I NEED HELP!!!

 Staring at the white wall from my bed, trying to focus on the texture, knowing that the slightest bit of movement will cause another vomit reaction. I quickly shift over to my other side once the nausea dies down just a tad to see my daughter Olivia staring right back. She is once again lying-in bed all day with me because I don’t have the strength to pick her up for a change of scenery. Each attempted time to stand up and walk to get her formula from the kitchen, feels like I am walking down a forever hallway exhausted at my wits end about to pass out. Pregnancy has always been tough for me, but this was a whole new intensified level. It finally came to a point where I needed to admit, “I NEED HELP!” I had to waive the white flag, accept that I couldn’t care for my daughter properly on my own, and reach out for help. I felt like shit at first doing that. I felt defeated and incapable. My first go-to person on my list of course was my husband, Daniel. Makes sense, right? He’s Olivia’s dad and lives with us, so logically why not?

He did his very best to help me and some. But slowly disagreements came creeping in. I wasn’t understanding that he not only is working full time but now coming home to care for a wife and a disabled child. And I don’t just mean emotionally. I mean like he was helping to bathe me, make dinner, and clean. It soon became too much for the both of us. We had to explore other options, we had to explore what help could look like in other forms or people. I reached out to family and thank God for them! My mother, brother, and mother-in-law would switch off every day in coming to help care for Olivia and myself. It was such a stress reliver once I finally let them in. Fast forward 6 months later and now my brother is Olivia’s official in home provider/caretaker licensed through the state. Watching their relationship blossom has been one of the many benefits I get to see on the sidelines. It wasn’t easy asking for help but if I knew it would lead to where we are now, man I would’ve asked a long time ago. Blindly trusting is one of the hardest things I continue to learn each and every day. The nausea phase is finally over, and I learned so much through it. We are now focused on the different ways help can look for our family. With another one on the way (IT’S A GIRL!) that need will only increase but we’re ready.

~Yesterday an Advocate, Today a Mother~

 

January 5^th, exactly 1 week after my positive pregnancy test, I was riding in the back of an ambulance again. My heart thumping, my eyes tearing, and a lump in my throat trying to hold back the emotion to prove to the paramedics that I got it together. Ten minutes prior, our little Olivia was just coming out of a 40-minute cluster of seizures in our living room. It was the first time ever we had to administer seizure rescue medication. I quickly called 911 as her dad carefully read the directions and did what was necessary at the 30-minute mark. Her body went limp as the firefighters assessed her and it was a no brainer that we would once again head to Children’s Hospital. I decided to engage in small talk with the paramedic on the way to the hospital to help keep my nerves calm. Repetitive thoughts kept circling in my head of, “stay calm you’re pregnant now, don’t get too emotional because you’ll lose the baby.” But then I saw the paramedic placing the IV, and then the nasal cannula for extra oxygen support, and at that moment I gave myself permission to just be a mom.

I needed to just love on my baby, be vulnerable with my husband, and care for myself. I freed myself from the responsibility of advocacy. Being an advocate for my daughter is a role I will always have but so will being her mother. While it’s great to teach others and bring awareness, quality time with my daughter and family are also great. So, this day I chose to be a mother and nothing else. Tomorrow I may step back into the advocacy world, who knows?  As a parent to a beautiful special needs kiddo we quickly become therapists, neurologists, nurses, etc. for our kids to survive. So much in that we forget we were parents first. It’s not bad to want them to have every opportunity possible to thrive in this world, that’s natural. But don’t forget that if all we did today was hug them, hold them, sing to them, that is more than enough too. Riding with my daughter in the back of an ambulance again while her father drove behind us was very triggering. But in that I was able to realign myself to what was important. We were hoping to never get to this point with Olivia’s seizures but were so glad to have such a quick, responsive, and caring paramedic team along with the firefighters. There isn’t always beauty in the ugly times, but this time there was.

Mommy's fighter

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.