It's hard for me to share things some days, especially when there has been an overwhelming abundance of love, kindness and support and help sent our way. It's crazy to say that because usually kindness and help make things better, but it causes an emotional overload that tends to stunt us for a little while until we can get our circuit boards up and running again. It also is hard when Kaylee is showing some regressions or decline, to keep people up-to-date, because honestly, I don't even want to talk about it. At first, I feel that I want to retreat, then I want to lash out, then I want a meltdown and if I write any of that it comes out as a big hot mess instead of an update on our sweet little warrior. You don't find a lot of posts/blogs about the caregiver's or the mom's or the dad's meltdowns when they're going through stuff like this. I've searched; I've tried- I see some people talk about it but there's never really any big huge talk about meltdowns. If you do find some rare posts about meltdowns there's usually the wonderful comments about how you need to keep your chin up and stay strong and be there for your kid and pick yourself up by the bootstraps etc., etc.(This in no way is referenced to any comments toward our family, just my observations while reading other blogs). But that makes it hard to talk about things in real life, so then you make posts trying to share the positivity and people think that things are getting better when in reality there isn't any better there's just a shift of your frame of mind.
So, Saturday the 7th of November I had a dear friend help me put on a yard sale to raise money for Kaylee and people donated stuff for us to sell and came by and gave Taylor money for her pet rocks and gave us donations and it was amazing. Then on Saturday November 14th the same sweet friend set up a work day at our house and we had so many volunteers come and help us get our yard ready for Kaylee's potential Make-a-Wish which is going to be a playground type of structure. It was so incredibly overwhelming and wonderful to have so many people care about us, come out and help us, get sunburned for us, get sweaty, lift, do hard manual labor. It was just utterly amazing. We also, in that time, have had quite a few friends send us meals, send us gift cards for food. That has been such a godsend I can't even begin to express my thanks. And what comes from that all that overwhelming outpouring of love for our family, other than the gratitude? An inability to express my feelings. It comes with an unexplainable post on how things are with Kaylee. It comes with fragmented sentences when people ask how things are. It comes with stuttering and stammering when somebody asks what else we need. So here is my update for everyone. We are doing great. We are doing horrible. Kaylee is making progress. Kaylee is declining so fast it makes my head spin. Kaylee is fighting this hard. I'm also losing my baby as we speak. Our family is healthy. Our hearts and bodies are not healthy- they are over-exhausted, over-emotional, over-worked. We do not need anything at this time other than prayers and donations to the foundation researching a cure for this disease. We need all the help in the world because some days we just can't cope. We are so blessed to have the weekly help we do from my parents. I wish my parents didn’t have to give up their independence and golden years to help take care of Kaylee (probably more take care of me because even tho they don’t often say it, I know they are extremely worried about me and my health).
So, there it is folks- raw, emotional, and up and down. We definitely (if it weren't for this virus) need loving arms with warm hugs wrapped around us AND prayers. Prayers for a miracle, prayers for our other two children who struggle with this reality, prayers we all stay strong and healthy, prayers for the researchers that they get enough financing to find a cure or medication sooner than later, prayers for the kids' grandparents who selflessly give of their time, prayers for all the relatives and friends who continue to give their support, prayers that everyone knows how truly grateful we are, and prayers that my husband and I stay strong to weather this raging storm because sometimes our boat seems so small.
We believe God did not give us this disease to make us stronger - God is not cruel - in fact, God cries with us as our innocent child goes through this struggle. God will strengthen and keep us for the entire journey. God loves us. God loves Kaylee. And most important, we are so very blessed!
I read an article recently about how lonely life is as a special needs mother. It truly struck me that I still don't refer to myself as a special needs mother. I think this title has been harder to come to terms with then Kaylee's diagnosis in February. It's a hard concept to go from thinking you are going to find an answer to what is ailing your child and be able to fix it....to where we are and there is no cure, there isn't much known about this disease and there is little help because we are also in the middle of a worldwide pandemic. So, life as a newly special needs mom in the midst of pandemic life has truly become so very lonely. As my oldest child says, "all we need is FAITH, TRUST and PIXIE DUST". And with that I know that we will get through this by finding the little snippets of happiness in life. We will get through this by our faith in God. We will get through this because Kaylee is an amazing fighter with a spirit that defies this disease, and she deserves the best fight from her family and loved ones by her side.
We are the Bland family. Well, truth be told the "not so bland" family. Our life has become anything but plain or normal in the last few years. This is our page to help gain support and spread awareness of the extremely rare disease that our middle child was diagnosed with in February of 2020. I am hoping by sharing what our family is going through that we can bring awareness to an extremely rare disease. We also hope to give support to other families as they try to navigate a new normal after a devastating diagnosis.