Notes from the Patch

One year ago today

One year ago today Bill and I lost our oldest son Jeff to ALS, or Lou Gehrig's disease.

Last month scientists discovered the cause for ALS, certainly a major breakthrough in eventually discovering an effective treatment for this devastating disease.

To all of our many friends and customers who donated to our grandson Jake's fund raiser for ALS I want to say thank you. Your donations made a difference.

You made a difference in the way this family coped with a disease without a cure. You helped us see first hand how important it is to love, support and encourage one another. Your love and prayers carried us through our heartbreaking journey with Jeff. Your donations made a little boy feel important and now we know those donations helped researchers find the cause and hopefully very soon treatment for ALS.

We miss Jeff terribly, but this new discovery makes us feel that his death wasn't totally in vain. I know that by my sharing Jeff's journey it helped raised awareness for ALS.

There isn't a day that goes by that I don't think of my boy but I'm comforted in the belief that he is in the loving arms of our Heavenly Father with a mind that is clear, body that is strong and pictures of his family in his shirt pocket.

Encourage one another,

A day in the life...

I guess, for me, the best way to get over bloggers block is to tell me I need only post one photo and a sentence to two a day. Suddenly I can think of lots of things to blab on about.

I met with a fabric rep this morning and although I was a bit picky I did manage to find a few cool Hoodie prints that I thought were kind of exciting.

But nothing was nearly as exciting as this

 

Oh, yes I did! 

It's a photo of the monitor that showed the inside of my sweet little CANCER FREE bladder. whoot whoot! (You should have seen me trying to explain to my urologist why I needed a photo of my bladder. "See, I'm a blogger and. Oh, never mind...").

When I got back to work Bill surprised me with these

Gorgeous, celebratory flowers from Flourishing Arts.

Today I am thankful for my heath and a thougthful husband that still gets nervous before my check ups and celebrates the good news with fabulous flowers!

Encourage one another,

 

 

Today

Today a young mother came into the store with her two small children.

She let out an audible sigh as she approached me at the register.

Tough morning? I asked.

Yeah, we just came from my son's pre K check up. There were shots and tests and tears and I had to restrain him. He really hates going to the doctor. I think I was even more upset than he was she said.

I commiserated. It seems like not so long ago I was in her shoes.

Jeff was the same kind of kid. He hated the doctor and even pulling out a splinter would usually cause him go ballistic. Most doctor visits involved me holding him down so the nurse could do her thing.

A year ago Jeff needed to have a breathing treatment that he really didn't want. Although he had limited understanding of what was happening to him he did know he didn't want a suction tube put down his throat. It was my job to restrain him. What I will never forget is how ALS had taken Jeff's strength. My nearly six foot tall, two hundred pound son couldn't fight off his mothers restraint. As much as Jeff hated that procedure, I hated having to hold him down a hundred times more. I hated seeing how weak and vulnerable my son had become. I hated seeing him slipping away.

Some days are harder than others.

Today was really  hard.

Encourage one another,

The Tale of Two Cities

I guess you could sum up my week as, it was the best of times and the worst of times.

I was dreading it. Big time.

I had my three month scope with Dr W. He said, in his words, "You have a beautiful bladder". (Thank you very much, she said proudly).

I had my six month appointment with my darling dentist. Normally I don't mind the dentist but I had a tooth that had been bothering me and I had convinced myself that I was going to need a root canal, a crown, an implant and a loan. Fortunately he couldn't find a thing wrong and sent me on my way with shinny clean pearly whites. (It hasn't bothered me since). 

We had Bernina Club, appointments with salesman and district managers. People were in and out measuring for carpet and paint. We were busy and short handed. 

My sister and brother in law are staying with us for a few weeks and I hated being too busy to be the proper hostess.

Things were, in a word, crazy!

By late Thursday afternoon I wanted to dance a jig. I'd entered into that black hole of a week and come out on the other side whole, healthy and amazingly sane.  It was all good.

Friday Bill and I celebrated by running away to Los Angeles to attend the LA Gift Show, something I haven't done in years. I was looking for some display ideas, flooring options and gifts for the store. Score. Score. Score!

What was funny was that we both constantly found ourselves looking for ideas and supplies for our granddaughters budding jewelry business. We found her some cute charms, chains, gift boxes, and one of those black velvet tee bars to display her finished necklaces on for her jewelry show. Such silly grandparents.

What am I doing today you ask? I'm staying in my jammies, all day and sewing. I need some "me" time. Big time! 

Encourage one another,

 

 

A lesson in Love

A week before our first baby was born Bill brought home a stray kitten. I loved cats and he thought I'd welcome that scrawny little fur ball.

I freaked out. Wouldn't even touch it. What if it had fleas? What if I had our baby and couldn't even hold it because the kitten had given me ring worm?

Poor kitty. Poor Bill. Dang hormones. That was one of the first recollections I had of my protective motherly love kicking in.

A week later my doctor said I could drink Castor oil to start labor. (They did crazy things like that back then).

I remember taking a big swig of that nasty stuff then sticking my head in the freezer so I wouldn't throw up.

That night I went into labor with diarrhea. For the record. I don't recommend drinking Castor oil before delivering a baby.

I was twenty two when Jeff was born. He was, without a doubt, the most beautiful baby in the whole. entire. world. The day Jeff made me a mother  was the day I discovered what real love was. My heart nearly burst with a love deeper than I ever thought possible.

Forty one years later Jeff continues to teach me about love.

As I shared Jeff's story and our journey, you felt our pain and helped us through this with your loving, encouraging words. You gave us your hearts when ours were breaking. I couldn't have gotten through this without you. I've never felt so loved.

Now, I think I finally understand  why I started writing this silly blog - this quiet, extremely private person that I am...or was. Through your comments you reminded me of the things I always knew. About God's love and His plan for us. You prayed for us and we were strengthened by your outpouring of love. Two years ago I had no idea how much love I was going to need to get through this. My heart is full to overflowing.

Today is Jeff's birthday. Tomorrow we celebrate his life and his journey to heaven with family and friends. Happy birthday baby. I love you.

I love you all.

Encourage one another,

 

 

 

 

 

So many blessings

I don't really believe in coincidence. I've always believed that things happen for a reason and that God shows His love for us by opening doors that ease our burden.

Jeff's Hospice nurse wasn't due back until Tuesday but after several calls back and forth last night while trying to get Jeff stabilized and comfortable they sent a nurse out to check him today. After a consult with the Hospice physician she suggested that it might be time for Jeff to go to the Hospice house, a private residence with just five private rooms and RN's on staff around the clock. Her concern was for Cherene since Jeff's care would continue to become more and more difficult. What a blessing that the nurse came out for the assessment even though she wasn't scheduled and that the Hospice house had a bed become available today.

I'm thankful that Cherene agreed that it was time for some help. The last few nights she and I would sleep on the couch next to Jeff's chair and I would wake up to see her preparing his medications in the wee hours of the night and morning, keeping careful notes of the doses, always putting Jeff's comfort above her own. I don't know how she did that night after night with so little sleep and then keep the boys happy during the day. I told Jeff that he has done some great things in his life but by far the best thing he ever did was to marry Cherene. I've never known anyone as patient and loving.

Jeff's hours on this earth are few, but we continue to find comfort in the promise that we will be together again for eternity.

I wanted to show you a few photos of our afternoon in the park selling wrist bands. The boys did it all. I just sat in my lawn chair and beamed with pride as those two amazing boys sold wrist bands and talked to people about ALS.

Encourage one another,

Saturday Update

This morning Cherene told the boys that daddy was going to go to heaven and live with Jesus. After lots of tears Jake and Nathan came out and each handed me $5 to buy tickets for the raffle quilt. I can't tell you what a comfort that quilt has been to this family.

Later this afternoon the boys want to go to the park to sell ALS wrist bands and collect donations for ALS. They've decorated a little table and are wearing their ALS tee shirts. So cute. I hope to get some photos to post later today.

Jeff is comfortable with the help of midazolam. For those of you that have had oral surgery, it's that great drug that doesn't totally knock you out but just sends you to la la land. For Jeff's Garces High friends reading this; Jeff is floating on a house boat on Lake Havasu right now and has had one too many brewskys.

The Hospice nurse is here going over Jeff's meds and taking his vitals. Hospice has been wonderful to provide everything we need to keep Jeff comfortable at home.

As sad as this is for our family please know that your prayers, notes and thoughts are so appreciated. Your love straightens us and we can definitely feel your prayers.

Encourage one another,

 

 

Update - Friday night

Jeff continues to fight but grows weaker each day. Today he received a blessing from his priest. It was emotional for me as you can imagine.

Afterwards I took the boys to lunch -  Jake suggested a "real" restaurant and chose Cheesecake Factory. Bless his heart, it's been months since he and Nathan have eaten out other than fast food. After chicken strips, fries and a huge slice of strawberry cheesecake it was off to an amusement park complete with go karts and bumper boats. We had a great day together although my heart and mind was with Jeff and Cherene.

Right now we're all watching a Disney movie together with Jeff right here with us - zonked out in his chair. He's surrounded by the family that loves him and that's the important thing.

We're taking it day by day - really more like hour by hour. I pray for a peaceful night.

Encourage one another,

 

 

Wild night, quiet morning

I feel badly that I haven't up dated sooner. So many of you pop in to see how Jeff is doing and I so appreciate that.

Last night was rough. Jeff's breathing became more and more agitated and labored throughout the afternoon and evening. The regular things weren't really helping much and by nine I told Bill that I was staying the night and sent him off to the hotel to bed.

After many calls back and forth to Hospice we got his meds to ease his discomfort and by eleven we finally got him to sleep.

One funny thing happened in the middle of the chaos. Cherene and I were trying to get Jeff comfortable. It was crazy, trying to help him breath, getting him in a comfortable chair, switching up meds and making emergency phone calls to the RN on duty. Jake walks in - in the middle of the whole drama, oblivious to what's going on and asks, "Has anyone seen my glasses case?" I look at Cherene and say, "Yeah, Jake. I think I saw it in your room." "Okay thanks!" and off he goes to bed completely unaware of what was going on.

As many of you have shared, Hospice is wonderful. They gave us an emergency med kit for situations like we experienced last night. No need to go to emergency or call a doctor. Everything is already in the house that we might need. We just call the on call RN and get instructions on how to administer the meds. Then they call back a little later to see how we're doing. If at any time we need an RN to come to the house all we have to do is call. What a blessing!

Speaking of blessings. Father Mark is coming tomorrow to see Jeff. He's the priest that married Jeff and Cherene and recently baptized Jeff. Jeff really likes him and I know his being here will be a comfort to us all.

I have been trying to decide whether to stay for awhile or go home and come back early next week. After last night it's very clear where I need to be.

Encourage one another,

 

Random thoughts

Jeff's Hospice nurse, Emily met with us for the first time today. She will be looking in on him one or two days a week to check his vitals and help with any medications he might need. It is a comfort to have her overseeing everything. Hospice seems wonderful.

Bill and I will be staying in Danville through the end of the week depending on how things go. Today Jeff has kind of a goopy cough and is rattley (don't you love my medical terms?) so I'm not sure what's going on there. Hopefully that will clear and he'll have a better day tomorrow.

We are looking into some nursing care for Jeff so Cherene can get away for a few hours a few days a week. It's difficult juggling two busy boys and a very sick husband. I can honestly say I've never seen anyone perform such unbelievably demanding tasks with such grace and love. At the top of my list of things that I'm thankful for, is Cherene!

To all of you who have donated to Jakes ALS quilt raffle, thank you. You have made one brave little boy very happy.

I'm sitting on the front porch with Jeff, watching the cars go by. What a simple thing. I recommend it. How often in our busy lives do we do that? Just sitting, enjoying the moment, feeling the breeze and reminiscing.

Here comes the ride group...it's about to get crazy!

Encourage one another,