to grieve

This is supposed to be a Wednesday Weigh-in post. But, to be honest, I haven’t been paying any attention to my weight or the scale in the last couple of weeks. I apologize to my fellow OSB “b’ches”. I’ve got a weight watchers meeting later this week and although I dread getting on that scale, I know I need to do it.

The past couple of weeks have been somewhat of a blur. An intense and surreal blur. I feel compelled to share some of the details with you. I don’t know, maybe it will help us get through this weird and yucky place. Sharing has usually helped me in the past.

From the moment we received the phone call on Saturday afternoon up to today, everything has seemed to be somewhat dreamlike. Nothing sinking in comfortably. Emotions moving from numbness to deep aching. Constantly vacillating between doing OK and then feeling completely overwhelmed by heaviness. Wanting so badly to find a place to put it all. But there’s no good fit.

Saturday. Brian had just gotten finished vacuuming the front of the house and we were getting ready to feed the babies solids. We were joking around in the kitchen. In just a couple of hours the babies would be in bed and Brian was going to his Mom’s and Grandma’s house. Just a couple of hours.

His cell phone rang.

This is going to sound SO CLICHÉ, but I knew something was wrong. Usually, when he gets a call, I let him have his space. But this time I was watching him. I was watching his face from across the kitchen. He looked blank.
I couldn’t hear what was being said on the other end. He said, “What do you mean?” But imagine it without the question mark. It wasn’t really a question.
He then said, “I’ll be right there.” I was desperate for him to show me something but his face was blank. He hung up the phone and said, “Mom died.”

I sank to the floor and started crying. I didn’t know what to say. I said, “I’m so sorry. I’m so, so sorry.”

“I was going to be there in just a few hours”, he said, already beating himself up.

As he was getting ready to leave, I realized that I wanted to be with him…that I should be with him. I called my mom. She was over in less than fifteen minutes to watch the babies for us. We left as soon as she arrived.

I can’t describe the lump in my throat the moment we pulled into the driveway. Brian was quiet. There were three nurses and the hospice coordinator (I think that’s who she was). The three ladies were tearfully emptying bottles of medication, preparing them for safe disposal. The coordinator lady was talking to Grandma. Mom was lying in her bed. She looked different. I wasn’t prepared for that. I wasn’t prepared to see her. She had been gone for a little over an hour by the time we arrived.
The TV was blaring. It was the Olympics. Brian and I immediately went to turn the TV off.
I was sent to the store to buy cat litter (used to absorb and neutralize medications for responsible disposal) and while I was in the store, I realized it was the first time I had ever purchased cat litter. I don’t have cats. These people will probably think I have a cat. They have no idea what’s really happening. Its interesting the things that run through your mind sometimes.
I paid for the litter and went right back to the house. There she was, still. Of course she was. Where would she go? I kept wanting to be very quiet, like she was sleeping or something. I kept catching myself almost saying, “Shhh.” But there was no reason to whisper.
The coordinator lady left and eventually the three nurses left and it was just Grandma, Brian and me. And of course Mom. It was so surreal. No more nurses. It was too quiet.
We were waiting to make the call to have her picked up. We didn’t want her taken away before Brian’s sister could get there. She and her husband were driving as fast as safely possible from Santa Barbara. They were just visiting for the weekend. A quick trip before their baby comes. Brian’s sister is 37 (now 38-ish?) weeks pregnant. Mom was not supposed to die yet. We thought there would be more time. My God, there was supposed to be more time. She was supposed to at least meet her grandson…her daughter’s first child.

They came to take her away after Brian’s sister and her husband made it there and everyone was able to see her one last time.
The guys were creepy to me. Very nice, but creepy. I think one of them had eyeliner on. I think.

Brian drove me home and packed a bag so he could stay at the house with Grandma for the night. I knew none of us would really get any sleep.
The days that followed were up and down. Brian went with his sister, her husband and Grandma to the funeral home and church to make arrangements. There was so much to decide. So many choices to make. He said its like planning a wedding except #1 you have no time and #2 it totally sucks. Yes, it does totally suck.
He is so grateful for his sister, as she has been the one with the reigns throughout this whole process. There is comfort in having a sibling while having to bury a parent. It feels less ‘alone’.

We spent the next few days talking. Preparing. Reflecting. Processing. Is your suit clean? How do you feel? What do we do with the babies? I need new shoes, nothing fits. Are you OK? What is the weather going to be like? Should we carpool? Focusing mostly on logistics helped push things along, I guess.
Its strange how even though it wasn’t a surprise – she was sick – it is devastating to have her gone. She is no longer here. Its hard to really grasp. I have her cell number in my phone. I recently cleared my text messages and her last text messages to me were erased in the process. Why did I erase them!
I don’t know what the week would have been like without the babies. Our house was still filled with joy and giggles because of these wonderful babies. I thank the Lord for these babies. They are comforting my husband and they don’t even know it. They just love him and kiss him and snuggle him. Thank God for these babies. He is comforting my husband’s aching hearth through these blessed babies. What gifts these children are.

Friday. The day of the funeral came and I don’t know that we slept too well the night before. There was a lot of anxiety, knowing that the funeral was coming.
I have only been to a Catholic church several times before, and each time was for a wedding. This was Brian’s childhood church and school and the place brought back so many memories for him. There were so many people from his childhood. This was, I am sure, both pleasant and painful for him, under the circumstances. The funeral was beautiful. It was wonderful that so many people who loved and respected her – friends, family, colleagues, students, etc. – were there to show their love for her. A lot of people loved her. I know that provided some comfort for Brian. It was nice to hear the wonderful things people said about her. She was their friend, mentor, teacher…She was many things to many people.

The car ride to the graveside service was long. Lots of traffic and emotions quickly welling up. My throat and chest were tight. I offered to drive but Brian said he was fine. I think he needed something to focus on so driving was good.

The graveside service turned out to be tougher that expected. The service itself was actually short and very nice. People stood up and gave their quick tributes to Mom as we stared at her casket. It was a pearly pink. Really beautiful. Brian’s sister did a good job choosing it. It looked like something Mom would like.
The hardest part was walking away after the service. One last touch to her casket. It would be the last time. It seemed so final. After that day, it would be in the ground and we would never see her again. I worried about Brian. I wanted to give him space as he said ‘goodbye’ but I still wanted to be by his side to support him. As he walked away from her casket, I thought he would surely lose it. I think he was using everything he had to keep it together. I didn’t want to look at his face. I wanted to give him that privacy in case he wanted it.
I actually lost it when we drove away. We could see her casket as we drove out. It felt like were leaving her there all by herself. I didn’t want her to be alone in the middle of that field. Of course I knew better. It was only her body. But it still felt wrong to drive off without her. I didn’t want her to feel lonely.

We drove home as fast as possible to change and pick up the babies to quickly take them to the gathering at Grandma’s house. We knew it would be hard – right around their bedtime – but it was important to bring the babies. Mom would want them there to cheer everyone up.
Thankfully, my sister had them all dressed and ready to go. Thank God for Pam. The babies were well received at the house and although Zachary had a mini-meltdown (he doesn’t like crowds) they did great. They were wonderful. They bring so much joy. My parents agreed to take them for the night, which allowed us to spend some time with closest friends into the night.
It was as if we didn’t want the night to end. Because if we went to bed, then tomorrow would come. And tomorrow is quieter. No crowds of people to keep things moving and busy. It would be quiet enough for the heaviness to really sink in. They say that it’s the days and weeks after the funeral that get really tough. Everyone has gone home and moved on with their lives. The world goes back to business as usual. We are in that zone right now and I feel like I am waiting for the other shoe to drop. I am watching Brian as he tries to process the reality of it all. He spends a lot of his time being quiet and keeping busy. I assume he is thinking about things. Or maybe thinking about nothing and trying to keep it that way. Either way, I know that he is hurting and I am hurting for him. I also hurt for his sister who is days away from giving birth to her first child. She has to somehow allow herself to grieve the loss of her mother as she also gets into gear to welcome a new life into hers.
It all seems so unfair. Although there would be no good time to be sick and die, it seemed that we somehow thought there would be a more appropriate time. Not this soon. Not yet. She was supposed make it while we waited for a miracle. A cure would suddenly be discovered and make it all right. She wasn’t supposed to actually die.
But the mercy in all of this is that she is no longer in pain. In the end she struggled and thankfully was prescribed morphine as needed to help ease the pain. I wish I knew what she was thinking in those final moments. If she was somehow relieved to know that it was finally ok to let go. That is what I hope. I hope that she felt at ease knowing that her suffering would soon end and that she touched many people. We are proud of her for doing the best she could to fight. She gave her very best. We are grateful that she got to hold our babies and even kiss them when they were in the NICU and right after they came home. I know it hurt her very deeply that she would not be able to be around for them like she had dreamed.
She always told me in her text messages to kiss their toes for her. I’ll continue to kiss them for her everyday. At least until they stop letting me. Hopefully, they keep letting me do it for a long time.

Information

I've received many inquiries about funeral services and about where to send flowers/donations. Thank you so much for your kindness.

Funeral services will be held Friday, August 29 at 2:00pm:
Our Lady of Lourdes Catholic Church
10321 Tujunga Canyon Blvd
Tujunga, CA 91042-1821

Funeral services will be followed by a graveside memorial at Oakdale Memorial Park, Glendora, CA.

Flowers may be sent (in the name of Susan Spayth) to Oakdale Memorial Park on Friday morning:
Oakdale Memorial Park
1401 South Grand Ave.
Glendora, CA 91740-6406
626-691-2000

You may also send donations on Susan's behalf, made to ALSALA (ALS Association of Los Angeles) in lieu of flowers and to help find a cure for ALS.

To send a donation online and to read a brief overview of Susan's life and illness, please visit Susan's ALS Association tribute website by clicking HERE.

To send a donation by mail, make checks payable to:

The ALS Association Greater Los Angeles Chapter

Mail to:
The ALS Association Greater Los Angeles Chapter Development Department
28720 Roadside Dr. Suite 200
Agoura Hills, CA 91301.

Your loving e-mails, comments and phone messages are very much appreciated. Thanks to all of you for your kindness and for reaching out.

Susan Spayth 1947-2008

Brian OK-ED me to post this update tonight.
This one's tough to type. My fingers are heavy and my eyes are burning with tears. I can't keep my eyes clear enough to see the words. I feel like I don't know how to type this out.

As you may know from previous posts, Brian’s Mom has been battling with ALS. Her fight ended this afternoon at around 4:00pm. Although we are grieving and incredibly sad, we are grateful that she was able to be in her own home in the end and that she is no longer suffering.

Thanks to all of you who have sent e-mails, prayers, positive thoughts, etc over this past year. It has meant so much to Brian.

I want it to make sense

I have been really busy. Sorry for the lack of posting and the lack of updates/pictures. I am just doing a lot.
Both of our cribs were recalled so we had to take them apart, run out to buy another one and now we are waiting for the vouchers from the manufacturer. We currently have two babies sleeping in one crib and one in a pack ‘n play – hardly ideal, but an acceptable temporary solution.
And the de-tox? Well, lets say that I’ve fallen off the wagon too many times and the wagon finally decided to just leave without me. Its going that well. I had Mexican food for dinner tonight.
Stress and eating have always gone hand and hand for me and that’s a completely different issue entirely.

I’ve got a cold – IN JULY – but I have to say that this is the first time I’ve been sick since I was pregnant. That means I’ve been healthy-ish for the first months of their life and I am grateful for this. I cannot imagine doing the sleep-deprived thing while feeling crappy with a cold. It felt crappy enough! I was really hoping, though, when the first signs of this cold appeared – sore throat – that I was NOT getting sick but rather just a temporary soreness as result of sleeping with my mouth open or something like that. Nice visual, eh? Unfortunately, it’s a real cold and I’m sniffly and headachy and tired but I will be just fine.

The window for the six month post has come and gone and now I am working on making it a six/seven month post. I can’t seem to get into a groove to type it out because my brain is in another place. I can’t think of anything else besides what is on my mind so I’ll just unload.

As I have mentioned before, this blog is just a thin slice of our lives. I try to keep it pretty positive while at the same time not sugar coating when I do share the un-fun stuff. But I’ve kept this HUGE part from the blog for many reasons.

Brian has touched on the topic of his Mom’s condition before. She has Amyotrophic Lateral Sclerosis - or A.L.S. (AKA Lou Gehrig's Disease). Its something that I have not spoken about here because I have wanted to protect the privacy of his Mom and of the family. I have followed Brian’s lead about how much to share and he has recently given me the green light to talk about it myself. I am going there today, because I just don’t know what else to do. We need prayers. She needs prayers.

The bottom line is this. Her condition has worsened VERY rapidly. She can’t walk. She can’t stand. She can’t talk. She can’t swallow. She can’t hold her head up, so she can’t even see anyone’s faces or watch TV. She has no use of her body, except for some limited use of her right hand. She has been on a feeding tube for months. She has 24 hour care. She has no way of communicating except for with a whiteboard and dry erase marker, but she is losing use of her hand – the last thing she’s got left - so soon she’ll have no other means of communication.

She is dying. I hate to use the “D” word, but that is the reality. She has had tons of medications and seen the best doctors. But there is no cure for ALS. Everything shuts down and all she can do is ‘be’ inside her failing body. Its heart wrenching. Its horrible.

ALS is a horrifying, humiliating, disgusting, ugly disease. It is a thief. It has stolen from this family. It has stolen opportunities for conversations that will now never be had. It has stolen dreams of a future with grandchildren. It has stolen all of the potential, right before everyone’s eyes. We watch it come every day and take everything, piece by piece.
It happened over time, yet so quickly…
One day, her speech got weird.
Then she started experiencing numbness.
Later, swallowing became difficult...and then impossible.
Then walking became impossible.
Then moving at all became a part of the past.
With each piece stolen, also goes much of the hope.
It is cruel. It would almost be better if she weren’t aware. But she is completely aware of everything shutting down. Shutting. Down.
Of every part of her body that stops working.
Of each door closing. And locking.

This has been such a year. To give you perspective, I got pregnant, Brian lost his job, We found out it was a triplet pregnancy (HOLY CRAP!), I was put on bedrest, his mom was getting sicker, his mom got diagnosed, I went into the hospital, I had the babies, They were in NICU, Alexis got very sick, Brian started a new job, Babies came home, we were sleepless zombies…we are out of the baby fog now, but Brian’s Mom condition has worsened so much more quickly than we could have conceived. When the babies were born, Brian’s mom was able to drive herself to the NICU to see them for the first time. That was December. Today, she can no longer move her body, much less drive a car or hold a baby. She hasn’t been able to hold a baby in months.

I guess I don’t really know my point in posting this except that I just needed to type it out. And that I wanted you to understand. And that I want you to pray.

My heart is breaking every day. It is such a strange sensation to feel two extremes inside my heart. To feel such joy with the new life that these babies have brought to our lives, but to feel the gut-wrenching agony over something so out of our control as this cruel terminal disease and the reality of what it means. It hurts me to see my husband, who has carried ME since the beginning of this pregnancy/childbirth/post-partum journey, carry this heavy weight in his heart. The feeling of guilt that he can’t do enough. Trying to balance his obligation as a parent to three needy little babies and his obligation as a son to a parent who is battling with the helplessness that comes with this disease.

I believe in the Grace of God. I know that God is always working. But right now, I am just mad. I am so angry. I want this to make sense. Its not fair. I don’t even want to understand. I just want it to stop. I want it to get better NOW.

Every day that I think I am having a hard day, alone with these three babies, I remember that her day is much more difficult.
Who am I to complain about scrubbing the toilets? Having crusty peas/apples/formula on my neck? The weather being too hot? Not showering because I didn’t have time? Something sticky/crunchy on the floor? Having my thumbs be sore from changing over 700 diapers a month? Being awoken by someone crying? A messy/stinky diaper? A sink full of dishes?
These are all things for me to be grateful for.
We don’t spend our days lamenting. We try and remain hopeful but this is a grievous process for all involved, especially for Brian’s Mom.

I ask that you send your prayers for Brian’s Mom. Please pray for peace inside of her grieving heart. Please pray that she finds comfort. Please pray whatever God inspires you to pray.

Brian's Family

Dad here. Recently many of my friends have asked how my mom and grandma are doing. I wasn’t sure how comfortable I felt writing this on the blog. Well, obviously you know how I decided. I’ll start by talking about my mom. The following is something my sister wrote; I couldn’t have said it any better.

Mom started to have symptoms in August of '06. She was starting to slur her words a bit... After a couple of weeks she decided to go to the emergency room because she thought she may have had a stroke. It was decided that she didn't have a stroke but they really didn't know what happened. So more doctors visits and more tests... still no answers. At some point during the year mom's speech got better and she was able to go back to work. She finished out the school year. But things seemed to kick back into gear and her speech was getting bad again. She was sent to USC to hopefully figure out what was going on. Sadly she was officially diagnosed Sept. 20, 2007 with ALS, Amyotrophic Lateral Sclerosis or commonly known as "Lou Gehrig's disease" Unfortunately since mom's diagnosis 4 months ago she has been progressively getting worse. She has weakness in her in left leg and her speech has gotten worse. She has a lot of pain in her left arm, which isn't typical of ALS. We think this is from a fall she had in August. She is going to see an orthopedist to hopefully fix this for her. Her diet has to be modified to softer food and thicker liquids so she doesn't choke or aspirate. She can still drive and be on the computer and text message. Mom goes to an ALS Clinic at Cedars Sinai about every three months. It's a one stop shop where all the doctors and therapists come together on Wednesdays to have this clinic. There are only a few of its kind and we are very thankful for all their hard work and support. Mom is trying to stay strong and positive. We remain hopeful and will never give up! Because, miracles happen when you expect them!

Apparently “coping skills” was one of the classes I missed growing up; I have definitely had my rough days dealing with this. At times I can seem stoic, or give the impression that this situation does not bother me. This is far from the truth. This is the only way I know how to deal with this---maybe it isn’t the right way---but it is the only way I know. Simply put, I have to keep everything together right now. I cannot allow myself to break down over anything. This is not an option. I have been told by many people that sooner or later I am going to crack. OK, sure, they are probably right. However, slowing down, or taking time off of work won’t feed my babies. I will take time when the time is right, and right now is not the right time.



So, the latest information on my mom (again, language borrowed from my sister):


The time has come for my mom to get a G-tube (feeding tube). She has been having more difficulty swallowing, has been losing weight and her breathing capacity has dropped below 50%. She had the G-tube put in on March 6th at 2:30. The procedure took about 15 or 20 minutes. Mom will still be able to still eat normal food for pleasure but her main nutrients will come from the G-tube. She can even put her medicine in it. Unfortunately the tube is needed but fortunately she is going to get it and will keep mom stronger longer!

OK, on to my grandma (she will be 90 this year). After a LONG day at Cedars with my mom, my grandma returned home exhausted. While walking in the garage she tripped, fell, and broke her hip and her leg (this was the family emergency Cindy wrote about in an earlier post). She had to be rushed to the emergency room. She had surgery shortly after, and has made a fast recovery. Initially the doctors thought she would be in the hospital for a month or two, but it looks like she may be coming home this week. She is definitely a strong person!

To add to everything we are moving this month (as Cindy mentioned before). We found a nice house near-by and should be all moved in by the first of the month. I have been moving our stuff little by little each night after work in attempt to get everything I can (all non-essential items) over to the new place. I am trying to do as much as I can each day to make the final days of moving as easy as possible.

I will leave with some baby cuteness:

Sister and Zach

Feeding time. In order A, B, C.

My boys.

Chubby Jackson. Seriously, he is almost twice the size of Alexis! He is a bruiser.