#HopeForOlivia

 

HUSTLE FOR HOPE 5K - THE SEATTLE WAY

 April is HIE awareness month, and this year was our fifth Hustle for Hope 5K that we participated in. Not only did we participate, but we also hosted again this year for Seattle. It was created by the nonprofit organization Hope for HIE to increase awareness, education, and support. 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. We are hoping to transform a diagnosis that is so devastating to families, into now being a way to connect with them for added support on this journey. This year we raised $3,000 and had 82 in person participants. Thank you to everyone who made this happen! 

#HopeForOlivia #HopeForHIE #HustleForHope #TransformingHope

Below are the 2024 Hustle for Hope 5K photos
Thank you from the bottom of our hearts to everyone who is helping to make this a yearly tradition :)

She's "that mom"

 As my birthday approaches each year, I like to post birthday trivia questions on social media so others can learn more about me. The day before I started to post, my husband told me to tell him something about my past as a kid that he didn't know. Ten years into this relationship; I really had to stop and think about stories he's never heard yet. That comment pushed me to do some deep reflecting, as I didn't realize some of the trauma I experienced at a young age caused me to block some of my good and happy memories out too.

This year's questions were more than just surface level, "what's my favorite color?" They were more thought out. I was able to finally recall these little souvenir moments I had completely forgotten about. Such as playing the trumpet in band, thinking that maybe one day I could make it a career. Or naming my imaginary dog I used to play with outside. It also sparked an important question, "who am I?" Of course I went down the list of titles, I'm a mom, a wife, a Jesus follower, an office manager, a sister, a daughter, etc. But being a mom stood out to me. The adjustment a person makes from an individual responsible for themselves, to now being responsible for a little human being is substantial. 

I had an idea of the kind of mom I would be. Definitely not "that mom." What does that even me? Well, someone who's classified as difficult and over the top. You might hear, "she's that mom, the mom who always fights back. She's the mom who always asks questions, she's always demanding." I analyzed myself and started recognizing those same characteristics. But I realized all of that was just surface level. I was "that mom," the one working through therapy trying to heal. "That mom," ready to break down at the next advocacy meeting. "That mom," who just got done crying over the enormous responsibility of caring for a medical child. I'm not flawless, I do continuously work on actions and reactions, but I do also promise to not judge others on their "off days." Because in the end, we are all going through our own situations. So next time someone asks, who is Tina? I will proudly say, "I'm that mom," because I know it means I'm putting in work.

I did all I could, right?

 

There seems to be a reoccurring theme of frustration on this journey. I would argue most of that frustration being valid. When you get a chance to see life in a different perspective, you get the chance to experience it in a new light as well. My eyes began to witness the injustices for the disabled community, the inaccessibility this world offers, and the lack of awareness of all that and more in mankind. You ever see someone post a need on Facebook and instead of responses noting they can help with that need; you’ll see links to organizations or suggestions outside of that need? Frustrating!!! I get it, people are just trying to help. I used to be that person too but now being on the other side, I can see how unhelpful that really is. There are most definitely numerous organizations out there. Some claiming they have all the resources for solutions to our problems, but you must jump through hoops to obtain even the smallest bit.

I was recently venting with a friend who said, “I get it. You can’t let it go because it’s wrong what they’re doing.” That’s the type of person I am. I was attempting to find solutions for Olivia’s transportation now that she is growing bigger. Our current vehicle was too small at this point. Every time I drove, and mind you I am on the petite side, it was knees to the dash with steering wheel in the lap and pray to God you don’t get in an accident on the way. I brainstormed with Olivia’s caseworker on solutions. I was told to price different options, so I did just that. I called and emailed multiple vendors and received quotes anywhere from $25,000.00 - $35,000.00 to convert a vehicle to become wheelchair accessible. That price would be on top of the price of a new vehicle. I went back to the caseworker with this information, and she mentioned in order for DDA to cover it, the vehicle would need to be 3yrs or newer and less than 50,000 miles. Which now means based on their guidelines I need to look at a budget for a vehicle I did not have. During the process of researching what vehicles can become wheelchair accessible, one of the vendors mentioned DDA will not cover that large of an amount for a conversion and I would be lucky to get $11,000.00 - $12,000.00. That took me by surprise as this process was new to me, but I did confirm that information with the caseworker. She said it was an all or nothing coverage. So now I need to go back to my research board and find a cheaper solution.

Luckily Olivia’s therapist was able to get her a “special needs” car seat. The only caveat to this was that you can either get it to swivel or recline but we needed both. We chose recline to help combat the severe hypotonia Olivia battles, but now we need to find a vehicle that a swivel seat could be installed in since that option would fall into DDA’s budget. Again, back to the drawing board and list of vendors for help. The vehicle we needed had finally been narrowed down and I notified the caseworker it was being purchased so she can submit the paperwork for them to cover the swivel seat. Oh yeah, I forgot to mention, I had to get medical letters of necessity from multiple providers and some records to back up our claim to submit (hence the paperwork).

DENIED!! About a week later the caseworker calls to let me know it was denied by DDA. Excuse me, what?!?! Reason being, “client does not differ from the majority.” After swallowing the initial lump in my throat, I asked for the committee’s information so I could dispute the decision, because my daughter clearly differs from the majority. I began gathering all information and documentation needed along with all of Olivia’s providers to back us up. There was no way they could deny it this time. Wrong again! DENIED!! They changed the reason this time. It was because they felt her insurance needs to cover it and if it was denied then to come back and try again. At this point I wanted to scream. Every day I was in a bad mood trying to solve this because the vehicle was already purchased, and the car seat already ordered. It took precious time away from my family that I can’t get back. This was now overflowing into my home life. After venting to other moms who have been through similar struggles, they all had 1 thing in common to say. That was that DDA was trained to deny all first attempts because parents don’t typically fight back. I decided to try one more time. I did as I was told and attempted through insurance. Long story short, this was never something they had or will cover. I received a denial and took that back to DDA with a hopeful heart. The caseworker sent this off and you guessed it, denied again. They said I now need to appeal through insurance for that “extra denial,” then I could come back to them and try again.

Why am I telling you this boring story? To stress the importance of awareness. At this point, I threw up my hands up and said, “I’m done!” It’s been an 11-month process that had me running in circles. My family needs me, especially Olivia. It’s true, I still believe it was wrong what they did and continue to do to other families in need. They market to families all the help they can provide; then make you jump through hoops to get the bare minimum. You got it wrong this time DDA, but I choose my sanity at this point. I did all I could, right?

Next time you question yourself after jumping through hoops and trying to climb out of a hole on your own, know that you’re a badass parent who has done the most. It is the system that is broken, not the people. Next time you read a request for help on Facebook, be aware that the person may have already jumped through hoops and back before gaining the courage to post publicly. A link to another organization may not be the answer unless they’re specifically asking for that. One way or another my daughter will get what she needs. Our family are masters at rearranging paths for a higher need and we will do just that.

Birthday Blessings

 

Today I should’ve woke up to my first day back in Washington with sun-kissed tan skin and an airplane hangover. Instead, I am writing this blog. I intended to write a blog about our fabulous Hawaii trip and what it meant to us, but once again I am reminded of how much control I really don’t have over life. You would think by now I’ve mastered this, but I am undoubtedly still beginning stages.

Before kids, Daniel and I would travel every 6 months and we were determined to keep that streak going once we had kids. Well, then we had Olivia and covid stopped the world shortly after. Daniel always mentioned his desire to bring Olivia to Hawaii, but my fear mixed with her high-risk health prevented that. So, I would say, “yes, one of these days.” Knowing exactly that I meant, “yes, maybe way into the future once her health has proven stable and I no longer have anything to worry about.” I did my best to keep her sheltered from covid but unfortunately it found its way into our home.

Once Olivia was on life support from a covid that went septic, my train of thought began to shift. Each time the providers would call with updates or stress how critically ill she was, I couldn’t help but think of all the things we never did with her. No one could assure me we would ever get a second chance to take her to Hawaii or show her Snoqualmie Falls like all the other kids. I promised myself, if she makes it through this god-awful sickness, we will live out every day as if it were her last. I won’t wait anymore, I will make Hawaii happen for her and her dad, I will make certain she site sees like all the other kids. We will make all her wishes come true. The months following her recovery, I began planning our Hawaii trip. I knew Maui would be the perfect slow-paced island we needed just in time for the girl’s birthdays. I reached out to the doctors to guarantee we had all the equipment and medical documentation we needed to fly. We were ready! Shortly after, I applied for Make-A-Wish and Olivia was granted a wish come true.

Everything was falling into place just as I planned. Hawaii was now 3 weeks away and I could hear the ocean waves meeting the shore, I could feel the light airy breeze, I could smell the sweet food. I needed this trip to happen, hell we deserved it! Then I received a text from my mom that morning stating there was a fire in Maui. Instantly I thought it was exaggerated, so I decided to research it myself. I saw not just 1 building on fire, I saw people’s homes being destroyed and years of history being burned to ashes. I’m not going to lie; my first thoughts were selfish. I was upset that this trip was slipping through my fingers. I thought, why us?? Even during the fires, I was still trying to find a way to make it happen. It didn’t take long for me to vent to a family member who quickly checked me. I mentioned to her how I needed this trip and how it sucks we can’t go. She responded with how scary and sad that this was happening to people. Yes, the meaning behind this trip meant the world to us but how could I be so blinded to the fact that people were literally losing their loved ones and everything they had. It took a few days for that to sit with me and shift my perspective. I initially felt like I had made empty promises; like I was failing somehow. But I remembered, this isn’t about me. It’s so much larger than that, it’s about those in Maui desperately needing help. It’s about Olivia witnessing how her mom reacts to situations and handles disappointment. I soon cancelled our trip, thanked God for keeping my babies protected from the Maui fires, and leaned into how I could help those affected. I don’t know why something as bizarre as this happened, but I do know we are safe in our home tonight while others are not. So, we will plan for next year and continue to trust that God has our best interests at heart. We might not have been in Maui, but we did get to see the Snoqualmie waterfall, eat some good food, and have a birthday luau with some pretty amazing people.

Enjoy our Luau Pics :)

Birthday Girls Sleeping While The Party Starts

Catered By Casa Luz Catering

Party Festivities

Decor Made With Love

Live Island Reggae 

Happy Birthday Mis Amores :)

Luau Success

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!