"I Don't Know How You Do It"

If I had a dollar for every time I heard this, I would not have to worry about my rare kiddos financial future!! I hear it about the research I do, the patience I have, the job I gave up, the life I currently live, and many of the choices my husband and I have made for what we hope is the benefit of our rare child. Let me tell you how I do it - a lot has to do with my faith and the support I have, but the truth is you do it for the love of your child or whoever it is that you are taking care of. I do it because, if I don't who will? And I do it because of the unconditional love I have for my child. And that is why you would too...

When a couple is expecting a baby they never saying they are hoping for a baby with a rare and chronic illness, the hope is always a "happy, healthy baby". And that was ours too, of course. But that was not the path God chose for us. When I wanted to be a mom, I wanted to be the best mom I could be for my kids, I did not qualify that statement by saying as long as they are..... God gave me the children that He knew He could lead me to care for, that He had equipped me to be the mom of. Does it some times take strength beyond what I have yes, but God gives all Christians different life circumstances that are beyond what we can handle so that we lean in to Him. There is no truth to the statement - "God will only give you what you can handle."

My life looks a lot different than what my 30 year old self thought it would be. When I was 30 I had just "temporarily" left the workforce and found out we were expecting our second baby. I had left my job because of the health of our firstborn. My job had meant a lot to me, looking back - my job had been my god back then. I loved my husband and my son, but my world and my self-worth was based on my work and what the people I worked with thought of me. When I left that job it was heartbreaking, but God knew that he was breaking my heart to bring my life back to Him. People did not know how we would make it on one income with a new house and now two under two years old. It was not easy financially, but our choice was to do what was best for our son's health and cut back on expenses or keep living the life we were. We found where we could pinch and save and we did. When I look at the choices - who would have chosen any differently, if they had a choice? That is how we did it.

As medical issues became complicated for both of our boys, the wonderful doctors we had for them had few answers and those answers seldom worked. We were referred to specialists and still the road was not clear and our boys were suffering. Was I to just let them suffer or to jump in and learn all I can? To advocate for answers and professionals to help us, or just sit back and see if they would grow out of it? We had one child fighting to breath and one fight to not pass out when standing - when people say - "I don't know how you do it" - I wasn't given a choice.

By the time we got answers for both boys they were in their teens and that was when we had already decided (prior to having kids) it was best to have someone at home when they came home from school. Our son with Addison's Disease took a long time to really recover from how sick he was and there were many mental health challenges along the way. Was I just supposed to make him tough it out? In reality his life had already been "toughing it out" to stay alive. Again I was not really given a choice...I had to have compassion for all he had been through and was going through, as I was the only one in his life who has the flexibility to be there as he needed me. By high school, he could no longer be in public school and I had to home school him through the end of his high school career. He literally could not get up early enough and maintain the rigor of a high school day/curriculum. Again, How did I do it? I poured myself into what I would need to do to get him through because it was that or he would drop out of high school and I was not sure where his life would go if he went that direction.

After homeschooling was complete, my husband and I felt he still needed just a fresh start. Covid had made my husband's workplace flexible enough that he could work from anywhere and we wanted to retire in 10+ years somewhere warmer than we were. We decided to pick and move to give him the fresh start he needed. And now he will be starting community college in fall. This was never on his radar - homeschooling his senior year was about life-skills because he said once he was done with high school he would never go back to school. I realize not everyone can pick up and move across the country to give their child a fresh start - but tell me you would not do whatever you could do for your child.

When people say "I don't know how you do it" I give an answer of - I wasn't really given a choice, but I have God by my side every step of the way. We are doing our best to prepare our son for the world without living under our roof. His path looks different from most, I know this, but my path was not what I thought it would be 20 years ago and I am doing alright and I know that he will to. And one day he will share his unbelievable story to which people with respond with - "I don't know how you do it."