When times get tough

you learn who your true friends are. I said before when my mom passed and I will say it again now. I learned who I can really lean on when things are at their worst. They are the people who often asked how my dad was even if I never brought up the subject of him. They are the ones who texted, called, or facebook messaged me after he passed just to say sorry or offer some support.  I was shocked and humbled at the show of support we have received from friends.  Just a simple call, text, or email was enough to show me the someone actually cared about what I was going through. I was also shocked at the people who I had assumed would be the ones for me that failed me. However life goes on and I realize that not everyone knows how to react in a situation like this. I just hope when they are in a similar situation that they realize how their behavior or lack of it can deeply wound a person. I am just happy for those who did show they cared and grateful that I have a great group of people behind me holding me up with their support.

“In times of grief and sorrow I will hold you and rock you and take your grief and make it my own. When you cry I cry and when you hurt I hurt. And together we will try to hold back the floods to tears and despair and make it through the potholed street of life” ~Nicholas Sparks, The Notebook

Reunited again

 Four years, one month and one day after my Mom passed away, my Dad followed her.  He never stopped missing her and gave up his will to live when we lost her. I think for him his cancer diagnosis was almost a relief because he realized it wouldn't be long before he saw her again. My Dad and I had a complicated relationship to say the least. As a kid I really disliked him as an adult I learned to accept him for the way he was and eventually totally loved him. His final moments are something I will never forget and I keep going over them in my head. Should I have stayed right next to him, was it wrong I was sitting away from him watching tv? He was sleeping finally after almost three days so I didn't think he would have passed so fast. My father had a lot of fear those last couple of days. I am sure anyone who is facing death would be fearful of the unknown. The thing that gives me solace is knowing my mom was waiting for him. He told me he could hear her calling for him to come now. He asked me if it was mean for him to want to go with her instead of stay with us and I assured him it wasn't. A joker to the end, as I sat next to him crying, he gave me a hug and told me he loved me then he proceeded to grab my nose and pretend like his thumb was my nose between his fingers. A little after that when my brother arrived, he was sitting in his bed making faces at me. That was my dad, always getting someone to laugh, the perpetual clown. I will miss him more than I thought possible. Where my days were filled with thoughts of him or being with him, there is now an empty void.

Random conversations

I love have conversations with my kids, they never cease to surprise me. Today Lauren told me she wanted candy and I said I wanted a bigger house to which she agreed completely. The rest of the conversation went a little strange.

Me: Okay, if we get a bigger house we have to get rid of someone in our family first.

L: Okay! Allison

Me: Okay, I will call the kid sellers and tell them to take Allison so we can get a bigger place.

L: NO, NO! I want to keep her.

Me: Okay then, who?

L: Nicky!

Me: Fine, we will get rid of Nick to get a bigger house.

L: NO! I will miss him. You know what? (looking around)  I like this house, it is perfect for us. :D

Answering questions

So things have been in sort of a holding pattern with dad. He is on palliative care for now, but I think we may be moving him to hospice soon. I really appreciate people asking me about him and myself, but there are days when I am just so tired of talking about it. Lately when someone asks how he is, I reply "he's alive." I think they get a bit annoyed, but in reality people do not want to hear the truth. They don't want to know that he is dying a slow agonizing death. That he rarely has an appetite and when he does he often chokes on the food because the cancer is slowly closing his esophagus. They don't want to know that he is choosing not to have a feeding tube put in place so all we have left to do is to watch him starve to death, he's lost 6 pounds in a month and I am sure there is more to come. He is now a shell of the man he used to be and hates the fact that he has to be a burden to us.(We do not feel he is a burden, that is his own thoughts.)  He is often confused and at times am not sure who I am or where he is. He is sick of living and wants to die. So that is how he is.

When I am asked how I am, I never really know what to say because people don't really like to know the ugly truth. The truth is that I am scared to death. I am stretched to the limit and it takes all I have to hold it together. I am so thankful for my kids and niece during the day because without them to care for I would fall apart. I don't want to lose my dad even if he tends to be a crazy, cranky old man. You never know how important your parents are until you have lost one. I pray every day that he goes quickly and peacefully yet I feel a tremendous amount of guilt because I am basically praying for his death. I don't want to watch him die, but I will also not allow him to do it alone. He misses me when I am not there and I have come to need that time with him as much as he needs me to be there. I feel guilt because I don't have the time, home, or resources to care for him. I feel bad when I can't make it by him for a day or two. I feel like a horrible parent and wife because everything in my life is lacking in some way. So when asked how I am, I say fine because otherwise I will completely fall apart.

Finally Validated

I finally feel validated for all my worries and suspicions concerning Nick. At his last doctor's appointment, the psychiatrist finally admitted that she believes he is on the Autism spectrum and is sending him for further testing and an official diagnosis! While in my head I was yelling "Well, DUH!" My heart was hurting a bit because everything I have thought about him was true and I wasn't just being an over analyzing parent. I knew there was something different about him when he was 19 months old and put his head through a bedroom door out of frustration. Did you notice that I didn't say I knew something was wrong with him? Because there is nothing wrong with my son, he is just a little different as we all are in our own way. As I told his doctor that Nick is just Nick and we will deal with whatever comes the same way we have been dealing with it. Today is World Autism Awareness Day so in honor of that day, I am posting a website so you can inform yourself more about Autism.
What is Autism?

I broke my son.

My beautiful, happy, fun loving little boy is broken and it is my fault. You see Alexander has always had a bit of anxiety. When you have an older brother with ADHD, ODD, sensory issues and possible Autism, you learn that life can be crazy and not always in a good way. Especially when that brother constantly threatens running away. Every time Nick would go into a fit as we call it, I would see Alex slowly inch his way to stand in front of the door in case this was the time Nick was really going to follow through. Well, it got better while Nick still has fits, he has stopped threatening running away. Alex is always worried about the dog running away because if she is off her leash she takes off, however she has always come back. The damn dog is afraid of her own shadow so she wouldn't get far. He has gotten better about that but you can see the effort it takes him not to panic when she goes by the door without a leash on. So here comes the part where I broke him. When I talked to my kids last month about my dad's health, I inadvertently added more anxiety to my baby. Ever since,  he has had extreme separation anxiety when it comes to me. He wouldn't even go on an outing with his Grandparents because I was not going and had made himself sick to his stomach. Now, it is rolling over to school and every morning he is sick to his stomach and close to tears. Yesterday afternoon he found out I would be gone all weekend and the poor guy was up all night with stomach pain because I won't be here. I kept him home from school thinking that perhaps it was a real stomachache, but an hour after the other kids were at school, he was perfectly fine. He ate breakfast with no issue and went back to annoying his sister. I called the school and got the ok to bring him in. As soon as he realized he was going to school, he had stomach pain, got extremely upset and cried all the way there. I offered to give him something of mine to keep in his pocket, but he said it would make him sadder. So like in the book The Kissing Hand, I gave his hand a big kiss and told him to squeeze it tight if he got upset and missed me. It took all the strength I had to make him go to school, but I know I wasn't doing anyone any favors by allowing him to give in to the anxiety and stay home. I am hoping that perhaps this weekend's trip will help with the anxiety when he sees me come home Sunday, maybe then he will realize the I am not going anywhere for a long time.

My family lost a special lady.

Last week my husband's Grandmother and my kids Great-Grandmother passed away, almost a month after a massive stroke. I remember her when I first met her 14 years ago, she was an energetic, nice, and very welcoming woman.  My own memories of a Grandmother involve nursing homes and her death. So to meet this amazing Grandma was a treat. She treated me as if I was one of her own and not just someone who married into the family. I got to make her a cake for her 80th birthday and I was so honored to be asked to do it. I remember at a different party she was asked if she wanted cake and before she would say yes or no, she asked who made it. As soon as she heard I had, she said she definitely wanted some and wouldn't have eaten it if I hadn't made it. It is the little things like that that only a Grandma can say or do that make you feel special. My kids loved having a Great Grandma and knew that they were extremely lucky to be blessed to have her. I know she loved seeing the kids, she always had a smile on her face while she watched them play. I tried to keep them quiet, but she made sure to let me know that they weren't bothering her. So on Saturday as we said our final good-byes to a woman who touched all of us, I couldn't help but remember how great she was. My kids will miss her but they think of her as another person hanging out with my Mom up in Heaven watching over all of us.

Thanks

I just wanted to thank everyone for your support during this difficult time. We are all coping as well as can be. Some days are good for me, some not so much. I told my kids last weekend what was happening. They were upset, but I felt they needed to be prepared. It was the first of two difficult conversations I will have about my dad to them.  I have been hanging out with my dad for a couple hours every night. Most of the time he watches TV while I crochet (my new hobby) or read. I know he just likes to have another person with him and doesn't need a running dialogue. He is in a rehab place right now, but will eventually be moved to my brother's home to be cared for until the end. We felt it was better for him to be surrounded by family than strangers in his last weeks or months. It is going to be hard for me though. He has been minutes from me for months now and soon he will be almost 1/2 hour away, which really isn't that far, but when you have four young kids, that hour traveling is a lot. If we could have him stay with us, I wouldn't hesitate. I am so used to being his care taker or keeper as I fondly refer to it, that it is going to be very hard for me to give up that control. Although I will get updates and have information about him, I will not know everything. However as I have said before our house is tiny and it is just not possible for him to stay here. He has come to terms with what will happen and although he has not given up on life just yet, he is accepting. To everyone who tells me to let them know if I need anything or if they can do anything, thanks. Although don't count on me calling or asking. I know, I know I should ask for help when it is needed, but I won't. That is just the person I am. However you can continue to pray for him and our family as we deal with this.

There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go. ~Author Unknown

When time is ticking away,

you can't help but wish it would slow down. He was told yesterday three months, maybe up to six. I've known this for a while in my heart and after speaking with the doctor the other day. In my gut I don't think he will make it to April, but he has surprised us so many times he will probably prove me wrong. :) He was pretty calm telling me this while I visited him last night. I already knew so I was able not to become a blubbering mess. I mean we are all going to die, it is just a fact of life, but now all of  a sudden I feel like there is this gigantic clock ticking away over our heads. He is ready even though he is scared. He wants to be with my mom and to feel better. I am spending as much time as I can with him without neglecting my family, although I can't say the same for my house. The house is the least of my worries right now and if anyone has an issue they can kiss my ass. No one can ever understand what I am dealing with unless they too have dealt with it and even then we all have different circumstances.

I am so thankful for my in laws who have been able to care for the kids at a moment's notice even though they are dealing with an ailing family member. I am thankful for my "computer" friends who have been an continuous source of support, for my real life friends who always ask if I am ok, how he is, or just being the person on the other end of the phone I can vent to. I am thankful for my amazing husband who held me up when I was losing my mom and is doing the same while I deal with this. He understands when sometimes I just don't want to talk because I am all talked out. Also for my family who help as much as they can. You really find out who your true friends are when you deal with something like this.

Today would have been my parent's 48th anniversary. They only have one picture of their wedding, thankfully it turned out good. ;)

My dad is dying.

There, I said it even though it is hard to utter those words out loud. It is amazing that I started this blog because of a shocking pregnancy and I needed an outlet to talk, then the death of my Mom, my own health issues and now my dad.

 He was diagnosed with Esophageal cancer in 2001, but after chemo and radiation he was doing well and was considered in remission for many years, until this past July.  It started with him having a hard time eating and throwing up. I brought him to the doctor to see if it was a recurrence which was what I thought. At first glance there was no tumor, but the doctor did a biopsy around the previous area to see. It came back positive. We also found out that he has a very small aneurysm in his aorta starting which can't be fixed because of where the cancer is. He opted not to do treatments this time around. He lost his will to live the day my Mom died. He ended up having a stent put in his lower esophagus because the cancer was closing his esophagus making it hard for him to eat or swallow.  In the meantime, we had to move him out of his house to a retirement type place because he just was not able to live by himself and he couldn't afford someone to live with him 24/7 to care for him. He seemed to be doing well, he made friends and was even going on some of the outings. However, his health started to nose dive again, he developed pneumonia and his congestive heart failure was irritated. We got that cleared up and he started having problems swallowing again which meant another stent had to be placed.  We did that and I ended up having to take him to the hospital for extreme weakness, he couldn't even sit up unassisted for more than a couple of minutes before he fell back. They found he was dehydrated and kept him to pump his fluids back up. He was doing better and was supposed to go home today, but the doctor called to tell me he got worse overnight and he was sending him for a ct scan of his head and back since he was unable to sit up again.

There is nothing I can do but be there for him. He is so tired of living in his body that is giving out on him. He cries and tells me he just wants to go to sleep and never wake up. What do you say to that? He is debating between hospice and something called palliative care which is basically the step before hospice. I want him to choose palliative care, but in the end it is his choice.

My dad and I had our differences when I was growing up, Hell you can even say I hated him, but I have learned long ago  to let go of that. He raised us the way he was raised, he didn't know any better. I am not saying I don't still suffer the scars from his hurtful words, but I am moving on. The thing that strikes me funny is how so many people including the doctors and nurses tell me what a great thing it is that I am taking care of him. I find this unbelievable. I am doing what needs to be done. I am fulfilling my promise I made to my Mom to take care of him and I will keep doing it until he dies. So I am asking all of you to please pray for him, that he finds the peace he deserves.