Hello friends. How have you been? Good, I hope. If we haven’t been in touch you might be wondering how we have been doing for the past four months that I have been mostly silent on here. Honestly, we’re doing pretty good. Our sweet Alan always has multiple issues to monitor and we definitely had a rough patch of one virus after in March and April, one that sent Alan to the ER and got him admitted for a few days (and we now have a Pulmonologist on his team to help monitor his breathing issues), but currently, we are in a stretch where his issues are manageable and he is generally doing well!!
I am beyond thankful for so many things lately. One of the biggest is the HUGE victory for our family that God has brought about through an organization called Every Child (https://everychildtexas.org/). I wrote in the last post that we were needing prayer concerning health insurance for Alan since we would be losing Medicaid in the near future due to Jim completing his training to become a Real Estate Appraiser (go Jim!) and we would be losing most of Alan’s private duty nursing care and who knows what else if we had to go on private insurance. It honestly looked like an insurmountable obstacle because the only way we could be sure that our family would get the resources it needed to care for Alan was to get him on a Medicaid Waiver program where he would be receiving Medicaid based on his diagnosis, not our family’s income, but the waiting list to even be considered for one of these programs is ridiculously long because Medicaid is so underfunded in Texas (basically the second worst in the country). The shortest waiting list was five years and the one for the really good program was fourteen years!!
I had talked with someone from Amerigroup, our Medicaid provider, about our situation, and she referred me to an organization called Texas Parent-to-Parent (https://www.txp2p.org/). I called them and told them about our situation, and they referred me to Elizabeth Tucker with Every Child. I ended up working with one of Elizabeth Tucker’s associates, Kelley Ham. During our first conversation she told me that she knew exactly what we needed to do to get Alan on a Medicaid Waiver program and that all I needed to do was do what she told me to do, one step at a time, and just keep her filled in on every step and she would walk me through it. Those words lifted such a huge weight off of my back! And she was true to her word and a true angel for our family and our dear Alan!
I began talking with Kelley Ham in March of 2019 and we were able to get Alan on the Home and Community-Based Services Medicaid Waiver program (“The Cadillac of Waivers” as I’m told) in June of 2019! Now we don’t have to worry about paying for Alan’s private-duty nursing care or any of his doctor appointments or medications for the rest of his life!! This is a true miracle and answer to prayer for our family. I could never say how thankful I am to God and to the wonderful people who work at Every Child for blessing our family beyond belief.
We currently have nurses in our house 6 out of 7 days a week and it is such a privilege. I get to watch over, cook for and care for Alan, but I don’t have to always be the one to care for him and do the many things that are needed for him every day. My nurses give me the freedom to just be a mom to Alan and to Dean and Henry. For example, I get to prepare lunch for Alan, Dean and Henry, and then the nurses feed Alan slowly and carefully through his G-tube (he has a lot of digestion issues, so much care is needed) while I actually get to just eat my lunch and then snuggle my Alan for a bit after lunch and then attend to household duties or helping Dean and Henry with something while the nurse does some stretching with Alan or puts him in his standing frame. It is such a relief to be freed up to have a more normal life and even get to go out every now and then on the nights where we have night nurses who attend to Alan’s needs during the evening and overnight as well. What a blessing!
To our nurses Diana, Menal and Jane I say, “God bless you and thank you!” To Kelley Ham and everyone at Every Child I say, “God bless you and thank you! Your organization is so very needed in this state!” And most of all, to God I say, “I am amazed at how You work Your wonders in my life and that You took what seemed hopeless and turned it into hope and a future that is bright! I am humbled and eternally grateful.” I know we will continue to have struggles and that things don’t always work out as well as they have for us in this situation, but I also know that God has promised to lead all of His children along, through all of the valleys and dark nights. His Presence and His Promises bring hope into even the darkest of nights, even if we don’t feel or sense it right away. He is at work. I’ve seen it, let me tell you!
There is so much more I could tell you, friend. Let me just say briefly that I have also been blown away by how much I have loved having these nurses in our home. I know for some it seems an imposition and that it’s hard to not just be alone as a family at times. I totally get that, but I also have to say, God has truly blessed me personally by getting to know these special, wonderful ladies.
For instance, our main nurse, Diana, is one of the most giving people I have ever met. She loves our little Alan more than I ever imagined a nurse would. And she is so passionate about giving him the absolute best care possible. She cares for his every need so painstakingly, she reads books to him and she spends a lot of time gently stretching him and helping him work on tummy time every day that she’s here (Wednesday through Saturday). I also love that we get along so well and have tons of conversations where we just share life together. We’ve even arranged it so that she can bring her son on Saturdays because he is close in age to Dean, and I watch over the three boys (she pays me a small fee, but less than she would have to pay for childcare otherwise) while she cares for Alan. It is such a win, win!! She is such an unexpected blessing!
I’m leaving out so many details and things I may get into in a future posts but today I just want to sing the praises! I also want to mention that I’ve decided I want to use this blog for updates on our family and Alan but also as a place to post some of my songs. Here’s a link: https://www.youtube.com/watch?v=a-SANX_yXgM I’m a bit nervous about trying this out, but I’ve felt led lately to just try finding an outlet for my songwriting hobby. I don’t have good audio equipment for doing this, so the sound quality isn’t going to be very good, but I think I’m going to just go ahead and start posting songs and maybe someday down the road I can re-do some of the songs if I get some better equipment.
I’m better on piano than guitar, but right now I don’t have a keyboard and it wouldn’t work to use our upright piano for these videos (my husband helps me record the videos after our kids go to bed and the piano is out in the living room so it would wake them up), so for now I’m going to start with songs that I can adequately do on guitar even though I’m pretty amateur. I’m hoping to purchase a keyboard eventually. I’m also starting to go out to a few open mic nights around Dallas and I’m hosting one of my own at Sucre Cafe in Plano on the last Tuesday of the month. I’m pretty excited about actually doing some fun music things again and I truly hope that God will use me in some way through this outlet.