We’re Gonna Talk About Bruno (Pt 2)

I can’t settle to anything all day. I try to work to keep my mind off of Bruno and what is happening at the hospital. I paint Baby Girl’s wall a dark navy – we’ve skimmed it smooth and are going to add wolf stickers to it. I wander around the house and jump at the slightest noise from my phone. My heart is in my throat and I’m nervous. I feel ill just looking at the paddock and not seeing him in it (a feeling that has yet to go away – I can’t even look at that paddock).

Right after we leave the hospital Dr. Alli sends me the radiograph and it is just as bad, if not worse, than the one I glimpsed at Weems. Also I don’t want it to go unnoticed that the two surgeons names are Dr. Alli and Dr. Tony. Weird! At 1:15 I can’t handle it anymore and I text Dr. Alli. Any updates? I ask. She answers “We are getting some special equipment sterilized now so that we can start first thing in the morning. I will touch base with you tomorrow morning and let you know we are going to surgery, etc. But he is definitely good to go first thing in the morning, he is bright and eating and doing well with the splint.” I am very relieved and I tell her so. The fact that they are planning so well means that they are very hopeful. Dr. Tony had told me when we were there that Bruno had a 50/50 chance of being ok again. Possibly a jumping pony again (I’m not holding my breath for this outcome, but wouldn’t THAT be a miracle?!). He looked at Baby Girl with her pony and said “I’m going to do everything I can for them.” Bless his heart.

The next morning I text Dr. Alli as soon as I think it is a reasonable time to do so. I am very nervous, I tell her. I understand, she says. “This is a big deal but we have the tools to give him the best shot.” At 8:17 they are prepping for surgery. I hear nothing further for the rest of the morning. At 12:30 I am jumping out of my skin. Baby Girl has gone to school and her teacher (bless her heart) is taking my texts and passing them along to Baby Girl like she’s her own child. Baby Girl has been sad all day, she tells me at noon. She says she’ll give her a squeeze after lunch and let her know that Bruno is still in surgery.

Around 1 pm Tony and I stop by the clinic on our way to Whitesboro to pick up my car (it needed a new windshield). I have to tell you that the receptionist at Mid South Equine is first rate. The kindest person, as everyone there has been. She immediately goes back to check on Bruno when I tell her I just can’t wait a second longer to know how he’s doing. She comes back and says that I really don’t want to go back there, but that he’s doing well, handling the anesthesia well and everything is going as expected. I start to breath again but I also kind of DO want to go back there. I’m surprised they would even let me. But in the end she convinces me that I don’t – that it’s too hard to see when it’s your own pony.

At 1:47 I get the text I’ve been waiting on all day. He’s out of surgery and in recovery. Dr. Tony tells me later that Bruno was a total champ and sweetheart except when he was waking up and wanting to stand – he was ANGRY and lashing out at that point. Poor baby. I just can’t imagine what he was going through. The two surgeons and several vet techs had to help him get up so he wouldn’t damage what had been done. Dr. Tony held his head while Dr. Alli held his tail and finally he’s standing. I text Baby Girl’s teacher and she responds back that Baby Girl is so happy at the news. Such a relief. This was the hardest part – the standing up after surgery. And we’ve made it.

My miracle bionic wonder pony is in his stall eating from a hay bag when Baby Girl and I arrive after school and lessons. She has been an emotional wreck and I know seeing Bruno will help her calm down. We bring him carrots and as soon as I say “hey Bubby!” as we turn the corner towards his stall he lets out the loudest, longest whinny. He shakes his head up and down a thousand times like he’s trying to tell us how much he’s been through and how much he missed us. He is not yet putting weight on his leg, but it’s only been a few hours and it must be incredibly painful. Baby Girl loves and loves on him and he “hugs” her back numerous times but mostly just searches both of us everywhere for more carrots. He licks our hands and tells us all about it.

He is tied up to a tie line that runs across the stall. This is to keep him from laying down. You can tell it annoys him, but it’s going to be this way for about two months so he’s going to have to get used to it. We adjust his water buckets higher so that he can play in them like he likes to do. When we get home I order a hanging ball toy that you can put hay and treats in and I also order a hanging salt lick. Hopefully these things will help him stay occupied during this long haul of a recovery.

I ask Dr. Tony if standing up without being able to lay down for two months will have any negative effect on him. He says no, he’ll be ok. By the next morning after surgery Bruno is putting weight on his leg. He crosses his left foot over then drags his right leg where he wants it to be. Dr. Alli sends me the picture of the x-ray taken after the surgery. The plates and screws and pins go from just above his knee all the way up to his shoulder. The entire radius is covered. You can see a black line where the two seperate pieces were put back together. It will take up to six months for the bones to grow back enough for that space to fill in. He will more than likely remain at the hospital for at least six – eight weeks. The cast will be changed as needed, but as long as he’s continuing to put weight on it that means he is doing well. Of course he’s on plenty of antibiotics to prevent infection and bute as well. So far he hasn’t needed any calming meds.

He is super alert, bright eyed and sweet as can be when we go to see him Thursday night. He searches us for carrots but we forgot them on the counter in the kitchen. I feel terrible about this. He does seem a bit more tired, but it is late and boy, I’m tired too. The surgeons are both cautiously optimistic. I ask about the long term. It’s basically a day by day thing right now they tell me. We will just have to wait and see. But the fact that he’s bearing weight on it is a good thing. He’s a little champ and they are both rooting for him. Baby Girl is able to sign his (new) cast Thursday night and that is fun for her. They added a more supportive over-layer cast on Thursday that is hard like a human cast. When we are there we see him stretch his front legs out like a dog and I am horrified. Bruno! I say, not the best idea Bubbie!! Please don’t do that again.

For the next few months we have to pray that nothing gets infected and that it all heals like it is supposed to. The surgeons reiterate how lucky he was. Dr. Alli points out that he was smart enough not to flail around and panic when he got hurt. That if the bone had gone through the skin he would not be here today. Because the risk of infection would have just been too high. That if he were a larger pony or horse he would not be here. That the risk of this kind of surgery on a larger horse is just too much. The weight bearing structures just wouldn’t be able to handle it. We WERE lucky and I am all too aware. Praise God, I think over and over to myself. I don’t know why Bruno had to get hurt at all, but Praise God that he is still alive. Because I need one more pony in my pastures that doesn’t have a job – just kidding y’all! There’s got to be a little humor here somewhere.

Please keep praying for him. And for Baby Girl. We’re not out of the woods yet. There is a long way to go. I will keep everyone updated whenever there is news and I thank all of you for your love and support!

We’re Gonna Talk About Bruno (Pt 1)

I know that many, many people are concerned about Bruno and anxious to know what’s happening and what actually happened. I deeply appreciate everyone’s thoughts, prayers, words and expression of love. I write this for all of you, and for Bruno.

Tuesday morning I am waiting on Baby Girl to finish getting ready for school. She is eating breakfast and watching YouTube Kids. I wander out to the back room of our house to take a peek at the ponies. I see Bruno laying down and my immediate thought is “this is an odd time for him to be laying down.” It’s 7 am. Feeding will happen in about an hour. He should be standing by the gate, waiting. So I watch for a minute and it looks like he’s itching his belly. Then it seems like he tries to get up, and can’t. So I say to Baby Girl that I’m going to go outside for a minute.

As I edge around the side of the house I hear him nicker to me. He knows I am coming. He looks back but he doesn’t get up. I start to run. When I get to him at first I don’t see what the problem is and I’m frantically searching for the reason he’s still laying down. Then I see it. The front right leg bent at an odd angle. The swelling above and all around the knee. Bruno isn’t panicking though, in fact he’s downright calm. As if he’s saying to me “Hey I did a little something stupid and I need some help.”

My phone locks up and won’t work. He might not be panicking but I am. I am trying to call Tony and finally it goes through. Hello? he asks a bit bemusedly. After all, he thinks I’m inside the house. I need you, I say, it’s Bruno. Come NOW. He doesn’t even hang up before he’s running. I try calling our regular vet. He can’t come, he says, he is tied up in the clinic all day. I call Weems and Stephens – and it goes to voicemail. I am trying to stay calm but inside I am floundering.

Tony gets to me. Bruno hears him coming and gets awkwardly to his feet while I hold onto his halter. His front right leg is dangling. Get the trailer NOW I say to Tony. We have to get him to Weems immediately. Tony’s immediate reaction is Oh Shit. He goes off to get his keys and the truck. I call my neighbor trainer, Rene, and she is thirty minutes away. Solving the problem she immediately calls the barn worker next door and he is on his way to help. I have no idea how we’re going to get him in the trailer but I see Daniel pick up a strap from our flat bed trailer and I’m glad he has a plan.

I keep talking to Bruno and hugging his neck. You’re going to be ok, I tell him. You’re going to be fine. I know it probably isn’t true. But I am lying to myself and to him. I can’t handle the truth at this moment. Tony gets the trailer as close to the gate as possible and lets down the ramp. We look at each other and each send a prayer up. We know what’s at stake here. Go get Baby Girl I tell him. She has to be here. She can’t go to school anyway, at this point, as we have no idea what is going to happen. Once she’s with us, she stands by silently with big eyes as Tony and Daniel put the strap around Bruno and encourage him, step by hop, to get into the trailer. It’s a ramp so we have the best shot at getting him in there. He willingly moves a hop or two and then stops. Come on buddy I tell him. You HAVE to do this. He’s such a good natured little guy that it’s not as hard as you would expect it to be. He’s finally in and the guys put the strap around his belly and hook it to each side of the trailer to give him support. I stay in the back and hold his halter as we drive slowly to the road.

He never once even attempts to put weight on that foot. He is fully aware that he can’t. There is nothing on the outside of his leg to suggest ANYTHING. No dirt. No mud. No cut. No indentation. No NOTHING. A grass stain on his knee is all that is different from the night before. We can’t imagine how on earth he has done this, but as I watch his leg swing in the trailer I know without a doubt that it is broken. Maybe it isn’t, I silently say to myself. Maybe it’s just extremely hurt and it will eventually get better. But it swings side to side and I just close my eyes and keep praying.

The trailer ride is rough but we make it to Weems. I’ve called ahead and they’re expecting us. A lovely lady called Karina looks in the trailer. Maybe we should just x-ray it in there? Then more forcefully – we’re just going to x-ray it in the trailer. A crowd of vet techs gather as they pull the machine over to the trailer. What have you given him already they ask? Just bute I say. I had run to get it while Tony held his head, before he brought the trailer over. As the first x-ray pops up on the screen I can’t help but gasp. The bone has separated from itself. It’s literally in two pieces, and one piece has shifted to the outside. No skin is broken, however. Which means we are VERY LUCKY. The crowd confers as Baby Girl cries into Tony’s side. They tell me that their surgeon is out of town but they are going to call around and see if they can find someone willing to try, who has the right equipment. Because he’s so small, he has a chance.

I’ll do whatever he needs, I tell them. I’ll even drive to A&M. If someone can do the surgery then that’s what we’re going to do. Give us a few minutes to send these x-rays out they say. Tony and I lock eyes again. There is no way we’re going to let this pony die if there is any chance to save him. Tony says “road trip” and I say absolutely. Wherever we need to go. But the point is he really can’t travel too far. Some vet techs bring some pieces of PVC pipe and about twenty rolls of elasticon and they get to work stabilizing his leg. When they’re done I’m plenty impressed. An A rated pony clubber couldn’t have done it better.

Finally the one in charge comes to me and says “do you know the place up in Tioga? Off of 377? Dr. Bottoni (Dr. Tony) is willing to take this on.” Yes I say, Mid South Equine. I’ve been there before to take advantage of their salt water therapy. That’s where we headed. Karina, the nurse? follows us with the radiographs (I think) but I don’t know this until we have to stop on the side of the road on the way there to readjust the strap around Bruno’s belly. He’s holding up well, and his spirits are good. I’m holding his head and Tony is driving as slowly as he can. I guess he has his hazards on but I don’t know for sure. When we stop Karina comes around the side of the trailer asking if we need help. I see that it’s her and all of a sudden I feel both relieved and extremely worried. This is obviously a very big deal.

When we arrive at Mid South Equine the surgeon comes out to take a look and she says we have to stabilize the leg EVEN MORE in order to get him out of the trailer. Another PVC half pipe is brought out and duct tape. Yep. Duct tape. If it moves and it shouldn’t…. well…. you know the rest. Anyway, we get him off the trailer slowly and into his stall. He’s obviously relieved to be somewhere safe. The surgeon explains to me that if Bruno were any bit bigger that they wouldn’t even attempt this surgery. That if the bone had protruded outside the skin that they wouldn’t attempt it. So we’re very lucky already and I begin to feel a small shred of hope. Bruno himself helps me to feel better as he is bright eyed and alert even amongst what must be some terrible pain.

They are ordering plates which have to come from Weatherford. So they don’t know if the surgery will be that same day or first thing in the morning. They send us home for the day to wait for news. Baby Girl doesn’t want to go to school and I don’t make her. Remarkably it’s only been about an hour and a half. It feels like half a lifetime.

Stay tuned for part 2 tomorrow…..

Pink Roses

For the longest time Mom hasn’t said more than a word. But lately she’s really been trying to talk again. I can’t help but wonder why, and what is happening inside her brain. This is one of those things that I think about daily. What IS happening inside her brain? Of course we’ll never know exactly, other than what the Alzheimer’s experts tell us, which is essentially that her brain is slowly dying. Fading memories and garbled words, the inability to take care of herself and the pain it brings to all her loved ones who simply want her to remember. That’s what Alzheimer’s is.

Be that as it may, she still recognizes me. The corners of her mouth will turn up slightly and her eyes will soften and crinkle. That’s how I know she’s smiling. Yesterday she found my arm with her hand and started patting and rubbing it. That’s how I know she’s still there, still my Mom. Yesterday she was leaning hard to the left and she was very tired, but she opened her eyes quite often, as if she was determined not to miss anything. I talked to her as I usually do, and we sat outside for a long time. Her breathing is slightly labored and she has a very wet cough. I’m told she’s better today than she was on Friday but still I am worried. I bring my hand to her chest and ask her if it hurts there. But she doesn’t respond.

When I’m there I simply chat to her and hold her hand. I ask her questions but rarely get an answer. Sometimes there will be a yes or a no. Sometimes I let her doze while I lean back in the rocking chair and contemplate life. I’ll watch her face and wish things were different. I will think about the end and what that will be like. For me, and for her. I’ll rub her hand and stroke her leg and make sure she knows that I’m there. I ask her what she wants for Christmas and she smiles and kind of laughs. As if she knows there’s nothing I can give her that will make up for all of this. I tell her I’ve bought a lot of Christmas presents already – even though it’s only September and she chuckles at me. I tell her it is September 12th and that is why it is a bit cooler now.

Her body twitches a lot, and her left foot drags while her right foot is permanently bent at a right angle. When we were walking yesterday I had to keep telling her to keep her feet up – and she was able to bring that left foot up some. I noticed that she could still do that, but she can’t keep it up. It’ll immediately start dragging again. So we walk very slowly and I show her the roses. There are two large pots there, one with yellow roses and one with pink roses. Mom can’t focus on things – she won’t look where you tell her to look. So I snip a pink rose off and bring it up to her face. She focuses on it for a second and I bring it up to her nose. Smell it, Mom, I say, smell the beautiful rose. And she closes her eyes and sniffs. But her mouth also slightly opens as if she thinks it’s something to eat. Isn’t it gorgeous? I ask. I think she says “beautiful rose” but it’s garbled and I can’t be sure.

I give her the rose but she can’t hold it. She’s already lost interest in it. I tuck it into her sleeve and we keep walking. But I keep looking at that rose. How full in bloom it is and how soon it will wither and fade away. A new rose will grow in it’s place, a new life in a new dawn. I decide to take that rose home and dry it. Turn it into something I can keep. So that I can remember that everything withers and dies, but something beautiful always will follow.

I may not be able to see it now, but something beautiful will follow. It might be just a small thing, it might be huge. I won’t know until it happens. But I know that when it does, she’ll be smiling down on me and holding tight onto that pink rose.

Pat and Feel

Five am is very early. That’s been my wake up time lately. About 3 I start moving around, uncomfortable because the Advil has worn off. I can last til about 5, 5:30 but then I have to get up. Which leaves me with almost two hours before I wake the small beast for school.

Two hours is a long time in the dark quiet of the morning. I can hear the owls hoot outside my office window. I pause to listen. I think about Daphne and I’m glad she is inside the barn. I start to think about that book I want to write and I know I need to start. But not this morning. This morning I’m going to tackle the god-awful mess that is our “back room.” The room where all the stuff goes that has nowhere else to go – what the British might call the “box room.” The room covered in glitter because it’s also Baby Girl’s craft room. The cat box is in there, as evidenced by the kitty litter scritching under my feet. The recycling. The stuff I use for camp. Basically if you don’t know where something is that’s the first place you should look for it. Chances are I’ve tried to chunk it back there because I’m tired of looking at it.

Needless to say it’s a wreck. Titanic size and daunting. I’m determined, though, and I dive in. Next thing I know it’s time to wake up Baby Girl. I’ve sorted through the mess, emptied the glitter outside in the dark where I listened to more owls, cleaned the cat box, swept the floors and mopped. All before 6:45 am. Even the kitchen floor has been mopped. Because if you have the mop out you might as well use it.

I stand briefly at the door to the back room and I “pat and feel” for a minute. How many of you southerners know the saying? My Mom and Dad were big pat and feelers. It means you admire a job well done. Especially a HARD job well done. It means pride in your accomplishment, and I come from a long line of hard workers. I admire the room some more and then sigh, because I know how long – exactly – the room will remain pristine. Maybe an hour.

Today I did the playroom. Not at 5 am, but while Baby Girl was at school. The temptation to throw shit away when she’s not there is so strong I can barely keep it in check. She has gotten more organized as she’s grown and when I can convince her (sometimes by yelling) she CAN put things away nicely and importantly – where they actually go. I’m going to make an organizer and accomplisher of her yet. And yes, I know accomplisher is not an actual word but I like it.

I like to pat and feel. I like to show others the fruit of my labor. I will go back during the day multiple times to look at it again. As long as it still looks good I will admire it and pat myself on the back over and over again. Showing the husband what I’ve done is almost as satisfactory, but he’s not my Mom or Dad and he doesn’t truly appreciate the concept of the pat and feel technique. Dad would tell you a dozen times in one day what he had done that day that was important to him. He insisted that you pat and feel his accomplishments as well as your own. And you better had, or you would be subjected to hearing about it fourteen times. Sometimes it hadn’t even worn off by the next day, or God Forbid, even the next week. So you see I’ve had lots of practice at the pat and feel technique.

I’m desperately trying to pass this along to Baby Girl. I am going to make a hard worker of her yet. There’s hope there. She takes excellent care of her pony – when she wants to. You cannot deter her when she is in the middle of doing something – she is going to finish and that is that. Even if you were supposed to leave for something or other fifteen minutes ago. Once she’s committed she’s all in. To be honest this pleases me except when it involves watching something on youtube kids. Then I want to throw the computer out the window. And sometimes her along with it. Then I just slam the computer closed and handle the consequential crying with a shrug and a “get your butt out the door.”

Anyway, if you are a morning person I highly recommend cleaning something at that hour. Your husband won’t walk on it, your kid won’t insist on playing in it, and you can get some serious work done, in peace. Chances are you yourself have enjoyed the pat and feel technique. Even if it’s just making it through the day and actually showering once. Maybe getting dressed, or brushing your hair. Or maybe you wrote a dissertation or built a bookshelf. Whatever it is, OWN IT. Enjoy it! Pat yourself on the back because, Girl, you deserve to.

Missing Them

The smell of the hot iron brings her to me. She stands at my shoulder when I am in my kitchen, chopping celery, making chicken pot pies the way she used to. She watches the time when I make fudge. I’m baking banana bread and she’s there – in her Julia Child’s kitchen way while I clean up every little thing as I go. We’re laughing until the song “More Hearts Than Mine” (by Ingrid Andress) comes on and all of a sudden I’m alone again, standing at the sink bawling my eyes out and missing her so hard I can’t breathe.

I’m in the bedroom with Tony while he changes out an electric plug but he’s swearing because it’s not going easy. “You gotta get postured” I tell him. He rocks back on his heels and looks at me. “You gotta get postured,” I say again. “You can’t do anything if you aren’t postured.” Dad always said that, I tell him. He stares at me, his face clearly saying “what on earth?” “Well,” I say, “you got to get positioned in a way that makes it easy for you to complete the task.” I get another look. So Dad and I leave the room and leave him to it.

Another song – “You should be here” by Cole Swindell – has me breathing deeply in the car trying to hold it together. Because he should. He’s missing out. His Fu Fu misses him and so do I. We just aren’t the same without him around. I can’t even drive down his street. I never want to see the house where he was so miserable and our whole world fell apart again.

Almost four years ago Mom is with me in my house and we are decorating for Christmas. A little figure breaks – one that I love – it is a pony with a little rider on the end of a lunge line, and there’s a trainer holding onto the other end. It is me, of course, and Baby Girl on the pony. It comes off the table when Baby Girl (4 at the time) accidentally pulls on the tablecloth and it shatters. I am shattered, too. I start to cry and my Mom comes to me and hugs me and tells me she’s so sorry. I know she is. I know also that it’s probably the last Christmas I’ll have her with me, the last time she’ll be able to tell me she’s sorry. The grief comes in knowing. The figure breaking wasn’t the only reason she was sorry, nor the only reason I was crying.

Yesterday I ordered that little figure off eBay. I paid a pretty penny for it, but I can’t wait for it to arrive. I need that figure. I need to hold it, to close my eyes, to remember clearly that moment. Those last moments, those last everythings. She’ll still smile at me but the words are gone. Her eyes no longer focus on me, except briefly. You can’t leave me, Mom. Please don’t leave me.

Everywhere I go Dad goes too. We have a blow out on the trailer on the way home from a horseshow and I can hear him having a heart attack because we don’t have the small air compressor he bought me in the trailer with us. Because it’s broken and hasn’t been fixed. I tell Tony it must be fixed before the next show. Dad wouldn’t like me traveling without it. Luckily Tony is there and can change out the tire that blew. But we can’t find air for the other tires anywhere. Vandalism has created a problem. We make it home but Dad is sitting in the cab with us the whole way.

Every day, every moment, all the time and everywhere, they are with me.

And I miss them.

Your Story

Hey Mom, I need to talk to you. The other day I ran into a friend of mine and she made a point to tell me that the words I write, in these blog posts, really mean something to people. That they touch the right people. She is suffering, too, Mom – her own mom also has Alzheimer’s. She teared up when she told me that and I was humbled, that my words could so affect someone else. I didn’t know how to respond – I’m not great at expressing my feelings out loud.

But it moved me, all the same. I’ve written these blog posts for myself really, to let out my emotions and grief. But, Mom, maybe I could do more. Maybe I could tell the WHOLE story. The story of you. Your story, your fight, your memories. I could put it all down on paper and maybe someone would read it. I’ve long thought about this, and have said to close friends and family that I intend to do it. Yet something has always stopped me. At first I thought it was my own grief, I find it hard to write when I’m mired down in depression. But I know it is something more. It is your dignity that stops me. This is your story after all, not mine.

You would hate it, Mom, what I want to write. You would be embarrassed and upset, and angry. You did not want this to happen to you. You made us all keep it a secret for a very long time. When you could no longer tell me how you felt I took it upon myself to start telling the story in these posts. I did it for me. I did it so that others would understand. So that maybe someone else wouldn’t feel so alone and discouraged. So, you see, I have already betrayed you.

I want to tell the gritty, dirty, terrible details. I want to start at the beginning and tell the truth of how this disease slowly steals your mind, your memories, your abilities and your life. I want to tell how it affects your family, how Dad couldn’t stand your pain and how I wanted so bad to advocate for you every step of the way. How I wanted to be sure I never let you down, and how I both succeeded and failed. I want to tell about your feelings, and my feelings, your grief and my own, your fear and mine. I want to tell your history and all the skeletons in the closet.

What I need, Mom, is your blessing. I need to feel that you are ok with it. That maybe you would understand, and want to help others, too. When you were first diagnosed I could find no books, no articles, no anything that really helped me understand not only what was happening at the time, but what would happen in the future. A few personal stories in books, yes, but nothing that went in depth, nothing that shared the deep, agonizing loss of both of us. Nothing that shared the mortification of losing your abilities such as going to the bathroom, knowing where the toilet even was, or the trash can, or your bedroom. The effects of sundowning, and the terrible terrible guilt over leaving you that first day in the memory care facility.

Through it all we have never lost each other, although I myself feel horribly lost from time to time. When I go to see you and lay my head on your shoulder I can feel you with me, truly with me. That physical connection has never been lost, that emotional connection still runs strong. You might have forgotten who exactly I am but I know you will not forget that I am important to you. I don’t know exactly who I’ll be when you pass, the pain that will be etched on my heart when I can no longer feel you will be very hard to bear. I guess my point, Mom, is that I want to tell your story so that you and our story will never be forgotten. So that it might help others feel not so discouraged in their journey with Alzheimer’s. And because your story matters.

I suppose I will have to go on without your blessing and hope that you will forgive me. Someone has to tell this story. I guess that someone must be me.

I am a strong woman because a strong woman raised me.

The Face of Alzheimer’s

I’ve been dreaming about my Mom a lot lately. In one dream she was having trouble making a sandwich and instead of asking for help she just gave up. I discovered the bread and mustard and everything out and asked her if she had eaten and she replied “No! I couldn’t remember how to make one.” She was upset and I told her it was ok to ask for help. I sat with her and made it for her while she said “but I should have been able to do it.” And I said of course she should, and but that we all need help sometimes.

There was a lot more to the dream that I don’t remember – this was the part directly before I woke up. I remember how flustered she was in the dream and how she said she guessed she needed a “big sister” to do it for her. I am not a dream analyst and I have no idea what any of it means. But it’s the fact that I can talk to her in these dreams that make them so incredible. Obviously in this most recent dream she was at the forefront of Alzheimer’s. But she could still talk to me. In reality, and oh there’s a lot of stories I could tell, I remember the day she put the egg shells into a cupboard because she couldn’t remember what she was supposed to do with them. The utter confusion as she held the egg shells. My heart wrenching because I knew I could not tell her to put them in the trash can. Waiting until I could move the eggshells when she wasn’t looking.

If you want to know what Alzheimer’s looks like, look closely at my Mom’s face. She is the face of Alzheimer’s. This is the toll it takes. The vacant expression, the staring off into space – the listlessness and the leaning. Look at her eyes. She no longer sees the world around her, she can only rarely focus on anything. If she manages to look directly at me sometimes I’ll still get a smile. Mostly not. Maybe she’ll say a word or two to me, maybe she won’t. Today I showed her a picture of my Dad, all dressed up in his Army uniform standing in front of a flag. Who is this I ask, putting it carefully in her line of vision. Who is this? She glances at it before her eyes slide away. I don’t know she says clearly. You don’t know who this is? I ask again. She mutters uh-uh. Usually I don’t do this to her. I don’t ask the hard questions and I don’t try and make her remember.

But today I was curious. I set the picture down without another word and then I looked at her and said “Do you know me?” I asked it twice and she just looked away. No response. Nothing in her eyes. So I sat down and read to her, the storybooks she used to love. Where The Wild Things Are, Tikki Tikki Tembo, Strega Nona. I did all the voices and she was interested… I think. She didn’t try and look at the pictures. She didn’t watch me as I read. But she didn’t fall asleep either, so I’ll take that as a win. One of the care ladies stopped by and I think was sorry to have interrupted but I kind of wished she would have stayed and listened too. It made me have the idea to do a story time like my Mom used to do. So I messaged the Director and asked her if I could do this for the residents sometime.

The time before when I visited, Baby Girl was with me. We sat outside for awhile and decided that it was too hot so we took Mom inside, to her room. Baby Girl and I decided to “organize” Mom’s room. It’s always tidy but Baby Girl went through the postcards that Mom’s best friend Panchita sends weekly without fail and decided which to hang on the wall and the door. I went through Mom’s closet and found a ton of stuff to weed out. We thoroughly enjoyed ourselves and Mom sat and took it all in. She never said a word but her eyes were open the whole time and she did look around a lot. We talked and laughed anyway. Mom enjoys the commotion – she likes to listen to people chatter around her.

Thursday July 22 is Mom’s 76th birthday. The day before I am throwing a party for her. It’s going to have live music thanks to the Director of the facility, and grilled salmon and lovely potatoes thanks to some of the ladies that work there. I’ll bring the decorations and the cake and all of us, Tony included, are wearing purple to honor my Mom. All the residents and caregivers are invited. It’ll be a great day and I’m really looking forward to it. You might wonder why we would make all this effort for someone who will not know what is going on – but I tell you if I can make her feel the love that surrounds her then that is what I’m going to do. I’m going to celebrate the heck outta my Mom! She deserves a party. We all do. Alzheimer’s is an ass kicker for the entire family so Alzheimer’s awareness is the theme – purple and butterflies – because it needs a cure badly. Even some of her oldest friends are coming. Friends who I hope will understand that what they see is not the lady they knew, but that somewhere deep inside she still recognizes them.

I pray that I never have to be the face of Alzheimer’s like my Mom is. I pray that what she is suffering is not in vain – that if I can somehow make a difference that I will. I pray that my Baby Girl doesn’t have to go through this twice. That she’ll be around to see the cure. So give us hope on this day, this day of Alzheimer’s awareness. Thursday July 21st wear purple for my Mom and thank your lucky stars or your merciful God that your brain is healthy and strong.

Memories matter. And in this family, no one fights alone.

Independence Day

I read. I suspect you know that about me already. Recently I have read “Get Out of Your Head” by Jennie Allen, “Talking to Strangers” by Malcolm Gladwell and I’m currently reading “Raising a Strong Daughter in a Toxic Culture” by Meg Meeker, M.D.

This past year has been extremely challenging as I watched my Dad’s health deteriorate and then watched him pass away, handling all of his affairs along with my grief, and not being able to draw comfort from my Mom, who has no idea he has passed, and probably doesn’t remember him at this point anyway. When I go see my Mom I keep a happy face, a smile and encouraging words. I wonder if she knows how fake I’m being. How anxiety grips me before and after each visit, how guilt and sadness can bring me down for the rest of the day. She searches my face sometimes as if she’s looking for the me she used to know. As if this person in front of her, while very welcome, is a stranger she can’t quite get used to.

And yet I do draw some comfort from her. Just to be able to still touch her face, hold her hands, and breathe her in. She’s still here and that is everything. I know the day is coming when even this will be gone from me. I realize what an important role she has always played in my life – my parent, my cheerleader, my coach, my counselor, my rock and my friend. She always had my back, no matter what. Deep conversations and deep emotions never put her off. We laughed and we cried and we loved and I already miss that part of my life more than I can communicate.

However, in reading these books and doing a lot of soul searching, I have come to realize that now I must be all of this to my Baby Girl. It’s her turn. Mine and her’s turn. Of course there is still a good dozen years before we can naturally morph into “friends” but my job right now is to set the stage for that eventuality. I need to set aside my fear, my grief and my anger and focus on what she needs from me. I’m afraid I haven’t done a very good job of it as all these huge emotions took their toll on my mental and physical health.

I’m ready now. Ready to teach her that I love her no matter what, that she’s important, not just to me and her Daddy, but to God. I’m ready to show her that God created her through love and that He intended for her to be my daughter. I believe that He sent my Baby Girl to comfort me through these times and to let me know that it doesn’t end with my parents’ deaths. They set the stage and it’s my time to act. Everything that they taught me, everything that they were – it’s time to pass all of it along to her.

I have to start with my own health. Just last night I caught myself saying “I just feel fat.” And Baby Girl not only heard me but commented “you always say you feel fat but you’re perfect just the way you are.” She loves me as I am, and so does Tony and so does God. That’s pretty powerful. Instead of feeling fat and discouraged I will feel grateful and blessed. God put these people in my life, along with some great women friends, to continuously remind me that I am loved, and in turn, I will love as well. BUT I will also treat my body better – like the temple that it is, and I hope that I will be able to teach Baby Girl to love herself exactly as she is.

She’s 8 years old now, and I realize also that I will, in fact, miss these days. If I don’t get out of my head and into her life, I will miss it entirely. And I will regret it. She’s an amazing person, full of love and laughter and sensitivity and emotion and imagination. She’s a lot like my Mom. And a lot like me. Last night I sat and watched the complete rapture and joy on her face as we watched the fireworks at Lone Star Park. She has never seen real fireworks before and she was super excited and enthralled with it. The last song they played was “God Bless the USA” and I teared up as I watched, and my husband put his arm around me (this was the song my Dad and I danced to at my wedding). I looked up into those fireworks and at the joy on my daughter’s face and I knew that I had to let her live in a world of happiness and peace and total love. Not grief or sorrow or anger. My Dad would want us to be happy. Everything he ever did was for my Mom, my brother, me or his grandkids.

Today’s the day. Independence Day. I will live for you, Baby Girl, and for me, and for God. We will take this life by storm and we will not back down. I’ll be here for you, until God calls me home. I pray that you will be strong enough to face whatever life throws at you, including having to put me in a home if I succumb to dementia. I pray that I am strong enough for you. I promise I’ll do my best. And I promise that my heart will never, ever forget you. I know my Mom’s hasn’t.

Happy Independence Day everyone. I hope you find peace in your heart and love and laughter in your home.

Pray for Rainbows

As the months go on since my Dad’s death, my grief gets deeper and more insistent. Grief for my Mom has overwhelmed me for years, and with my Dad’s death I feel like I have no one left to talk to. There’s something about the way you can talk to your parents that just doesn’t transfer over to anyone else. It’s a selfish type of talking – knowing that your parents will listen and support you in whatever you say, knowing that they will have your back and will be there for you no matter what. At least, that is what I had with my parents, and when it was ripped away so suddenly with my Dad, and so slowly with my Mom, I found myself floundering and drowning in anger and sadness. I was in no way ready to lose them, at their age it just seems cruel. They are only both 75, though Dad would have been 76 now. I prayed for years that they would be around a long, long time. I know that my plan is not always God’s plan but still I find myself angry all the time.

I did not plan to raise this child, my Baby Girl, without them. I did not anticipate that I would have to. I assumed they would be there, rejoicing with me, and groaning with me, and celebrating each milestone and achievement. I imagined stories told of when I was young, comparing her attitudes and personality to mine. I imagined Mom just laughing and saying “let me have her for awhile, you need a break.” I imagined Dad with his Fu Fu wrapped around his little finger, letting her get away with murder and yet demanding his respect at the same time. I imagined her growing up with them so close, so much a part of her life. I can still see all that, in my mind’s eye. I am wild with anger that it won’t be so.

I am angry that I have to face this world alone. I cried tonight over Uvalde. How can I raise my Baby Girl, how can I be happy in a world where such evil exists? I am grateful that they don’t know what happened today. I am gutted with grief for the parents that have learned today that their child isn’t coming home. And then I think to myself, how do I deserve to be unhappy? I should not feel this anger and pain – these parents today have it so much worse than I do. I was loved. I was cherished. My parents were loved and cherished. They did not die when I was a child, I did not die when I was a child. I don’t deserve to be this upset. There are so many in the world that have it worse than I do.

Even before today, before Uvalde, I have thought that I am not worthy of the pain I feel. I try to hide it. I talk to people every day with a smile on my face, with my feelings deeply buried. I am tired, I’ll admit that. I take naps – I try to hide from the grief. In sleep I can escape the pain. In my dreams I see my Mom, sometimes without dementia but 99% of the time she is somewhere along the path of Alzheimer’s. I never dream of my Dad. Not once. I wish I would. When I’m awake I eat to fill the empty space – I try to make myself be healthy but I am fighting a losing battle right now. My grief is so overwhelming that I feel like I can’t control what I eat. I am too busy trying to make it through the day without taking my anger out on my husband or my daughter. Wine numbs the pain, both physical and emotional. I never get drunk but I’d be lying if I said it didn’t help, and offer comfort in a time when I will take any type of comfort I can get.

The other night I was sitting in Baby Girl’s room while she was trying to fall asleep. I was sitting and singing to her, after she had had a hard day. I have to resort to the only songs I know all the words to – Twinkle Twinkle Little Star, Rock A Bye Baby, Rudolph the Red Nose Reindeer, Jingle Bells, and finally, Amazing Grace. As I sing I think about her pain, and I wonder how I can ever help her if I can’t even help myself. But then I think, maybe this is what she’ll remember. Maybe she’ll remember how hard I tried. That I was willing to sit with her in the dark until she softly whispers “I’m ok now.” Maybe she will remember how much I love her, so much so that I kill myself trying not to show her how sad I am. I know sometimes I fail. She sees me cry. She wrote me a note once that said “You are the best Mom I ever know. When you cry my heart breaks.” And I want to tell her ditto, Baby Girl, ditto. She exudes love and empathy and caring and self-resilience. I think she’ll be ok in spite of me.

With God’s help maybe I’ll be ok in spite of me, too. In time maybe there will be true happiness again. With wine, good friends, good clients, a loving husband and a child that needs me, maybe one day I’ll look back on this time and think “Wow, I am sure grateful I made it through.” I pray for this. I pray for peace in my heart. I pray for joy. I pray for a life that I think is worth living. I am not worried about Heaven, I am worried about here, now, my earthly time. For all of you who are struggling with something – with grief and pain and unbearable sadness – I pray for you, too. I pray for rainbows.

Thoughts about Heaven


Do you ever think about Heaven? What it is really like? I think most of us do, from time to time. The concept of Heaven has been on my mind most days lately, as I struggle to make sense of where my Dad is, where my Mom will be. What does Heaven look like in your mind’s eye? I’m curious. Do we all have the same thoughts of beautiful clouds, angels with wings, golden roads and supreme peace? But here are some more thoughts…

When Dad died I expected to feel something. Something serene and holy. I did not. I saw no light surround him, saw absolutely nothing out of the ordinary. I’m not even sure we were truly there when he passed. I think he might have already gone while we were all looking the other direction. It was only when the nurse said something that we gathered around and held his hand and talked to him. But I honestly think he was already gone.

Did he look back? Did he see us with his body? Did he have any regrets? Any time for regret? Did he see a light? Was there an angel there? Did he meet God right away? Or Jesus? When he’s in Heaven does he still have a body? What does he look like? Young? Or is it just a presence that changes depending on what other souls he encounters? Maybe with his parents he’s a child again. Maybe with his friends that have passed he’s in his 20’s. Maybe he has met the child I miscarried. Maybe he held that baby in his arms as the old man he was. When Mom joins him, will they be young together again?

After he died a friend of mine sent me a book entitled “Many Lives, Many Masters” by Brian Weiss. She hoped that it would bring me some peace. In this book the author insists that, through hypnotherapy, he brought a woman back into other lives she had had throughout history. Reincarnation. Many, many times. The woman found peace through hypnotherapy and by visiting these other lives she was able to ease all her anxieties. Each time she was “between lives” she was just basically floating in peace. Not in a Heaven as we know it. But just floating. The “Masters” came to talk through her, and explained to Dr. Weiss that there are many things we must learn on earth and until we do, we will not be in the presence of God. We will just keep repeating lives on earth until we learn all our lessons.

This book brought me MANY more questions than answers. My friend meant well but honestly the book unnerved me. I had never thought about reincarnation before. Never considered it as a possibility. However, now that I have read about it, I MUST consider it. Just recently I read a story about a little boy that ran into a man’s arms in a restaurant and the man held him and rocked him until the little boy fell asleep. A complete stranger. But the little boy seemed to “know” him. When my Mom met Tina, there was a definite kinetic energy there. It was almost as if Tina was my Mom’s mom in another life. Like she recognized her and had been waiting for her all her life. I’ve never seen her respond to anyone like that before. And maybe it’s just the Alzheimer’s, but whatever it is I’ll take it. It almost hurt my heart the love was so strong.

There are many, many stories like this. If you read and look closely you’ll find them. What does it mean? Is reincarnation real? Do you really just float in space between lives? Part of me does not want that to be true at all. I want to think of my Dad in an actual Heaven, rejoicing at the feet of God. I want him there waiting for me, and for my Mom. I want to know he is at peace. I don’t want him, or my mom, to suffer through any more lives. Because life IS suffering, even if you have a fabulous life, it is never going to be like living in the Glory of God.

The other day I was out mowing the big paddocks and I thought to myself, can me Dad smell freshly cut grass in Heaven? A completely random thought, but not unusual for me these days. So, can you? Can you smell and think and feel? I don’t mean feel emotionally, but feel tactically. Maybe not on that one. Eternity and Heaven are very difficult concepts to grasp. I don’t think any of us are actually capable of it. Even with these stories you read, like “Heaven is For Real” and all these other tales of people coming back from Heaven to tell us about it … I’m skeptical. Not of Heaven existing, but in what form? Maybe it is different for each of us. But the most important thing there is, is to be reunited with the souls you connect with. And if that doesn’t happen… because you have been reincarnated …. well when will I get to see my Dad again? What if he’s not there waiting for my Mom? What if he’s already “gone on” to another life?

I did not want to think about all these things. I love my friend, but sometimes, you just want to think about things the way you think about them and leave it all well enough alone. The book was enlightening. And frightening. However, I still can see my Mom’s face when she sees Tina’s face and I wonder ….