I would like to start off by saying how happy I am that we are past all the misunderstandings regarding a friend of mine’s post. Janet is a VERY sweet lady and is nothing but positive. I also want to say “thanks” for all of the poems, letters, e-mails, clothes (Randee), and prayers continuing to be sent our way. It is all of this sweetness, and good nature, that is helping us make it through all of the administrative and financial woes. Thanks!
As is usually the case, the left hand doen’t know what the right hand is doing when it comes to medicaid/ssi, etc. The costs keep racking up, and the paperwork keeps coming in. I am AMAZED that I am unable to get ANYONE to answer the phone at the Houston office for SSI. The phone rings until the phone company disconects it, and I do this for hours a day. I call other numbers (thanks to all of you who have sent them to me!), and they all tell me I have to call the number that no one answers. It is frustrating because all I am trying to do is clarify some items regarding Katy’s prescriptions. Oh well, wish me luck.
In the middle of all of the PT/OT, trying to get enough protein into Katy to prep her for prosthetics, media, family, administrative, bills, etc, Katy and I do things that keep smiles on our faces. One of the biggest is the dream of owning our own home. One day, it will be nice to have a place that is ours, and that we can modify for her needs, and for our family’s wants and needs. I know it will happen. Katy and I are both raring to get back to work, and miss working terribly, but will have to wait just a little longer. I have been talking to different organizations that might help Katy decide what she would like to do as she heals. I know that she still wants to help people, and she will be incredible at anything she chooses. If any of you have any knowledge of these things, please let me know.
Speaking of incredible…the Night at the Museum event is shaping up to be just that. We are still hoping to get a few celebrities and politicians at the event, so, if anyone reading knows anyone, please contact firstname.lastname@example.org. The event already has great performers, unbelievable auction items, and great food. It will be a nighht to remember, and it will be Katy’s coming out party! Katy will be there!! On a side note, I will be playing bass with one of the musical acts, as well. We hope to see as many of you there as we can. It would be a great opportunity to shake hands/hug you in person!
As we talk about events, I would like to mention one more thing. We would HATE, HATE, HATE for anyone to take advantage of all of your generosity. To make sure that doesn’t happen, we have created www.katyhayesfund.com. ANY event that we do will be listed here. We did that so that no one would use our situation to bilk others of money. Please check out the site as a means of keeping up with events that we are doing.
As for Katy-there is not much to report, other than she is wonderful! I have no idea how, after all of this, she can be so beautiful! We shared a heartwarming moment tonight as Arielle snuggled up with Katy, and then gave Katy’s nose the death grip. It was so cute to see Arieele and Katy laughing together as the baby held firm to Katy’s nose. We had a wonderfully delicious dinner (thanks Britt and family), and actually got to sit all 9 of us (5 of us, Katy’s mom, sister niece, and Chris) around the table for a meal. It is thought provoking how much that means now. Being self employed has always meant that Katy and I had to keep moving to keep getting paid. It, most often, led to an abnormal schedule for us both that, at times, didn’t allow us much time to see each other. This experience has brought us closer, and made us value the little thngs a whole lot more. I suggest, to anyone reading, that you take the time to put the world on hold and cirlce up the family at least once a day. We have always been a close family, but, since Katy’s illness, I know that all of us, including me, need these times where we all sit together.
There will always be people to thank while writing this blog, but three come to mind tonight. Megan, and the mother’s group from Dallas, kept me fed, and took the time to care about what was happening to another mother. Ylana, sweet Ylana, who turns out to be a friend of one of Katy’s friends, not only brought food, but kept us in Firefly and Sing Along Blogs to keep us smiling. Thank you! One more is Sarah, the band director from Pin Oak. Not only is Sarah how I ended up teaching at Pin Oak, and she somehow manages to keep me organized, but she has been a thoughtful, and constant, friend to my family in our time of need. I not only thank her, but congratulate her on the blessing of her pregnancy. She will be an AWESOME mom!
Love to all,