightly grip when the waves crash over us. To be vulnerable is to be strong, to be honest is to be strong. This relationship has been what feels like tested and stretched thin but yet remains. Statistics are not high for a marriage that has a disabled child. But we know that, we know that the “Magallon Odds” as we call them, are often times not in our favor. But the daily commitment to ourselves and to each other helps keep us accountable. We refuse to give up in every aspect and so we will continue to ride the waves together. So, here’s to us, celebrating our boss selves. Happy anniversary mi amor!

#HopeForOlivia

 Hustle for Hope 5K - The Seattle Way

 One and half month later, better late than never! Not only did we participate in our fourth Hustle for Hope 5K during HIE awareness month in April, we hosted it! Olivia was diagnosed with hypoxic ischemic encephalopathy at birth. It's a type of birth injury causing newborn brain damage that is caused by oxygen deprivation and limited blood flow. Hustle for Hope was created by the non-profit organization Hope for HIE to increase awareness, education, and support. It is an informational month for us to educate others about her health. We had enormous family and friend support walking, running, and rolling for Olivia at just over 60 attendees. We had some fun doing raffles, games, and face painting that raised a total of $3,000 towards the group Hope for HIE. We had pictures that hashtagged #HopeForOlivia #HopeForHIE #HustleForHope #ConnectedByHope. This year not only was it Hustle for Hope 5K - Olivia's Way, it was Hustle for Hope 5K- The Seattle Way as we represented the West Coast. 

Below are the 2023 Hustle for Hope 5K photos
Thank you from the bottom of our hearts to everyone who is helping to make this a yearly tradition :)

It's okay mama

 

This event became bigger than I imagined. Our Hustle for Hope 5K- Olivia’s Way not only celebrated her life and raised awareness, it also helped breathe life back into me. At the beginning of this year, I decided to nudge myself back into the world. At this point I was now 3.5yrs quarantine, not because of covid but because of my daughter’s fragile health. I did a tremendous job at creating a bubble that kept our family safe from illness as long as I could.

Hope for HIE started looking for “hustle hosts” to host in-person events this year for their area. So, I made the commitment to become one for Seattle, WA. I felt like my 7-month-old baby, learning the familiarities of the world again and taking that wobbly step forward with anticipation and determination. I soon received an email noting that Seattle Children’s Hospital Neurology Department wanted to partner with me on the event. Olivia’s first neurologist recognized that we were behind the event for Seattle, WA and wanted to support us. I was in shock, in awe, and I felt seen. I looked at the quote taped next to my bathroom mirror, “Nah, bigger! -God,” so each time that nervous or anxious feeling would try to arise, I would think, “It’s okay mama. This is supposed to happen, this is going to happen, so let it happen.”

I am so proud of myself for seeing our event through and not giving up. The overwhelming amount of love shown for our daughter was reason enough. This event did more than raise awareness for HIE, it solidified my decision in letting the world be apart of our lives again (not just virtually anymore). The next day after our event, a beautiful rainbow appeared in the sky, fully visible from our backyard. I thought to myself, “it’s okay mama, the rain has stopped, we made it through the storm and to the other side of the rainbow.” 

 

(I discovered that's my family in the bottom corner, how cool!)