Faith, from the religious point of view was never a big part of my life as I was growing up. My family’s viewpoint was, that at one point I would choose my own religion and so the belief in a higher power wasn’t discussed. I was taught to have faith in myself. I always knew the next step, had a life plan and didn’t need to have faith because I thought it was all in my control.
Fast forward- a couple of years, and I meet the most divine 4-year-old boy who I never wanted to let go. Harvy was my, at the time, boyfriend’s son and over the years our relationship would have its ups and downs, but one thing I know for sure: he was brought into my life to teach me faith.
You see, we did not know it 12 years ago, but Harvy has a very rare disease. So rare, that it took us nearly two years to figure out what it was. Another year to learn about the only known treatment available for his condition and another whole year before we would finally be able to get the treatment for him.
I do not remember how it happened; what I researched; or how I managed to connect with the correct people who would help us set up this ridiculous logistical masterpiece. Much less, how we managed to get a job in a country that we had NEVER been to and were not planning on living in at any point.
It just happened that after my husband and I got married in 2011, we were offered a job in Mexico and we decided to take a leap of Faith. Our goal was to make enough money to get Harvy this Enzyme Replacement Therapy that helps to improve the quality of living for kids with his condition, MPS type VI. We were very naive in thinking that we could make the $12,000 weekly that it takes to cover the medication that he requires. We didn’t even consider all the other costs of medical bills, yes, we were VERY naive. We had a plan and we thought we were in control.
Well, we told our new employers about our sons’ condition and guess what happened? They informed us that there was medical insurance that would cover everything for Harvy. All we needed to do was get him to Mexico. This was not our plan, but it was set into motion before we even had a moment to blink and before we knew it Harvy and his sister were living with us and within 3 months he had his first ERT treatment. Life isn’t that perfect; this was somebodies plan and one of my earliest examples of faith as we thanked the Lord for aligning the stars for our family.
With a Special Needs child, no matter the rarity or severity of the disease, at one point the parents are reminded that it’s not in their control. Just thinking about the times when he is getting stuck with 5 different needles because nobody can find a vein. During times when you have to tell him, it is time to sit in this wheelchair because Daddy cannot carry him always and his legs are not working anymore. When you hold his hand before he is going into surgery and both really don’t know if you will see each other again. As a Special Needs Parent, you are NEVER in control…
But somebody is! God helps us open our eyes every day and fight to give our children a chance. He manages the lighthouse out across that vast ocean of loneliness, hopelessness and despair. He is a beacon of faith, because somehow, He will make it work.
Regretfully, I wasn’t the one that got us to the right place with the right insurance. I wasn’t the one that made it possible to move with two children, two animals and two adults to two different countries! We are not in charge of Harvy’s continuous improvement and his life saving treatment. We can only do our part, but somehow the right people, opportunities and situations magically appear. That is what gives me faith!
And I know, if you look closely back over your life – you will see your own examples of divine intervention. Cherish those and be grateful for them, have faith that there will always be a better day. I promise; there will be.
