I have always been a bit timid when it comes to asking for what I want. I am a major people pleaser and hate to inconvenience others. Asking for something usually goes kind of like this, “could you maybe, possibly, if it’s not too much trouble, please…” And that is only if I get the nerve to ask. This really doesn’t come from a place of kindness, more from a fear of what others will think about me. I don’t want someone to think I am too demanding or unreasonable. Then Katie was born.
When you become a parent you quickly learn that it is your job to demand what’s best for your child. And when you have an 11 year old who can’t talk you better be good at it. My husband and I are her voices. We have to advocate for her. But what does that mean? It means A LOT!
It means we have to know everything about IEP’s and how to make sure her goals and benchmarks challenge her while also allowing for success. We have to research medical procedures and know every possible risk and benefit to make sure what the doctor recommends is best. We have to know about AFO’s and hamstring lengthening surgeries to ensure she keeps walking with assistance. We have to know the latest and greatest assistive technology on the market. We have to know all about wheelchairs and walkers and so much more. And when we know it “all”, we have to demand that Katie gets the very best of it.
We are so tremendously blessed with a team that loves and cares for Katie. A teacher who goes above and beyond to help her achieve her goals. A classroom nurse who takes the time to do everything exactly the way mommy does. Aides who love her like she is their own. A team of therapists like no other, the kind that stay up late at night when they can’t figure out the puzzle of Katie. A family that researches as much as we do so they know how to care for her and make sure she has the best. And friends who are always there with an ear to listen, a shoulder to cry on and a night out when we need to escape.
It really wasn’t until recent years that I truly learned how to stand up for Katie’s needs. God gave me a precious friend who was born fighting for what is right. She knows what her special needs daughter needs and will not stop until she gets it. I truly think she is changing the world of special needs. She changed my life by encouraging me to do the same. It’s not just about being assertive, it is about educating myself so I can confidently say, “this is what Katie needs and this is why.”
In this growth of learning how to speak up for Katie I have also learned to speak up for my Lord. A few years ago, I was all too comfortable just leaving my faith out of most conversations. And if someone questioned my religion I was quick to change the subject. That was because I didn’t know the answers. Now after several years of immersing myself in the Bible and my Catholic faith I am quick to shout it from the mountain top.
“Go therefore, and make disciples of all nations, baptizing them in the name of the Father, and of the Son, and of the Holy Spirit, teaching them to observe all that I have commanded you. And behold, I am with you always, until the end of the age.” Matthew 28:19-20
That’s a demand from God. He doesn’t say talk about me only in front of your church friends, be careful not to offend anyone who doesn’t believe in me. No, he says be ready to die for me.
“Then they will hand you over to persecution, and they will kill you. You will be hated by all nations because of my name.” Matthew 24:9
Every apostle, except John was martyred for their love for God. Would I die for Jesus like He died for me? I truly hope so. But thankfully in America right now I don’t have to worry about that, but so many people around the world do, right now. Here at home the very least I can do is learn much and share.
It’s easy to sit back and cruise through life never making waves, but we were meant to get out of the boat and stir the water. I believe this can be done peacefully if we ask for God’s guidance. It’s not about being right or making judgments when our beliefs differ. It’s about opening up those lines of communication and sharing something new, while being open to learning from others.
There is so much division in our world today when it comes to God. There are a million different religions with a million different interpretations of the Bible. And when we talk about God sometimes our egos get in the way. We want our beliefs to be right and we want to make sure others see it our way. Being Catholic I sometimes encounter those who think I am wrong for what I believe and that’s ok. But now that I know more I will kindly explain why I believe what I do. Why I pray the rosary, why I go to confession, why I Baptized my babies, and why I believe that the Eucharist is the true body and blood of Jesus Christ. That does not mean that everyone has to believe it, but I should be able to engage in a discussion about God without being defensive. I think these discussions lead to so much growth.
Our voices are powerful. I can silence mine and allow things to just be, or I can use it for God’s glory. I want to challenge you as well as myself to go deeper in our faith to learn why we believe every single thing we believe. God uses us to spread His word and in order to do that we must learn. Just as Katie needs an advocate so does the Lord. Someone to be His voice and spread His word to the world.
“Therefore, my beloved brothers, be firm, steadfast, always fully devoted to the work of the Lord, knowing that in the Lord your labor is not in vain.” 1 Corinthians 15:58