I don't consider myself a caregiver, but dealing with illness when a child cannot care for themselves is not a light task. Some people are made for this because it is their hearts desire to serve and care for others in this capacity. Others suddenly find themselves in this place and then it becomes your hearts desire to do all you must to ensure your loved one is taken care of. This can be a very overwhelming space. Medication schedules, temperature checks, flushing lines, breathing treatments, dressing changes and so much more. You don't want to miss anything or do anything wrong. You feel like the RN without the 'R'. One 'R' in this case is Responsibility. Responsible for administering and managing Reya's care while she is with us. The greatest setback for Mireya would be to get sick and have any sort of infection that would cause her body to reject the progress of her bone marrow transplant. Isolation, hand washing, sanitizing, and doing any and everything to minimize exposure to bacteria. That in itself could take you to the land of OCD (Obsessive-Compulsive Disorder). Imagine layering that on top of what is already going on. Yes the Twilight Zone could seem very near.
The other side of all of this is the emotional side. It is a very draining process. I had a time recently where I just wanted to sift through all that has occurred and allow myself to just feel and express whatever I wanted. Suddenly your life is turned upside down and you now have a new set of priorities to adhere to. Life doesn't stop, nor does the demands of the other five people that need your love and attention. Yes I include myself in that number, because it's so easy to forget yourself in this process. The greater of our emotions over time has been thankfulness. Thankfulness for medical resources, miracles and a community of people, organizations and friends that have surrounded us with love and support beyond words. All these things have made our journey lighter. Love conquers all, and being immersed in the love God has for us through the actions and blessing from others makes it easy to keep pushing.
This has been a time of many emotions. When you are faced with caring for a loved one that is unable to care for themselves, especially one that is only four years old, it can be difficult. Isolation has been hard, but ensuring that Mireya's immune system is not further compromised, so in several months we can live, move and have our being freely is a small sacrifice in the grand scheme. We are working to protect one of our greatest gifts and it is absolutely worth it. It has been key for us to try to maintain a quality in life for Mireya that allows her a measure of control through something that is totally dictating how we live right now. Also allowing her sense of self to remain intact. Reminding her of just how special and beautiful she is. Placing little to no significance on hair. Hair is something you can 'choose' to cut when you want and guess what it grows back, and also reinforcing the fact that all the things she cannot do right now she will be able to enjoy again soon.
The 'R' for us has also been Revelation. I am amazed that something so rare could find its way to us, but God knew he had a 'ram in the bush' in Jalen and that as we submitted ourselves to him as our source for everything we needed, along with a world of people praying for us...that in the end it would be 'better' than alright. We know this is not the story for everyone, so we continue to pray for those in this same place or those living and existing in their own "Lord I'm depending on you" space. Remain hopeful and keep the faith, only God knows the end, so keep trusting him to see you through.
I'm so fortunate to have my husband and best friend beside me. The Lord has shown us that together we are a force to reckon with. You never imagine yourself here, dealing with a life threatening illness and all it entails, but in the midst of this we've learned how strong we are, how strong our faith in God is and how much he loves us. Marvin Sapp's "Never Would Have Made It" is like an anthem because it's only by the grace of God that we're at this place. You hate to say 'why me', but the even stronger expression of 'why not me' hasn't been my mantra either. I've simply talked to the Lord and told him that for whatever reason it is us and please just help us through this because we believe on the other side of this is a miracle and a blessing. In the Old Testament, they didn't just give their child a name because it was popular or sounded cute. Names had such significance back then. Never did we imagine when we gave our daughter her name Mireya (admired/miracle in Spanish) that she would be our 'living' Miracle. The simple fact that you wake up every day is a blessing. Life is too precious and it is not promised. We continue to speak life and thank God for her life.
John 10:10 The thief's purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.
“Words can never adequately convey the incredible impact of our attitudes toward life. The longer I live the more convinced I become that life is 10 percent what happens to us and 90 percent how we respond to it.” ~ Chuck Swindoll
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