LAUNCH DAY

 

This has been a long time coming, 1 year to be exact. My heart is jumping for joy because I understand how powerful this book can be. Not only is it a much-needed tool/resource for newly diagnosed HIE families but it also helps snip bit family's lives for the general public to see and understand. 

I remember how badly I was searching for something like this when Olivia was diagnosed. Every book I picked up and read just didn't seem to fit our case and now here it is. For me, it's comfort, it's support, it's encouragement, it's hope. I'm grateful to have my niece Payton's artwork piece apart of our story in the book and all the people involved who helped make this a reality. 

So here it is! You can snag a copy on Amazon for your Kindles or Paperback. Also available at Barnes & Noble in print and ebook. Thank you always for following our journey. Like I mentioned in our very first blog, Olivia will do amazing things!

Amazon Link Below:

HIElights of Hope: An Anthology of Stories From Families Who Have Been There: Bansal, Simran: 9780578292083: Amazon.com: Books

Barnes & Noble Link Below:

https://www.barnesandnoble.com/w/hielights-of-hope-simran-bansal/1141391277?ean=9798765560518

The Early Transition

 

I can’t help but laugh when reading the blog I posted in December 2021, right before a life whirlwind. It says, “Part of my healing is accepting life as it comes and I’m happy to move forward with this new chapter and see where life takes us.” Oh, if I only knew what was rolling in my way. It felt like the universe heard those words and immediately said challenge accepted and proceeded to send test after test. 

Let’s pick up right where we left off from the previous blog. We had just sold our home and found a rental right across the street. Like literally the neighborhood across the street. We had checked out a few townhomes, a couple houses nearby, and looked at apartments, but rentals were going quick and none of them seemed right. We were down to the wire and needed to move soon as closing on our home was coming. Then this home across the street popped up just in time. Not our dream place but suitable until we find the home we need for Olivia. 

Should be an easy move, right? Only if a snowstorm hadn’t hit us! We moved in 2 days and by “we” I mean my husband and whatever family he could find available last minute. Some of the family we had planned on asking had gotten Covid and the other half couldn’t make it due to inclement weather. The ones that did make it all slid down our poorly angled hill trying to find any bit of traction they could against the snow. They worked hard in the cold and were our true heroes of the day. Typically, my husband and I make a great power team for things like this, but this happened to be the day I had also FaceTime him to say, “I just found out I’m pregnant and can’t help move anymore!”

“I don’t want you to be strong, I need you to be authentic.”

 

As people evolve through life, trauma can also be a factor in changing and/or helping to shape people as well. My limited mind set never could’ve imagined I would become the woman I am today. As difficult as this life can be, I am so appreciative I have the chance to learn about awareness and inclusiveness. Before Olivia, those 2 words rarely crossed my mind. Most importantly, to me, true authenticity and genuineness have become powerful meanings in my life. Once again, my heart has shifted, and I’ve come to prefer someone genuinely authentic than someone strong. This wasn’t always the case, there were fixed times in life I needed a strong corner of people, such as receiving Olivia’s first diagnosis. Then there are set times I need to feel genuine care and see authenticity to confirm I am still human for this new chapter of healing in my life. I think at times we have a tendency to get caught up in “being strong for someone,” that we can fail to realize that maybe all that was needed is validation or confirmation of humanity. I am not saying one or the other is better, or that they can’t work simultaneously together, but for me personally there’s a season for what I need. Choosing to actively work on healing is not easy, often times it feels like I am fighting to continuously heal but it’s so worth it.

As I continue to heal, I am learning how much control I really don’t have in this life. The more I enlighten myself on taking things as they come, the more my anxiety and stress start to dissipate. Sometimes this comes easy and other times, like these last 4 months, it was forced from survival mode. My brain had officially been overwhelmed to the point of shutting down and needing to just let fate take its course. This realization was hard to accept but swimming downstream and no longer pushing back feels so freeing. But let me back up and share what really has happened to our family these last 4 months that pushed me towards that...........

The Castle on the Hill

 

Honestly, I didn’t want to move. I love our home, I love our neighbors, and we’re feet away from an elementary school. We have the most amazing views overlooking the valley with Mt. Rainer off to the right. I’ve always had to move from home to home, so I wanted this to be my forever home, I wanted too just be stable. But much like my daughter’s health, firm security is not always a guarantee.

We live in a beautiful community and gorgeous house. But I have to laugh, we have a 2-story home on a steep hill with a bunch of stairs and a disabled daughter. But why would God bless us with this home if he knew the child we would have? It doesn’t fit her needs in any way possible. One summer evening after a long walk with my family, my husband and I sat on the front porch and enjoyed the sunset as our bodies cooled down. We talked about reasons why we should or shouldn’t move and then it hit me. As I told him, “Maybe God was preparing us to be in a position to make a house for Olivia,” it felt like an epiphany. Suddenly that heavy feeling lifted, and it felt like this is what is supposed to be, so we’re going for it! 

Yes, it’s different from my plan but in a weird way I’m okay with it. You might think “way to go guys” or “that timing is a poor decision,” but either way there’s an inner-peace I can’t explain. If anything, I believe it would strengthen relationships with our neighbors because of the distance. It’s funny how we can spend every day for the last 5 years living only feet apart next to someone and still be at surface level. Knowing that our time is only but temporary here, it makes me want to stay in contact for the chance at a deeper connection with each one. Every now and again I'll question, "Are we making this move prematurely? What if we end up downgrading?" But in the same sense, what if we upgrade even more? It's easy to be afraid of a dream you haven't yet completed in your head, a dream so big you couldn't imagine coming true. As life has shown me, anything is possible, so I'm not afraid of this move. Part of my healing is accepting life as it comes and I’m happy to move forward with this new chapter and see where life takes us.

Dooms Day

Would you still think I’m strong if you knew how many times I waved the white flag in my head? Would you still think I’m inspiring if you knew how many times I cried today? We only depict the painting of our lives on social media that we want to share. We are all guilty of it and seem to quickly forget that there’s more behind the scenes. It’s that awareness and compassion we lack when judgement takes hold of us. I do my best to share the positive praise and the unpleasant ugly, but even that is only clips of our life.

My daughter was diagnosed with the most severe form and life-threatening epilepsy 5 days ago, Lennox-Gastaut syndrome. Man have I been going through it! With each deep breath out I can feel the pressure of stress directly under my eyes. I’m constantly having to rope my mind back in from spiraling into the unknown. I’m trying to sift through the sand of our situation for the beauty but my eyes can’t focus, my thoughts are too loud. I just keep hearing, “I can’t lose her,” over and over like a broken record inside. Parenthood has not been kind to us but I’m not giving up either.

I just want to hold her every minute of every day, smell that baby smell on the top of her head, kiss those little baby toes. To be aware of the small things is what makes me feel whole. Be aware of how your kiddo looks at you, or what new sounds their mouth is teaching them to make, or how big their foot grew today. Don’t let another parent tell you that you’re babying your kid too much. Love them and love them hard. It’s felt like a gut punch these last few days again but this time is different. We know we’ve been here before but we’ve also experienced miracles with her. I’m not going to lie, this chapter feels real hard right now, but we’re not going down without a fight. My husband and I will continue to network to find the best treatment options for her, we will continue to advocate for her, and most importantly we will continue to love her. With confidence, love, and care I can say our journey isn’t finished yet and I plan to write several more blogs about the ups, the downs, and the in-betweens of this thing I call life.

Healing Journey PT. 2

 

But why?

 

Someone fucked up. They fucked up and now left my daughter with severe brain damage to try and navigate through this complex world. But who is they? I was seen twice a week by the OB office; could it be them? One of the nurses did mention I had a “lazy baby” that always needed stimulation to move around on ultrasounds and fetile monitoring strips. I was induced and monitored the whole 40-hour labor stretch in the hospital. Towards the end, the OB did mention we would be looking at a C-section if I didn’t dilate further as time was now ticking since she broke my water. Is she “they?”

Or what if I’m wrong? What if there is a genetic mutation causing the brain disorder affecting the development and function of her brain? How would I feel then?

As a child I always asked, “but why?” My parents classic answer of, “because I said so,” was not sufficient enough for me. It’s funny because my husband today will complain of the same thing, me always needing an explanation for everything. But if I can understand the reasoning then I can get behind whatever “it” is 100%. The unfortunate reality is not all things are made to be known or understood, but they are to be supported such as my daughter’s health. For so long I felt incomplete not finding the medical facts to complete her case, and truthfully there’s a little bit of me that still wanders down that path. A dreary heavy-hearted path wanting to place blame so badly to hold someone responsible. But my God, could I really face the fact that I’m an option too?

Olivia’s case has been dismissed for the past 4 months now. Each month a little easier for my heart to heal. It was December of 2019, two months after her birth, when I wrote a letter to Valley Medical Center and went in search for a lawyer. The response from the hospital was expectedly cold and purely record based. It mentioned that everything was done according to standard and not their fault. Then lawyer after lawyer failed until finally my fifth one. He had hope for our case and hired experts to go through all the records. It felt like that “at last,” moment. We kept in contact over the months going back and forth on the case and eventually planned on waiting it out a few more months to see what played out from our specialists at Seattle Children’s Hospital. Then that dreaded brown box showed up. I knew it was full of rejection before my husband even opened it. Sitting right on top was the lawyer’s letter, right on top of all the paper records and discs they so neatly stacked together. It felt like bricks hitting my spirit again. It read that at this time the case just wasn’t strong enough. Since medical negligence is the costliest case in court, he needed a slam dunk case and this just had too many gray areas. I couldn’t be mad, I understood from a professional stand point the risks of taking on this case and going up against a well-known large hospital. But it didn’t stop me from feeling that familiar failure feeling all over again.

I specifically told my husband that this fifth lawyer would be my final try and that if it didn’t work out then I would drop the case. I needed to move on emotionally, I needed to heal. Well, once that accountability came into play you think I listened? Nope! I argued with him about why I couldn’t let it go. I had my hands gripped so tight around this ugly, wounding, sorrowful case for so long I wasn’t sure how to get let it go. You ever grip something so tight for so long that your hands feel stuck in that position? It physically hurts to let go regardless of you knowing that you need to. That’s how this process has been for me. With time and my own ways of healing I can start to slowly pry my fingers off one by one.

Two years in and we still don’t have answers of why this happened and now specialists are questioning the original documented birth injury. Legally as her parent I only have 3 years from the time of injury to bring a case to the courts in the state of Washington. As my countdown continues and time runs out, I’ve decided to back burner this case. I know at this point I have done all I can do and that in itself is success. This fierce mama is not giving up and if something happens to come up before the deadline then I will of course explore it at that time but my family needs me. My family needs all of me to be present. What your time is focused on is what will grow and I’ve decided to shift focus to Olivia’s treatment and future. The support you have shown my family and I is unexplainable. Whether this is the first blog you’ve read or if you’ve followed our family’s journey the past 2 years, we say “Thank you from the bottom of our hearts.” There were visions of Olivia’s supporters backing us in a court room that played through my head, and maybe one day that will happen, but I’ve also realized I already feel that same support now as I write this in my home. I hate not having answers but maybe that’s the hope I’m missing. Like my previous blog, “I don’t know,” mentions maybe the silver lining is in not knowing and blindly trusting. As acceptance grows so does my ability to adapt.

Happy 2nd Birthday Olivia!!

 She's our ray of sunshine reminding us how beautiful life is.

She has the ability to say, "I love you," without needing any words.

She is everything to us & us to her.

She is beautiful inside & out.

Cheers to 2 years old mi amor!