How do you do it?

 

 

Simple answer, day by day. If past me knew what obstacles future me would face, I would’ve said there’s no route to survival. I guess God knew what he was doing when he wouldn’t let me see the future. The beginning of 2025, I scrolled across a crossword puzzle from another medical mom on Instagram. She wrote, “the first 3 words you find will be how your year goes.” I found purpose, miracles, breakthrough in that order. I decided to manifest this for our life. As a child, I was known for stubborn believing. For example, I was at a Benny Hinn event for my birthday with hundreds of other people. I turned to my mom and told her; I am going to get a picture with him. I found a security guard, told him it’s my birthday, and that I would like a picture with Benny Hinn. Not long after, I was called up on stage by Benny Hinn for a picture. Looking back now, I was manifesting as a child. As l gained life experiences, some good, some bad, somewhere along the way I lost that. This was the year I was determined to gain it back.

Medical life can easily overwhelm a human being and it’s so important to not let it break you down. Sometimes it’s your mental health that gets you through a really tough situation. I have been blessed with a family and friend support system. I have a mother and brother who signed themselves up to be certified state caregivers to help care for my daughter. There is a page of inspiring quotes taped in my bathroom. But when that’s not enough and the weight of her health crisis is weighing me down, I reach out to diagnosis specific support groups. Reading firsthand how other families navigate similar circumstances is immensely beneficial for those walking their first steps.

But I didn’t just happen upon these groups, and I didn’t wait for help to come my way. Early on in this journey, I had what I would consider a mental breakdown. I was aware I was mentally drowning, and I knew doing nothing was not a sustainable way to continue life. I was naturally born with a fierceness and that’s what I needed to pull myself up and out. I took it upon myself to sign up for mindfulness therapy not knowing if that was the answer. I gained countless tools through therapy and learned that this in conjunction with other healthy habits can help propel you forward and make life manageable again. The exhaustion of mixing together a 24hr feed for your child and her machine, administering multiple medications at different times, constant position changes, therapy, and doctor visits on a daily basis is out of this world. Through the exhaustion I would catch a glimpse of my daughter and tell her, “I would move heaven and earth for you.” But how can I promise that if I am not in a condition to do so? It is so easy to say my child is priority above all, but it is also necessary to care for myself so I can advocate for her.

It's no surprise the system is setup for medical families to fail. They make you fill out a book long application until your personal life and finances are naked and bare for them to discuss how they please. Then you may or may not be approved for pennies on the dollar. Mind you a simple google search will tell you the average price of a basic pediatric wheelchair is $4,000+, electric Hoyer lift to safely transport your child (not ceiling mounted) is $3,000, a medical bed is over $2,000. Why do I tell you this? Because no, insurance does not always cover everything, and you can’t save up for these items because then you are ineligible to qualify for further help. But this is not a dead-end street. If a group of people know how to find a way, make a way, or create a way, it’s medical parents. There is a secret underground mafia mom mob exchanging high-cost medical equipment and supplies. Okay, it’s not really an underground mob, but it is a group of individuals who morally believe not charging others who are in need is the route to go. It is out of the kindness of their heart to help others, as the world should be. When you find this group, don’t let them go! Don’t know where to look? Ask around and then ask some more. Keep going until you find it.

The days that life doesn’t feel manageable, is where my faith comes in. It looks different now than what it did before entering the special needs parent world. I couple the reality of my daughter’s diagnosis with the hope that miracles are still possible. When your child has one of the most severe forms of epilepsy that affect her day to day living, you start seeing little bits of her fading over time. I have to believe there’s hope, I have to manifest it. I started 2025 off strong believing her life has a purpose, a seizure-free miracle was coming, along with her breakthrough. I was in contact with the providers about her research study getting published and how the medication we’ve been waiting for was finally in a substance she could take. This was it! In August the provider shattered those once hopeful thoughts. We discovered that medication targeted a different pathway than what my daughter needed. There were no alternatives or next steps offered. It was back to the drawing board. I cried and prayed and cried and prayed some more. This was supposed to be her year, why didn’t it happen? Through my processing I realized my early 2025 manifestations weren’t directly about Olivia as much as it was for God. That his purpose for us is beyond anything we could imagine, he has worked miracles for Olivia and still can, and breakthrough is taking place by merging western medicine and faith. Maybe praying to God for strength to believe for a miracle isn’t your thing. Maybe it’s a higher power of some sort or the universe. Whatever it is for you, it is something you have to seek for yourself.

My character, my nature, is to give back. It helps refill my cup. Now that I am over 6 years into this, I can see the gaps that existed in the early years, and I can help to ensure other families don’t experience the same. Find what fills your cup and continuously fill it. Overfill it if you can so that there’s reserve on the days your soul is running empty.  I am good at advocating and even better at surviving. Maintaining my focus on day to day helps my mind from spiraling into the unknown future. My hope is while you read this, you were able to pick up some options to try out, and that you don’t have to seek and research every option, just know that help is on the way.

Bruno The Miracle Dog

 

The day is here it has finally come; the inevitable has arrived. My miracle dog Bruno of 13 years will make his debut over the rainbow. We get to do it our way and ensure a comforting yet healing departure. He’s not just a miracle dog. He has been my therapist through struggles, the protector of our family, the mediator during arguments, and so much more. Anyone who comes in contact with him can’t help but to love him. Take the most profound non-animal lover and place them around Bruno. Guaranteed they are leaving with a new heart for a dog like him. He wasn’t always that way though. Any dog owner will tell you; puppy stage is rough.

I can still remember when my sister sent me a CraigsList listing of puppies, she had no business sending me. She knew I didn’t want any pets as I had just received keys to a new apartment. She also knew I would click that link and do it despite what I said. What can I say? She was right. Once I clicked, an adorable picture of 3-day old boxer puppies popped open. I went on to read that they were located in Auburn, about 20 minutes from my apartment. The mom was a very large boxer rescue that happened to be pregnant. They were unsure of the father but did see a sighting of a border collie male nearby. I thought, “well I’ve already clicked the link, I might as well go see them and just look.” So, I called my sister and we drove down.

Upon arrival, we saw black and white long-haired female puppies on the apartment living room floor, and brindle short haired boys. I immediately gravitated towards two of the boys who looked fairly similar with similar temperaments. The only distinguishing mark that set these two apart from each other was a white mark around the nose. At that moment I knew I wasn’t going to be able to leave that apartment without first making sure that puppy with the white mark around his nose would be mine. I didn’t come ready with a deposit because remember? I was “just looking.” So, I asked my sister to help spot me some of the deposit since she was the reason I was there, and we made it happen. Mind you I was 21 years old at the time and had no grasp or comprehension on what type of long-term decision I was making. But I knew it was my decision to make and there were no return policies or dog pound drop offs in my eyes.

Seven more weeks went by before I finally went to officially pick him up with my mom and brother. I never researched the do’s and don’ts with puppies, so the first couple of nights he cried, I went and laid with him. That quickly became uncomfortable, so we moved to the bed. That soon became a habit for the both of us. The mom guilt struck almost immediately each time I had to leave for work, so I would give him free range of the apartment. You can imagine the destruction a puppy can do in just a few hours flat. I left that apartment with no deposit returned in addition to owing an additional $1,100.00 for baseboards, carpet, doors, and porch (yes, he chewed on the porch). I learned quickly what not to do after that, but also if he gets through that front door to outside, we are now playing a 30-minute game of tag.

Around 1 year of age was Bruno’s first miracle. I was walking him alongside Redondo Boardwalk with my now sister-in-law when he went to the crosswalk and was struck by a car. I watched his body slide from one end of the road to the other. In that split second, I thought for sure he was dead. I didn’t realize how many other people watched it happen as well. They soon all began to crowd around us to check if he was okay. Surprisingly, Bruno got up and walked over to me. The driver was extremely apologetic and we exchanged information. We quickly got him to the car, and I drove him to the emergency vet. They assessed him and explained how lucky he was that the only injuries he sustained was road rash. I counted my blessings that day and knew a miracle had just occurred. That same year I met my now husband. He couldn’t believe how well I treated what he would call a “bad dog.” But he couldn’t say anything because Bruno was mine. Another year past when he moved in and felt like it was time he finally put his foot down about the dog. Since Bruno’s shenanigans continued, he gave me the ultimatum; him or the dog… Well folks, I think we all know what decision I made. Nonetheless he stayed too and they grew to be best friends as Bruno matured into a well-behaved dog.

He was only a few years old when he received his first cancer diagnosis. We removed some small tumors and prayed for the best. I was aware cancer was prevalent in Boxers, but for now he was my walking miracle yet again. Eventually we bought our first home and during the searching process, he was with us in the car each time we went to look. He now had a fenced backyard and soon gained a Beagle sister we named Lucy. Life continued to evolve for our family and during our miscarriage and birth of our first daughter, Bruno remained caring in nature. He was never upset about the new additions, as long as he still got his butt rubs. Shortly after our first daughter was born, we made the decision to sell our home and move into something more fitting for our disabled daughter. The interim time was chaos. We had just moved into a temporary rental when I found out I was pregnant with our second daughter. The pregnancy was extremely tough for me and each day was survival. It was at this time when Bruno became extremely sick, and we were told he had a large cancerous mass in his chest that was inoperable. They gave him weeks to maybe 3 months if we were lucky for him to live. I made the hard call and scheduled for an in-home euthanasia. We cried and cried not wanting to let him go but knew it was out of our hands. As if life wasn’t hard enough, that same week my daughter had a prolonged seizure that needed rescuing and emergency services. I called 911 and we took a trip to the hospital. I can still remember on the way to the hospital, sharing with the paramedic that I had just found out I was pregnant, but also needed to put my dog down, and look for a house for my disabled daughter. Poor guy didn’t know what to say. But this incident was how Bruno was saved. We had to stay in-patient with our daughter and cancel Bruno’s death appointment. I told them over the phone that once we were discharged, I would call back to reschedule. Can you guess what happened? Once we got home, Bruno was completely fine as if nothing had ever happened. No more shaking or panting in pain. No more accidents around the house and he was eating again. So, I never called back.

That gave us 3 additional years. Three years to process and to know what’s coming. But also, three years to soak up each additional day with him. You could see as time went on that his body was slowing down on him. One thing the vet always told us, was that he had a strong heart. They believe that is what kept him going. They don’t know why the tumor never ruptured as they predicted, but we do know he’s lived through miracles before. Bruno has been with us through some tough times and also experienced some pretty great milestones too. Now it’s our turn to be there for him and let him know it’s okay to go. He doesn’t need to suffer for our family; we will be okay. His aura of love, ability to tune into your emotion, with a face that can speak volumes, that’s the type of connection he had with people. That’s Bruno’s legacy of love he is leaving behind.

7/29/2012 - 11/14/2025

 

Bleeding Black

 

The dark secrets of this special needs mom…

Parenting is strenuous, and all of us will face situations in life that feel like they will destroy us. My emotional health has suffered blows, my physical health took a back seat, and my spiritual snow globe life was shaken upside down. People love to feel good and hate to sit with the “bad.” They love to hear how your disabled kid has changed you for the better or made the world a better place. But once you gain the courage to share vulnerable thoughts, you’re scolded for not being thankful. Then these thoughts go back into your little black secret box to never be shared again. Well, I’m telling you, you are not alone. This may not be you, and I appreciate you for not judging in some of my lowest moments. Wherever you sit, I can only hope you are determined to finish this read.

I started running more this year and each time I make it up the hill, I am met with a beautiful mountain scenery. In my head I could hear, “what if I just keep going, keep running towards the mountain. Don’t go back home and live in this free feeling that never wants to end. What could my family’s life look like without me?”

I went into this new role as a special needs mom 6 years ago with good intentions. What I did not anticipate is the amount of mental power it requires to construct a creative softer way to inform others of what our daily struggles entail. It’s important to me to unveil my truest feelings for connection, while simultaneously sharing for awareness and change. If all someone sees on my social media are joyful moments for the week, then that is true. We recognize joy in the midst of storms. I am mindful of inspirational porn though, and not objectifying my daughter to non-disabled people to feel inspired because of her life circumstance. There is absolutely nothing wrong with appreciating positive statistics, such as:

Olivia had an up to 20% chance of not surviving her first week of life due to the severe HIE diagnosis. She is now currently 6yrs old.

Olivia had a less than 40% survival rate on ECMO in July of 2022.

There was an 8-10% risk of Olivia having a stroke on ECMO. That was not her case, and the entire process was in her favor.

When it becomes offensive is when disabled people are reduced to an object of inspiration, rather than a human being merely living. She was not set here on Earth to inspire or teach anyone anything. She is not the gateway between Heaven and Earth. Her existence is simply enough, and she is simply enough. If all someone recognizes on my social media for the week are hardships, then that is true too. Hardships can shine while having a grateful heart. There are many odds that my daughter has not defied. That also does not define who she is or her purpose. We truly hope she does not become just another number as the life expectancy for individuals with LGS is approximately 5%, with an overall mortality rate of about 24 times higher than the general population. There are great STATS, and then there’s STATS you wish you never heard of when living with a disabled and rare child. Those are things we have to sit with on a daily basis.

I’m more than aware that not everyone will understand and some choose not to understand. I know no one will love my daughter how I love her. But that will never stop this special needs mamas heart from yearning, begging, and pleading for understanding and change in this world that was not made for disabled families like mine. This life will create jagged edges and weariness to the point of your soul bleeding black. They say it’s not for the weak or faint hearted, but there’s no other option but to put one step in front of the other in a forward motion. These concepts deserve to be brought to light and our fears and feelings validated. Change starts with us and snowballs into a ripple effect. Can I count on you?

The Caregiving Grandma

This beautifully written piece is from my mother. To gain her perspective, is to gain knowledge on the family compassion side of things. I only know what I experience, so to hear the same story in another form is eye opening. Hopefully it will be just as compelling for you...

The moment my granddaughter, Olivia, was born in September of 2019, after nearly 40 hours of labor, we were awestruck as this beautiful little one took her ‘ol sweet time entering this world. There were no typical cries to announce her arrival as she was placed in my daughter’s welcoming arms. Instead, my granddaughter lay there weak without a sound, with very little movement. Upon the routine examination, the nurse would raise her arms, but they continued to fall limp to her sides, exhibiting very little strength. Not long afterwards, the medical staff made the decision to have her examined by the NICU team, however she was returned to the birthing room shortly thereafter, with what seemed to be a clean bill of health. 

The following day when family came to welcome this new little baby, she was then taken for labs where a NICU nurse passing by, had noticed the discoloration in Olivia’s lips and recommended she be given oxygen immediately. Sadly, Olivia spent the first month of her life in the NICU. This was only the beginning of what would eventually be a series of events that led to her current state of disability. It is speculated, while in the womb, that she suffered a severe HIE event (Hypoxic Ischemic Encephalopathy). The short version? A lack of oxygen which resulted in a lack of blood flow to her brain, subsequently leading to severe brain injury. In addition, they later learned that she also has a gene mutation which they believe is contributing to her seizure events, low muscle tone and global developmental delay. We would later learn, the chances of her talking, crawling and walking someday, were slim to none, just short of a miracle. 

Little did we know, how different life would look, now that my precious little granddaughter was considered a special needs child. The numerous trips to the ER during cold and flu season and the handful of anti-seizure meds, pale in comparison to the day Olivia ended up back at the hospital in the PICU department with COVID in mid-July of 2022. I will never forget watching this tiny 2-year-old as she fought for her life and every breath that followed, even with the help of a ventilator. The most difficult moment was when the doctor had to obtain a verbal consent from my daughter over the phone, to allow them to hook her child up to the ECMO machine (a form of life support) by surgically attaching sizable cannulas in her neck. The doctor made it clear, she had little chance of survival and without this, she would die. 

I listened as my daughter fell silent on the other end of the speaker phone. I knew then, tears must be falling as she made the most difficult decision of her life. Bravely, she consented and asked that even though she too was fighting COVID herself, if they would make an exception for her to see Olivia one last time, since there was no guarantee she would survive, even with the use of ECMO. The hospital graciously agreed.

I was allowed to remain in the room as they prepped my fragile little granddaughter’s body for surgery and then ushered into another room down the hall that was empty, where the “aloneness” surrounded my very being. The words of the doctor echoing in my head and the realization of how circumstances can quickly change, finally hit me. After the sudden reality that I could lose my granddaughter forever, I found myself crying out to God, begging for her life to be spared. 

When my daughter arrived at the hospital at 3am, the memory and the pain of watching helplessly, while she stood speechless in front of her tiny child and witnessing for the first time, all the numerous tubes coming in and out of Olivia’s lifeless body, will never be forgotten, The month that my granddaughter spent in the hospital felt like eternity as we all watched and waited for a miracle, realizing we had little else to cling to. In mid-August, Olivia made a miraculous full recovery and was released to come home. Such an unexpected yet joyous moment for all of us. 

In the 2 years following her recovery, my daughter and I had many discussions regarding the possibility of me leaving my job and becoming Olivia’s caregiver. The choice was not a difficult one as it broke my heart to see the countless sacrifices she made along the way, on her daughter’s behalf. The sleepless nights and the numerous trips to the hospital ER that sometimes turned into NICU stays, became her new normal. What troubled me the most, were the deep dark circle under her eyes that became increasingly evident of a life deprived of adequate rest. It was clear she needed some help. 

In mid-May of 2024, I made the decision to transition from my job of 18 years at Valley Medical Center to being my granddaughter’s caregiver. I realized that it’s not enough to see a need, you have to be willing to meet the need. My only regret? That I waited so long. 

As the question is posed, what motivates me to be a caregiver? Just knowing I have the opportunity to not only make a positive difference in my granddaughter’s life but also help lift the tremendous burden of responsibility from my daughter’s shoulders, is just the start to what motivates me. The choice to take on the role of caregiver was not a difficult one, given the circumstances that led us to where we are now. Olivia’s life story, coupled with the numerous opportunities to show unconditional love, compassion and patience in assisting her with her needs, are just a few reasons where my motivation comes from.

Over the past 8 months, I not only learned how serious and important this role is, but I am growing every day as an individual, through each unique experience with Olivia. I am truly grateful for each moment I get with her and seeing her light up as my daughter sings to her, “You Are My Sunshine”, makes my day. I find myself seizing every opportunity to remind her of how much she is loved and although her verbal skills have not yet allowed her to say “I love you” back, her beautiful smile tells me everything. A long time ago, I stopped asking why unfortunate things happened to my precious granddaughter, and started asking, “How can I help?”