What a great father’s day gift! Katy came home around lunch time, and is doing great! She has a few antibiotics to take, and a new set of wound care orders, but she is in great spirits. The frustrating thing is that we know the culprits that made her feel bad, but not the root causes. We still don’t have a good explanation for why she was so sympomatic while sitting up, and several other questions, but I think we have made some adjustments that should help to prevent a recurrence. We also have several follow up visits scheduled with the doctors to monitor all of Katy’s levels.
First, I would like to share some good news. A while back, as you may remember, Katy had an EF (Ejection Fracture) of 12. A normal woman should have an EF of 55. When we left Parkland it was at 31. The cardiologist did an ECG of Katy and found her to have an EF of 55! The meds she was on for her heart were not doing her good, and may have been harming her, due to her recovering MUCH quicker than anticipated. This helps to reinforce that her heart failure was secondary to her other conditions, and not the other way around. She is currently NOT taking any heart meds. YEAH!
I want to address something that has been on my mind the last few days. I want to talk briefly about what happened in te ICU the other night that caused me to put restrictions on visitors. A friend of ours was apparently (I didn’t see her until the last minute) waiting to see Katy. I had asked for all visitors to contact me to schedule appropriate times. The reasons for this were many. The primary two reason were that there may be procedures scheduled that change when we can, and cannot, see Katy (that happens regularly), and the other reason was so that family was alotted time first. One time, while Katy was in KMC the first time, I went to go in to the ICU and was stopped by staff. I was told that she already had her max number of visitors and that I had to wait. The hour came, and went, and then her friends came out. They said they were waiting for me to come in, and that, since I didn;t come back, they figured they could just stay. To top the experience off, I was told the doctor had already left and he had given all information to those that were there. This person showed up, unannounced, and then barged in on another of our friends’ time. She procedded to bombard Katy with questions, and, when I reminded her that she needed to please contact me in advance, ignored me to continue asking Katy questions. She proceeded to offer to take the kids, go by the house, etc, all while I am there. As the father of the family, I had already made all of the arrangements, and had relatives coming in to help. When I stated that she needed to talk to me about these things, she started yelling about wanting to make sure that Katy had a voice. I can assure that Katy has a voice, uses it, and I execute her wishes. However, while she is recovering in an ICU, with still undetermined causes, still in pain, and still unable to eat, that is a COMPLETELY inappropriate time to go to her for that information. Also, aside from the complete lack of respect for my role in the family, there was no consideration made for the fact that I already had 2 people rearrange their personal schedules to come help. That, and if anyone thinks that I don’t want Katy to be independant, they would be wrong. I will do whatever Katy needs, for however long she needs, but I would much rather that she could get her own drinks, scratch her own nose, answer the phone, change the TV channel, brush her own teeth, change her ostomy, etc. I’m sure she would agree.
It bothered me immensely that someone could be so insensitive during these difficult times, especially comeone claiming to want to “help.” I stewed over it for a while, and then (after talking to a few of our friends) came to what I hope is a reasonable conclusion. With the exception of those few people who read the blog, or we know, that have a seriously ill person in their life, most of the world has no idea of what it is really like. The only reason I am mentioning ANY of this is to prevent future occurences like the other night. I think, based on talking with several people, that most people think that, because Katy is home, that she is fine. I don’t think that they realise the level of daily care still needed, and, when they ask, we say that she is fine. She is fine. At least she is well on her way to being fine in the new definition of the word. She still requires a LOT of daily maintenence, and, due to reason of dignity, I do not share all of what is going on with her to the world. I think that, because of that, some people view that as her being secluded by me. Katy made mention of feeling couped up. I start getting phone calls immediately afterwards about why I’m not letting her go out. If they only knew. I spoke with Katy about this, and she was amazed that people would take her comment to mean that I was responsible for her feeling couped up. She was feeling that way because she wasn’t feeling well enough to leave the bed. She smile and laughed for the benefit of friends, she stil has her pride, but felt horrible inside.
The other thing that has happened is that many, many people call/write me with the SAME suggestions, and then the follow up, and then the 2nd follow up to their questions, regarding Katy seeing a psychologist, wound care, herbal remedies, etc. Once again, most of this is not being discussed openly because we would like to keep some things to ourselves for our own reasons. It is more difficult than one might think to write so openly about my wife, our kids, and our life. I focus on the positive, and I try not to let the dark thoughts see the light of day. I am aware of how many people read this, and I do not want to spread any more bad into the world. I have chosen, and Katy agress, to use my forum to spread information about this experience, and to try and stay as positive as possible while going through this. That being said, I know good and well that Katy needs a psychologist, what most of the alternative remedies are, and that so many people would love to come over and help. Unfortunately, the process for the psych doc is a long and twisted road compounded by the Medicaid system. Before anyone offers to help with Medicaid, you can’t. New rules put in place make it where it is difficult for me to do it, and they no longer allow 3rd party advocates. I spent 18 hours, in one week, on the phone with them. I am aware of what herbal remedies there (we are friends with a wonderful naturopath), and she knows that we cannot do much with them due to the meds Katy is taking. Lastly, though it is wonderfully sweet all the offers we receive to help, we are all a little overwhelmed, and more people doesn’t help that. Which leads me back to my original point. Katy and I LOVE, LOVE, LOVE to have visitors to Hotel Hayes, and love to see frinds while in the hospital – though we are hoping for no more hospital stays, but we must ask for understanding, and respecting, OUR wishes to schedule your times through me.
I also wanted to say “THANKS” to some people I haven’t thanked yet. I want to thank YOU. I don;t always get to reply to the comments made. In fact, I have over 1100 e-mails I am trying to return. I DO read all of the stories that are posted, and I am deeply touched by people’s willingness to share their own experiences with us. I think of all of you often, and I share your stories with others who may benefit from them. It means so much to me that so many have been willing to write to me, even once, to say how they felt about what Katy is going through. In all of my running around (physically and mentally) I sometimes for get to mention someone whose story touched me, but all of your shared life lessons have been received. Thank you for allowing us a view into your life as you read about ours.
I realize that I haven’t shared any stories about Katy in a while. It gets hard to think sometimes. I used to stay out all night, sleep for two hours, and then work all day…and that was in January! Lately, it seems I am running on empty at around 9:30pm. Here is a funny little happening from our stay at Parkland. Katy was haveing the issues with her lungs, but at this point the docs weren’t sure what it was. Katy was awake, and had kept her memory for about 3 days. She was aware of the amputations, and was cracking all kind of jokes! I do love her sense of humor. A new doctor came into to examine her, and you could tell he was a little unsure of how to talk with her. He introduced himself, and touched her on the shoulder. She says, “what, you’re not going to shake my hand?” Then she extended her bandaged arm. He did shake her “hand,” and he immediatley lightned up. It was hilarious. Another time, we were driving with a frind, and the friend was saying that he hoped that the fund raiser would allow us to buy a house. Katy said, “too bad houses cost an arm and a leg these days!” Then she busted out laughing! I am laughing while I type this. She cracks me up.
I will write more soon, and thansk for all of the comments!
Love to all,
Al
Hmmm . . . two arms and two legs = two houses?? Maybe a summer home!!
You don’t know me but I am so humbled by the effort you and Katy have invested in this very, very long journey. I hope you stay strong and on the right path. I think I mentioned before that you need to advocate for Katy when she’s getting worn out or exhausted. Her recovery is priority One and your well-being is priority TWO! Everything else will fall into place.
You are right as far as Medicaid is concerned – I’m not even sure you could get anywhere going through your Senator’s office. But it can’t hurt to try if you hit a brick wall. The worst that will happen is Medicaid tells the Senator’s aide to buzz off – or words to that effect.
Take care of yourselves and keep us posted when you can.
Karen
Al and Katy…
I am a stranger, touched by your story and have followed your blog for the past few months…you’ve continually amazed me with your love, courage and strength. Thank YOU for sharing your story and spreading a story of a couple staying strong for each other, even in the most trying of times. Keep in this together-putting each other first-that’s all that matters… You and your family-you have beautiful kids and a love story that will last a lifetime. You’ve made me and my husband and kids even more appreciative of what we have in each other. A priceless gift and we thank you….
May God continue to bless you all and watch over you…He IS with you all each and everyday. We’ll continue to pray for healing and lots of love…
Chris
Oh, and I almost forgot…Happy Father’s Day Al!!
Chris
I have followed your story for months and prayed often for you all. You and Katy are unbelievable. Stay strong and Happy Father’s Day to you.
I have been following Katy’s progress and your struggles for some time but not taken the time to comment, assuming you really don’t have the time to read the comments. But I have to say that I am amazed at your strength and envy Katy for having such a loving husband and family.
SOOO glad Katy is home! Happy Father’s Day!!
I can just picture Katy saying those funny things! Thanks for sharing. I know you’ll both get lots more rest at home.
Thanks for updating. We’ve been “sending love” and hoping she was home.
Love,
Laura
I’m so glad that Katy has retained her sense of humor. I thought that I might have a comment for her when I see her but wondered if she would appreciate it. Now I can tell you to tell her that I said, “Katy, I really never thought you NEEDED to lose weight!! As big as I am, I wish I had thought of it first!!!!” Much love, neighbors! HAPPY FATHER’S DAY, AL. I know we will meet someday.
I am glad to hear that Katy is doing better, and she continues to keep her spirits up ! Sometimes laughter is the best medicine and she seems to have a heart of gold ! I wish your family the best ! ❤ and prayers !
Loved the stories at the end of your blog!!! I just want to say God Bless you, Al. I hate that you have to spend your time explaining to people things like you had to in this blog but obviously it was necessary. Hopefully all will be better from here on out. Congrats to Katy for all she has accomplished in such a short period of time. 🙂
Hi, you don’t know me, but I somehow heard about your blog and I’ve been cheering you on from hundreds of miles away. We’ll never meet in person, but I am so impressed by how far you and your family have gone so far – and will go in the future.
Don’t bother writing to your Congressional representative for help with Medicaid. I tried that with my mother, and someone from the Congressman’s office called and explained they don’t get involved with Medicaid. I only got some help when I bypassed the local person I had been dealing with and contacted the state office directly. You have my deepest sympathy trying to negotiate that nightmare.
Al,
I’m glad to hear that Katy is back home. I hope she feels better soon.
Blessings,
Susan
Good Morning Hayes Family!
I usually read your blog everyday (Even though we haven’t met, I feel like we are friends after reading from the beginning), but had to catch up this morning after being out of town.
I’ve just been mulling over the incident that happened at the hospital with the person that barged into Katy’s room. There’s always one who doesn’t follow the rules & is really just thinking of themselves…made my hair stand on end! From this, you have new rules in place & so some good came from it.
I think of your beautiful family & pray for peace & comfort in your lives every day!
Have a wonderful week!
Katy & Al,
You have my utmost respect in your handling of what live has brought you! I so can see & hear Katy cracking jokes! We all need to laugh at ourselves once in a while! In the end you will have each other and the rest of us will not be gawking into the fish bowl…and that’s what matters most.
God bless you and your family.
Linda
I can’t even begin to comprehend what your family is going through. You sound like you are doing an amazing job. Be sure to stay strong so that you can continue to do everything that you are so capably and lovingly. My prayers are with you.
Al,
Thank you for the morning hilarity. I was audibly laughing and have residual chuckles. Who would think after we all had this black cloud of gloom hanging over us, that Katy would be the first to crack one-liners!
And I pray you were spoiled in some way yesterday, even though you got the present you wanted when Katy came home. You are a devoted, loving Dad….Happy Father’s Day!
Wishing you continued recovery.
PS-Everyone has an agenda and an opinion. May be selfless, may be selfish. How can anyone think you don’t know the system up and down, and the elusive magic herb would already be in Katy if it existed? When it comes to your family’s mental health, there is no excuse for any one’s opinion. A psychologist can assist or break someone, and you know more than anyone the needs of the Haye’s family. Can you just delete the comments of the loons, or can any loon who types be published? Sometimes, I wish you could save your energy for those who deserve it. “JUST do this…you Must do this, I WOULD HAVE done that.”
I find it a drain, and I’m just on the fringe. You are doing a great job, Al, so choose your battles, and defend at will. The good guys don’t need or want explanations. The others don’t deserve them.
Amen! Great news!
Glad you are all home and doing well.
No matter what’s going on Al and Katy, just keep looking for those rainbows. Their out there.
There’s no need to explain your personal feelings to our family. Your doing a great job. Just know that. Just deal with your Katy and children and everything else will fall into play. Enjoyed the end of you post.
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A little advice about Sen. and Reps. Don’t even bother they did not help our family at all. How about when Katy and our Gayle recover down the road, that we all go up to Washington, sit in front of them at a congressional hearing and ask them what the H— are you people doing up here. “FIX the MEDICAID system”. With Katy and Gayle’s spunk and humor I believe they could really accomplish something. What do you think about that? I’m just venting Al, but who knows it may work. I don’t think they even have a clue that Strep A has become another epidemic. So it seems.
Hope you get some “Good Humor” into your day today and I don’t mean “Ice Cream,” although that may be a pretty good idea also. Have a great day at home you two.
God Bless and take care,
The Burnette family in Fl.
Al,
Here goes old mouthy again…….Sorry about that!
This is how we’ve kept in touch with friends and family for 19 months. There are no e-mails to answer because we have never had time for that. This morning there were 33,127 visits to our daughters site. Can you imagine us answering all of them. You might want to consider Caringbridge.org . They serve millions of families throughout the world.
This website is free and you can personalize it to your liking. We write a Journal almost daily, and keep most of the personal stuff personal when we need too.
Perhaps a family member could check it out for you. It has taken a load off of our back and we can still keep people informed about our daughter. We couldn’t possibly have had time for emailing . It might be worth looking into. Just trying to take some of the load off of you. E-mailing YIKES!
Have a Great Day you two,
The Burnette family in Fl.
What a great Father’s Day, Al! I appreciate your post above. You are absolutely right in that if noone has an “ill” person in their life ,going through what you are first hand..it is difficult, if not impossible to even imagine. There is a lot going on “behind” the scenes that I am sure most of wouldnt even think about- as far as the day to day living, etc. It is unfortunate that someone would show up at the hospital and create such a scene….but I guess there is always that one person. You are an amazing person, and it is shown each time I read a new post. You and Katy and truly special, one of a kind people. Your kids are blessed you as their parents, and the world is blessed to have you share this story. This is truly a story of true love and a true family.
Glad Katie is home again!
On another note, I went through the same thing you did… well meaning friends who look to you as the ‘gatekeeper’. That’s what I was called through my husband’s bone marrow transplant and again when he went into liver failure. It was a very derogatory term, but being the gatekeeper was necessary.
I used to insist that people call me if they wanted to come visit him at the hospital or at home. It wasn’t just because he was tired and frail, but the risk of infection, transmitted disease, etc., was very high with his baby immune system. A cold, a fever and certainly an infection would have been deadly.
Most complied, but a few ignored me like I wasn’t there. Some called him personally while I wasn’t around and, of course, in his weakened state, he couldn’t refuse. It was frustrating and infuriating.
I’d greet them at the door with a bottle of hand sanitizer and a face mask. They’d look at me like I had three heads. One woman brushed by me and started to head upstairs to the bedroom. I told her to come back down. She ignored me. I had to use some pretty strong language and threaten to throw her out to make her come back downstairs to sanitize and put on her mask. She never talked to me again.
You are Katie’s advocate and sometimes that means standing up to the rudeness and ignorance, even if it means losing a friend or two. If they don’t understand that’s their problem, not yours. Katie is the number one priority and her health is more important than any of these so-called friends.
Cara
You go Al!! People should respect you and Katie’s wishes. You are doing the best for her even though others may not get it. They need too!!!
Al and Katy,
Hilarious! Katy is an amazing woman to have retained her sense of humor throughout your ordeal. And your dedication is beyond words. I just wanted to say that I read each of your blogs and truly appreciate you sharing your experiences and your openness. Kudos to the entire family for persevering. Happy Father’s Day!
Hey Al,
You guys are just too funny! You are a lot nicer with this situation than I could ever be.
I hope you had a wonderful father’s day.
I’m close family, her sister in fact, and I would not dream of just “dropping by” unannounced without Al’s permission to do so to see Katy, barring a major emergency. The family checks in with Al. He is the gatekeeper, respect it or please stay away. Sorry, the thought of someone, not even close family, barging in and interfering with my sisters care and privacy and making a scene in the ICU, has really gotten to me. If you have concerns, don’t bring them into the ICU.
Call before you drop by the house to visit too. The situation is not as it was before February 14, 2010 and you could be inconveniencing the family. True friends who care would not dream of inconveniencing there family. If you are visiting and Katy looks tired, please respect that. Yes, she IS tired of being cooped up, in the hospital, totally dependent, and so on, but you would be too if you were in her place.
The life or death struggle is hopefully ended but the long day at a time, healing a bit each day, leap ahead here, set back there, comfortable one moment, uncomfortable the next, is upon us. This is a long march to a new normal, a new life pattern for Katy and Al and family. Patience, consideration, prayers, and understanding along with acts of love is what is needed.
Your gifts will be appreciated that much more if they are given along with a simple phone call or a note.
Thank you, JenN
Al,
You do not need to explain anything. You are doing great.
But it may come off to some in a differnt way.
Just take care of katy, yourself and your family. You owe NO explanations. Some things are best left unsaid.
God bless you, Katy and your wonderful children. I thank the Lord for your blessings.
Please don’t be so hard on someone who hopefully meant well.
I know a local fmaily, whose 16 year old is fighting for his life. They welcome, welcome vistors and welcome prayers. Everyone just wants to help. Not sure what to do, but look to the Lord, he will guide you all.
people are good and mean well. Prayers.
Al & Katy –
We are strangers in this world – but I feel as if I know you from reading this blog.
You 2 have got to be 2 of the strongest, most courageous people in the world. To have endured all that you have to this point and all that you still have to go through is truly incredible. 19 years ago I was diagnosed with cancer at the ripe old age of 19. My parents, especially my dad, were my gatekeeper. Someone has to advocate for the patient – as the patient you are too sick and too scared to even begin to try. I think god everyday that someone loved me enough to do that job – all while having to deal with the reality of my illness. Al, I think it is especially difficult for you – you are also dealing with an entire family while doing your very best to advocate and care for Katy.
You are both an inspiration to life – marriage – family and the love that 2 people share. I check this blog every few days to follow the progress that Katy makes.
Al, you are doing a wonderful job. You are doing what families do – take care of each other. You are a selfless human being in my eyes.
When I was sick, my gramma used to say, “Keep looking up, that is where God puts rainbows.” I live by that everyday of my life.
God Bless you and your family. I live many thousands of miles away, but I sure wish I could meet you two!
I’ve got to interject with an anecdote here… when my husband was dying of liver failure, not a single one of our friends offered help – by that I mean real, true help. Oh, they visited, loved the fact that this former stand-up comedian could still make them laugh (while it drained him physically)… and as he failed and visits made him utterly exhausted, I had to limit visits.
One woman called and said, ‘I just wish you would let me help’. (Note, her offer of ‘help’ had never been offered before.)
My response was, ‘Well, I really need my bathrooms cleaned’. She stopped and giggled and said, ‘Well, I didn’t mean THAT.’
I said, ‘Well, what DID you mean? Will you sit with him while I try to have some time to myself? Do you want to clean bedpans? Wipe his bottom? Clean his bedsores? Clean up vomit?’ Absolutely NO response.
My point about being a ‘gatekeeper’ is that, while some people seem to mean well, it’s more often than not their own sense of wanting to feel that they’ve ‘done their part’ by just visiting. People do not have a clue what is needed and they truly don’t feel they’re being intrusive. They offer a vague ‘let us know what you want’, yet when push comes to shove, they’re merely there to vindicate themselves and say they did their part simply by ‘being there’.
Sorry to sound so negative, but human nature is a very funny thing.
Cara
Happy Katy is home now.
Pro bono psychologist via APA is an option while you are wrestling with Medicaid.
If you are the full time caretaker you should be able to receive wages from Medicaid for this.
Well of course you cannot should not give us every graphic detail then it would not longer be “your” life. I am a very private person and I feel you have shared quite a bit with us.
I think the best thing we can do for your family is to continue to pray for strength through this journey.
Being a full time caretaker is a tough job and everybody who has been a caretaker before Knows the caretaker needs to take really good care of themselves.
Hoorayee to Cara, Karen & JenN, you win the BEST comments today!!! What great advice & stories written with concern & thoght!
Keep posting your beautiful thoughts-you are a blessing to the Hayes family!
Hey, Nancy,
It’s just so much common sense and Al seems to have a handle on it. Jeez… I don’t know Kate and Al, yet I feel I do from his posts. I’ve been following this from the beginning and think about them soooo often. Al’s doing a phenomenal job keeping it together and Katie is such a trooper. I believe they drive each other and I’m in absolute awe. I’m touched, amazed and inspired. Al may feel humbled by all this outpouring of admiration from all of us, but their story is truly astounding. I’m looking forward to the movie (lol).
Al… you are amazing; Katie, you are a wonder!
Cara
Betty:
How do we get to your daughter’s site on CaringBridge?
Yes you can if it will help you all understand what The Haye’s family is going through. We get it. Al’s emotions are running in high gear and we highly recommend a website for them instead of a blog. Websites are uplifting not critical. At least ours is and has been since day one Dec. 2008 . Any entries can be deleted if they are troubling to Gayle or her caretakers. We never had to do that because we are lifted up by good thoughts and prayers from everyone.
Al should not ever have to explain why he has made decisions he’s made to anyone . I could tell in this post that his emotions are running high and he needs to come down from that just to maintain his sanity and be able to take on their new NORM whatever that will be. Each family has their own way of taking care of issues that arise.
My suggestion to the family would be that a family member take over that part of Al’s responsibility of informing Friends and Family on a Website for Katy. It’s calming and reflective of the days happenings. Gayle’s Dad started her Website while she was in ISCU for 3 months , to inform people of Gayle’s progress . This allowed Tim, Gayle’s husband to go on with his responsibilities of running his family and their small business. In our situation Gayle left home on Dec. 2 of 08 and didn’t return until late May of 09. She had a long 6 months away from home.
Gayle’s primary caretakers include her devoted husband Tim, her Dad and her 18 year old daughter Brittany who will be leaving for college in a couple of weeks. Between those 2 men we have 8 hernia’s a pinched nerve and a slipped disk. They “are” the heavy lifters. Now you know why we ask for prayers. Gayle is totally dependent on family.
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Al, I would like your input with giving Gayle’s website to anyone. It will not happen on your blog but only through an email address to me, which I am asking for you to approve. Let me know if you have any objections. This blog is about “Katy” and I fully understand that. Hope we can be helpful to all. We’re all about sharing and Katy and Gayle’s story’s are unique and heart wrenching. It’s all about LOVE folks and don’t we all need a lot more of that to go around.
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Our thoughts are for “a happy day for the Hayes family and their closest friends”. Yep! Just keep on looking up……….
To quote Karen:
Keep looking up, that is where God puts rainbows.” I live by that everyday of my life.
And so do we Karen ……………………….
Sorry I went on so long , Al please get back to me or Sister Jen. Thanks.
God Bless all of you today,
The Burnette family in Fl.
YOU should always remain in Katy’s hospital room. You need to speak to the doctor instead of the visitors speaking to the doctor. Don’t hesitate to say NO to hospital visitors and visitors who don’t call before coming to your home. You are a nice person who doesn’t want to hurt people’s feelings but you’ll just have to learn how to say NO. I doubt if anyone who reads this Blog is visiting Katy in the hospital or coming to your home without permission.
Al,
I am so glad to hear that Katy is back home.
I cared for my mother for 3 years. Her name was Katy as well. There are individuals who tend to get out of line when you are the person who is in charge of their loved ones daily routine. You just have to put your foot down and don’t feel the least bit of regret for strongly objecting to anyone crossing the boundries. It is good that you are making this publicly known here in your blog.
I now am caring for my father. Every so often, someone comes along that thinks it’s ok to go against the grain. I have no qualms about voicing my objections to those who are ignorant, or think that I am being over protective. People just don’t understand what goes on in the homefront when they aren’t around 24 hours a day. After a couple of years of arguing with these outsiders, they finally realized that I am right.
Please let Katy know that I think of her often. I think of the kids as well.
I keep up with Katy through this blog. I have not met either one of you, but maybe someday I will have the priviledge because I think you two are amazing and you have, as I said the other night in a comment, and I will say again, you have taught me so much about true love and commitment. I would hope I would have responded as both of you have to this tragedy, but I am not sure I would have. I will never forget how brave, how strong and how gracefully you both, especially Katy has handled this. Both of you are amazingly, unselfishly portraying a picture of the love God intended between a husband and his wife. Thank you Al for this blog, and thank you Katy for letting Al share you with us. I am so happy you are back home.
Hi,
You guys are totally wonderful, awesome people! Just keep doing what you are doing.
Go Team Hayes!!!!
Al,
I am Katy’s cousin Jesse’s wife, we met at the zoo in Toledo! I think I may have some pictures to share. But I have to find them first. Anyway, you are right, many people think the battle is over once you return home from the hospital (speaking from experience). It becomes a battle for recovery and getting used to your new life for all of you and is just as hard. Keep up the good fight and we will keep the prayers coming.
With lots of love,
Carolyn & Jesse
Al ,
Today I wrote to Kamala and responded to her request. Please read above comment in full.
I wrote:
Al, I would like your input with giving Gayle’s website to anyone. It will not happen on your blog but only through an email address to me, which I am asking for you to approve. Let me know if you have any objections. This blog is about “Katy” and I fully understand that. Hope we can be helpful to all. We’re all about sharing and Katy and Gayle’s story’s are unique and heart wrenching. It’s all about LOVE folks and don’t we all need a lot more of that to go around.
Sure hope you all are doing well today.
Betty in Fl.
………
al – what you share or do not share with us is your business. you do not owe ANYONE outside of Katy explanations for your actions. you do not need to justify anything at anytime to anyone. do not worry about everyone understanding or agreeing with you. God is our only judge and he knows your heart so i think your safe my friend.
Hi Al and Katy,
I haven’t posted before because I know you’re incredibly busy, and I didn’t want to take up your time with a message from a stranger — but — I figured one message wouldn’t hurt. GOOD FOR YOU for responding as you did to your “visitor.” You are, once again, my hero! And so is Katy.
I’ve been following the blog since CNN covered your story. I hope it doesn’t sound odd to say that you always make me smile. Your sense of humor (both of you) and resilience are really inspirational.
Best regards to all the family,
Yaara
Havana, Cuba
Al,
Rachel & I love you and your family. We think of you often. We’ve been getting Rachel ready to go on her trip….
Take care,
Susan & Rachel
I have followed your family since about Day 4. I have offered up many prayers. I have had Katy on my mind constantly. I amazed and humbled by your strength of family.
Stand your ground. Don’t be humbled. We have not walked a mile in your shoes.
You have walked with your head held high. What an awesome gift from God or Your Higher Power.
Rock on!
Carol
Al, You shouldn’t feel you have to apologize for having Katy’s best interests at heart. You are the head of the home, and with the love you and Katy have for one another, it’s obvious the connection you have. Katy’s spirit and your determination to love her and get her thru this is awsome. Proverbs 17:22 says, “A merry heart doeth good like a medicine”. It’s good to laugh. Stick to your guns and don’t apologize to insensitive, misguided individuals who may care, but don’t know how to show it. Love and prayers your way daily.
Al,
I do not know you nor your family but have followed your story! God Bless You! There is so much love you have for your wife and it shows everywhere. You do not have to apologize or explain yourself and your actions. People who know and love you respect your decisions and should know it is discussed with Katy. You have to have a ton on your mind and it never ends. I pray you and Katy have peace and joy forever. You are both two very loved, strong and couragious people. Keep it up and stay strong!!! Thank you so much for not giving Katy up. She deserves a lifetime as everyone does! GOD BLESS!!
Dear Al and Katy:
I am a stranger that has been following your story from the beginning. You are both truly an inspiration to me. For the last 10 years our family has been dealing with the traumatic brain injury of my husband. I was his ‘gatekeeper’ and its not an easy job. His family members were alot like the ICU lady and really didn’t understand their place. While it was clearly not what I wanted to do, his doctor insisted that we deny contact with his family since the contact was doing more damage than anything else. They blamed me and said that I was keeping him from the family he loved. What they did not understand was that their contact was upsetting him so much it was putting his life in danger. When I told them that, they said I had made everything up. Even to this day they claim they ‘wanted to help’ and ‘did everything out of love’. I still don’t buy it because if they meant well and did it out of love they would have HEARD me. They would have RESPECTED me. What I believe is that they simply wanted what they wanted at any cost. I agree with the lady who said that help is actually DOING something besides visiting (or making trouble). For anyone out there really wanting to HELP–send a check. Attend the fundraiser. Leave a meal on their porch. Send them gift certificates for pizza. Or maid services. Or gas cards. Send the kids a gift card to Blockbuster.
Al, no one really understands your position unless you’ve been there personally before. In my position I always felt like ‘the bad guy’. Sometimes I still do 10 years later even KNOWING that what I do for my hubby is in his best interest and what is best for our family. Its hard stuff.
What always got me was that everyone had an opinion. Well meaning or not, it is not helpful but harmful. So people when you give your unsolicited advice, please understand all you are doing is making this nice man CRAZY. Its not fair. He has enough on his plate. He has been making choices from day 1 that are the hardest decisions he’s ever had to make and he doesn’t need ANYONE telling him that he was wrong about ANYTHING.
Well I understand that in most cases people are ‘well meaning’ people need to understand that when you have a chronic illness/issue in your family, ‘well meaning’ people need to keep their mouths shut, do what they can to actually HELP the situation, to pray pray pray pray pray for the family and love them from afar until… Until when? Well that is up to Katy and Al–not you.
My question is: is there an address where we can send cards? That is what always helped our family deal was the encouragement from others sent in the mail that we could all read and receive love in a non stressful way in our ‘spare’ time when we had it.
Al and Katy I wish you all the best. If I lived anywhere near Texas I would be at the fundraiser. But I send my love and support from afar.
I read your story today on MSN and am completly inspired by Katy and your family. Thank you for sharing your story of hope!! I’m originally from Boston and am very happy to know that the medical team at Brigham & Women’s hospital has stepped up to help. I have made a donation and have asked my family and friends to do the same. Many Blessings!!