Mark's ILLNESS

Here is my youngest daughter and my son. They came by on Friday night to see their Dad. Mark cannot hardly see now and so he keeps his eyes closed because he said he feels like he is in a fog when he opens them. He is still pretty funny and can remember things we can't! It is amazing.

So I have kept a journal of sorts on Facebook to share what is going on with my husband and our walk through Glioblastoma or brain cancer (always fatal) I know some of you have asked to see some of my days and so I am putting from of the posts here.
The post below is what happened today Friday April 25,2014

The doorbell ran at 7:45 today and I was off and running (the lawn kid was here to mow) . Grabbed my clothes, ran a brush through my hair, took out the garbage etc.

Cleaned and picked up, washed the checked on Mark again and went back to putting laundry in and folding the clean stuff. 

Nine o'clock hit and Mike came (he usually brings breakfast for Mark on Fridays). This Friday was different because our friend Craig Goodwin came to baptise Mark (adult). Mark was worried about not having an adult baptism so Craig baptised him with Mike, Shelbi, Janelle (daughter in law) and me watching. Since Mark was afraid when he had the dream about the church not letting him in, Craig addressed this and was loving and patient and compassionate. 

I quickly grabbed some colors catchers and threw the beautiful car quilt in the wash with a couple of prayers to go along with it. It came out lovely and clean and I folded it until Mark had clean bedding again.
Right after this happened, Edith, the Hospice bath lady came. WHAT an angel! She shaved Mark first, then bathed him, then changed the bedding and showed us how to do all of this. It was wonderful because she was so kind to him and so wonderful to us in showing us what to do.

Last night I was trying to change him and it was a comedy if it wasn't so sad. Mark who can barely move was trying to help me because he could see I wasn't doing it right. I told him I was sorry and that I did a good job with "our babies". Last night he had dreams of someone stealing his p-nuts and I told him it was the squirrels in the backyard and I was going down to buy more...he was more relaxed then. Then came a dream about some contract. I ended up giving him some medicine and he was ok then. Phew.
So Edith left and then Mark's Mother came to visit and stayed in the bedroom with him for about an hour. She said to me "call me when he is awake and I will come back. I smiled to myself because if I did that he would be asleep by the time she got here. He is awake very little and it is the kids that can get him to open his eyes and share.. Janelle baked cookies and cleaned up and then left. 

Then Nurse Cathy came and we talked about Mark'status and she shared how her son age 14 was killed. I cried. It felt good though her story was so tragic. I gave thanks I did not have to go through anything like this with our kids. NO wonder she is so wonderful as a Hospice nurse!

Cathy left and then all three of my kids showed up and sat around Mark. Jason fed him and Mark had a trip to Seattle planned for everyone to see his brother Rich in Seattle. They planned a golf trip and Mark said he would drive the cart. It was fun hearing them laugh and plan. Mark promptly shut his eyes again and fell back asleep. The kids went upstairs and talked about the day and how much we all love Mark and how funny he still can be. He had us all laughing. It is a sad/happy time. Mark has one foot in heaven and one foot in our bedroom. We are loving this final time we can all be together. Life is good and God has certainly blessed us.

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YESTERDAY 4/24

Mary Lou Donahue Weidman

Yesterday

A new day and a new experience. Well, last night I was up most of the night with Mark has he was agitated and still having his fitful dreams. He settle down this morning as I had to get up for the day. Mark's sister came over and I could barely get him to wake up for breakfast and I basically just MADE him wake up. I had oatmeal and fruit and cinnamon rolls (costco I am sorry to say, not homemade). Lindsay helped him eat as today he did not do well with a fork or a spoon. He is weaker still. After breakfast we realized he was wet so I got Lindsay and his friend Steve who came to visit ) out of the room as Mark is embarrased. I tried to stand him up (lifting 170 pounds. and tried to get him to stand....so hard and not much luck. I did get his under[ants off and some wipes to clean him. Then I tried sitting him down and got the t-shirt off which was wet in the back. If it was so sad it was a comedy sketch. He was slumped over and I could not lift him back into place and I needed him off the bed to change it. I called for Steve and he helped. I am sure he was surprised at how hard it is to move him as it is dead weight when he cannot help you in any way. We got Mark into the wheel chair and then I got the bedding and his sister wiped down the mattress and offered to take the BIG bedding home to wash. I got clean sheets and got the bottom sheet on and Steve helped get him back in bed and he did alot of lifting and shifting and re-positioning. PHEW. Steve prompty left to go and do errands and I am sure was surprised at the change in his friend. Lindsay and I chatted and then it was time to take more pills downstairs to Mark and he would not open his eyes and was half asleep. I talked to him and pushed the two pills in with a little piece of cinnamon roll as a chaser. He loves those and it works.
He slept HARD until about 20 minutes ago when Jason came to see him. Jason is helping him eat and soon I will give him three pills and see how he does tonight. I am praying he does well so I can get some sleep. Tomorrow morning Edith the shower lady comes to bathe him...hooray! The nurse said the time is coming closer and to be prepared...can one ever be prepared? I will be surprised at the moment he passes because that just seems what we would do...don't you think? Hugging him, washing his face, talking about God's love and making him feel comfortable makes me feel better. I remember someone said to me once "would you rather have your feet washed or wash someone's feet?" I clearly like washing his feet and am thankful it wasn't the other way around. I do feel fortunate. Love you friend.

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Day before yesterday- 4/23
I have already learned so much from Hospice and tonight Mark has had horrible nightmares that made him cry out to me. He said the church will not let him come in. I guess it is worry about something he doesn't need to worry about. But he has cried the last three times this evening. So sad. I finally got some lorasepan out of the Hospice kit, called them and asked to give it to him. I gave him half of it and he calmed down and then I gave him half of a "peacock" cookie and he was so sweet. I told him that God was right there in the room with us and holding his hand even if he didn't feel it. His eyes were closed and he gave a gentle smile and went to sleep. I hope that is it until he needs the bathroom. It is so hard to see the daily changes and when someone worries about God's love for us. It made me so sad. I said "God loves you inifinitely more than we will ever know and He would always let you in the church, you know that. He looked so relieved. This disease takes even the most beautiful things in our lives and changes them. It makes my heart more fond of him than ever and it reminds me of when my son was so ill and needed extra love, prayers said out loud and a cookie. We really don't change that much as we get older. LOVE is the key.
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I have been writing this journal for quite awhile and if you would like to see all of it you can join me as a friend on Facebook- 
Mary Lou Donahue Weidman
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Thank you dear friends who have sent prayers, cards, post cards, letters, money and LOVE...I consider myself the luckiest quilter in the world today and thank God for YOU. 

Lovely Easter Images and a funny surprise!

So as many of you know, I have a block swap group. I am working on a little booklet of girls that are really fun and I sent a pattern out to test to my block swappers. Since Mark is so ill, Connie offered to make the girls I needed and I chose the fabrics. I chose a pretty cheddar dot for the bodice and then OH OH, I noticed that they were kind of X rated. So I am sewing rick rack to all of them. I know you will love the booklet with the girls...make adorable quilts!!! Comments???

COWS, wonderful COWS and My Husband Mark's status

This wonderful and happy cow is by Barb Lambrecht who I have known for many many years and she is so talented and knows how to do fun stuff!

This wonderful cow quilt is by Pam Dransfeldt who does amazing quilting and her middle name is "joy" -remember the purple cow? Well she had this stuffed one on the trike as a little kid...very fun!

A row of cows at the Ventura show...great fun-wish I had the individual cows to show you...I taught the cow class there and many of these were made in that class! Such fun!

More cow quilts from Ventura show

My buddies with their cows...very fun...and happy!

Below is a photo of my poor husband who has moon face from so many steroids and other pills he is taking. He was so ill this week as they decided to cut way down on the steroids too fast and he had hallucinations, could not get in or out of bed, could not walk and was so confused about everything but going home to heaven. I thought he was going to. He said "I have a rendevous with Jesus at 2pm today. Later that afternoon he said to my daughter in law, "I was there and already and God never showed up." She said "you still have work to do I guess." He said "nuts." 

He has said some outrageous things and they have been kind of fun. I just hug him and asure him that things will be ok. They up'd his steroids and he is doing so much better though he still has the swelling...but he can walk and he can eat and he can enjoy some thing and think straight. I said today as he was sleeping that my daughter left a wet washcloth on the nightstand and ruined the finish. With his eyes closed he said "get a soft cloth and some mayonaise and it will come out." NOW where in the world did he hear that??? Made me laugh.

We have moved him down to a little tv room we had and turned it into a bedroom on the walk in floor and we took an unfinished bathroom and redid it with a large shower that one of those benches can fit into for showering. What a blessing!
    

Nothing fancy but we are thankful that he has a bathroom that he doesn't have to climb the stairs for. It is all white and no one can believe I chose this. For now and my sanity, this is good. Grey floor is tile and nice to clean.

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This is a hard road but you know our family has never been closer, I have never been more blessed by friends and each day I get to read a comment that is loving and kid and caring. 

Ronda Reece Leal from Texas started a fund for us to pay medical bills (yes we have them) and other things that have come up unexpectedly like car problems etc. And I am going to get a vault for the two of next to my parents and also go and arrange for Mark to be cremated when the time comes. All of this costs money.

It is kind of sad that Cancer (Glioblastoma Multiforme) makes it so you cannot work to make money and it costs money to have it.  I am sad for those that do not have friends.

I was happy to see that certain teachers and lovely students have given to the fund. 118 people in three weeks! You will never know what this has done for us. 

http://www.gofundme.com/7z9m5o

I had never heard of this but will do what I can from now on when people are trying to get funds to help themselves through something like this.

Thank you sincerely for your nice comments, cards, post cards, fun things you say, prayers, and kindness.

Quilter's are fixers and they have certainly blessed both of us.

I read Mark the cards and the comments and I cannot tell you how many times he has cried and me two as I am reading.

As I said to some friends on Facebook, do not feel sorry for me because we both feel that this is in God's plan for us and we are growing closer to Him and I am learning how to be caring and kind in a way that I never thought I could. It honestly is such a honor to help him and love him through this. We have been married 45 years and I have never loved him more than I do now.

This is Easter week and for some of you it was Passover. I pray that this brings you joy, God's blessings and closeness to someone you love or many someone's. 

Count your many blessings as I do. I feel very very lucky.

Love you and thanks for checking in here....

A day in my Garden Last Year...such peace and beauty and fun

 This archway is being replaces this year as last year it fell apart from the weight of the hops and trumpet vines on it....soon there will be the same things growing on the newer one

 Wow doesn't love a good sunflower?

 Birdhouses her and there- the squirels lave the little ones alone- the big ones, they gnaw out the hole so they can live in there in the winter...sigh

 I have stopped evr purchasing or trading for bird houses as the squirrels always make thg ood ones fall apart.

 My bottle tree (one of them) with things growing up on it. Now it is bare waiting for the vines to wake up and start covering it...I do love my bottle trees

Friends in my garden!

My cottage garden from a distance

My fountain where quail hide with their babies underneath

My garden now looks like all dirt but later on this year it should look alot like this if I can find the time and energy to work hard at it. We do not have automatic sprinklers so between Mark and I we watered all of the time. Now I will have that all on my shoulders so we will see how much garden I save...it is alot of work and alot of walking and pulling etc. But it is so worth it when you sit in a chair and enjoy the quiet and beauty.A green (HUGE PINE) crashed into our arbour and ruined it so they hauled it off and I am having it replaced with the insurance money. It takes the glare off your head when you sit on the patio and gives shelter. It will be right utside the room that Mark will not be in when we get it fixed up. He can hardly make our stairs now and has NO strength like he used to. He is frustrated if he wants to move something or life. Each day he goes a little more downhil but he always thinks me and the kids and our neighbors and anyone for helping him out. I love him more everyday. I am hoping he can sit outside his new little room on the patio and see the birds and squirrels and hear the water in the fountain.  God's beautiful hand in nature is healing for sure...at least for me. Hope YOU enjoy your lovely garden as well.
Love, Mary Lou
PS, the Go-Fund site has over $6000. which is wonderful and will be going off to pay for medical bills (ONLY) http://www.gofundme.com/7z9m5o  I cannot thank those of you who have given to this fund for us. God bless you.

Story Quilts, Hospice. My Friend Ronda and Love for Each Other

I am so happy to share this wonderful Story Quilt! This was started in oregon by my friend Jill in a Story Quilt class and she loves to golf, read, garden and loves color and her kitty! She put all of these ideas together with a Flower Power border and Joila! Magic. I want to do one about my Garden as these two friends inspired me to think things that grow and sunshine and being outside and happy. I think the Flowers from my Flower Power book are especially happy! But didn't these two best friends do great? I give them both blue ribbons. Carol An below started a BUG quilt that had her car from many many many years which is a BUG and also beetles-it won first place in the Oregon quilt show and I think the Pacific Northwest show also...it is amazing. Below she did it again with her glass of wine and beautiful flower garden. Notice how she used COOL colors that fall back for her flowers. Wonderful. Bpoth girls chose differentscolor palettes and  both created happy, wonderful quilts about them. Imagine if your Grandmother or great Grandmother or your Aunts did this! These quilts will be saved and studied and cherished. LOVE these!

Below is a photo I took last week of Mark's baby brother, our son our Grandson and Mark...I love this.

So yesterday was a bitter sweet day for both Mark and I and our family and friends. We went to Cancer Care and they basically said that they have done all that they can for his Gioblastoma-Multiforma. It is a horrible thing for anyone to have and he has been through it. :0)

Yesterday he got up and was so weak and slurred his words and he fell four times last week. So, they sent in the Hospice specialist to talk to us about it and the timing of how long they think he might live which is short.

He cried and could not talk though we both knew really and we held hands. He tried to speak and I was trying not to cry and the angel person named Mary who helped us said to him "you are worried about taking care of your family aren't you?" And he sobbed and nodded "yes." She said "that is understandable but your family has a good belief in God and they just want to love and comfort YOU. Then he said, I am not afraid to die because I believe heaven will be amazing and I will get to be with God. Then I said "this is what makes this journey easier." And the girl said "yes." So now we have it on the table. Our three kids came over and we all had memories and my son put my husband to bed and I could hear them talking and crying together. My son came out of the bedroom and said "I feel so much better because I got to tell Dad everything I always wanted to and how amazing and loving he is and how I will always try to be like him and live up to his example. Made us girls cry. But in the end for me who is trying to be the example of strength, it is really quite beautiful to see how our love for our kids and prayers for my friends over the years has come back to bless us. I am sad but I am happy to and can see where your prayers and kindness have come back to bless me.

I have always said that Quilter's are fixers and we always want to fix each others problems. We are the "church" of quilt and we are the believers in each other and love and kindness and other people who are not quilters, are the unbelievers. :0) And my husband always says "yes, but you are more of a cult because once you begin to quilt, we can't get you back!" Haha.

So, a lady named Ronda Reese leal wrote to my daughter about helping us out. We have many medical bills from Mark's surgery, his brain pathologies, and other things from specialists earlier. Now we are trying to get a little tv room made into a bedroom on our main floor and an unfinished bathroom next it it done. Everything has hit and Mark had to quit work on the day he was diagnosed last June. I pay some of these bills with my teaching money and book money. I have had to cancel jobs due to being home with Mark and it has been hard. But honestly God has been faithful and I sold a quilt for a nice sum and Molly helped me sell little ones at Asilomar which helped pay for a new furnace as ours was cracked and leaking carbon monoxide (we didn't know this but it was not working well. ) ANYWAY, sorry about blithering....

Ronda set up a fun to help us out so I can take care of some of these nagging bills. It is such a relief as I have to be the strong one and worryng about Mark AND the bills is alot.

So if you want to even just look at this site, it is loving and wonderful and dear. She has so blessed us.

http://www.gofundme.com/7z9m5o

OK, enough said about that.

Oh a really happy note for me, my Granddaughter Mary (Lou) drew these two drawings for Mark and I to make us happy and it did! LOVE the innocence of kids art! Isn't it wonderful? Tonight my two daughter are coming over to spend the night and watch movies while I cook something and we will just be happy to be together in the home they used to sleep at. It's been a long time. With every sad thing there are always blessings. My family and my wonderful friends have been my happiness and God has made me feel so happy to know so many GOOD people. I still am trying to laugh and count my many blessings and hope you are too.

 Think of kids art as a Story Quilt and I bet you could do something quite wonderful!
Until next time, thank you sincerely for your thoughts and prayers.