Sunday, November 21, 2004

Soon

An update is coming (actually seven that have been backwritten to be exact) soon. We have not been in places that have given me constant broadband connection and I just have no patience right now to deal with dial-up waiting times. Just please know I have read your comments and have felt your thoughts being sent our way, thank you. I would love to be able to tell you that things are better, that we are doing great and handling all this well, but that would be a boldface lie. We are struggling to breathe right now and to be able to take steps in healing just seems like it takes too much energy. Strength doesn't exist, not for any of us, not now. I will update soon.

Sunday, November 14, 2004

Wishes

I would like to take a moment here and thank you all for your support of my breakdown concerning God. I am not apologizing, nothing has changed since I posted it, I still feel the exact same way. I know Mom would be saddened by my words, but she was a woman of amazing faith. I am sure that she can also understand what I am feeling. Perhaps she felt this way at times as well and just didn’t share it. Either way, God is still hated within my heart and truthfully, I can’t see that changing anytime soon. I will try to keep an open mind on this one (and will go back and read over Job again at the advice of two very kind readers).

In less than one hour my husband, my child, and I will take a flight into DFW International. The airport is quiet, Alex and I are lost in our individual thoughts and Emily is sleeping in her stroller. We are meeting family in Dallas, connecting straight into Logan to be greeted by family friends. My father left this morning, he accompanied my mother in flight to the town she had a love/hate relationship with. When I spoke to him late last night, he cried and through large sobs told me that this was the hardest thing he has ever done. Coming from the man who has had to say goodbye to two daughters, close friends, and numerous other family members, I know he is hurting beyond any words that I could write here.

We have had to make some very difficult decisions regarding my mother’s after death wishes. She planned her entire funeral, made arrangements far in advance, made her wishes very clear. She wanted a large funeral, one where people could laugh and remember. She wanted to be buried next to my sister. She wanted a stone with the phrase "Gaudeamus igitur" ("Therefore, let us rejoice") written upon it to remind us all to be glad with her, to know she was filled with joy where she is now.

After many tears we have decided there will be none of that. It is incredibly difficult to go against my mother’s wishes. I don’t think we started out wanting to do that, it just happened. First it was with the autopsy choice. Some of us said yes, some of us said no (the yes’s won), some of us didn’t have any input. Then it was with the burial plans. Then it was with the service schedule, how it just didn’t seem to be easy to coordinate a time nor a place. Some of us stood firm with her desire to be buried near my sister, some said please take her to the ocean because she wanted to go to the ocean, some had no input. Finally, the ocean has won. In the end, it was my father who stated that he wanted the same thing for himself and that he believed she had true peace when she was there. We will give her the last thing we can, the last desire we can fulfill for her, it will be. She will be cremated and we will take her to her favorite place on this earth: Hilton Head, South Carolina. She will get her stone in Massachusetts, and she will forever remind us to be joyful in her own way.

As she looks down upon us today, I hope she understands and I hope she knows why. Her plans for services will be put to use, just in a slightly different manner. We will hold a memorial service at a later date using her plans, holding everything just as she wanted it. Our hearts are bleeding, and we don’t want to be making these choices. We had so much time to talk to her, why didn’t we ask these things? Why didn’t we ask if she would like this? Why didn’t it cross our mind to ask her so we would be able to know for certain now?

My father flew with her to Massachusetts. One of her last wishes included being given the final blessing from their Pastor. This was not possible at the time and so this morning at 11:12a.m, she will receive her final blessing from the senior Pastor of her beloved church. After it is given and all is finished, my father will allow them to do what they need to do what they need to do and we will wait. We will wait together as a family, holding each other as we receive friends and family at the reception area and in the days to come. On Wednesday, we will drive as a family to Hilton Head and spend some private time remembering and attempting to find some healing in all this shattered pain.

This is no family vacation, there will be no happy photos taken, no postcards sent back home to alert everyone of Emily’s first trip to Boston and to the coast. She will never know her grandmother and thankfully will never remember this time in her life, the time when her mother just wants to curl up and die. She will never remember the day her mother sat on the bathroom floor contemplating joining her mother in Heaven. She will never remember her mother screaming to God on the night of November 8th, screaming to just take her as well and get it over with, there was nothing here left to live for. She will never remember the endless tears, the countless questions, the shattered glass from the dozens of glasses her mother threw during an angry fit of grief. Thankfully, she is too young, too happy, too loved to remember this pain.

I will do my best to update later today, at least a short note, if nothing else.

Friday, November 12, 2004

God

An Open Letter to God:

God,

I hate you.

Harsh words coming from a devout Christian, I know it. However, you have not shown me that you are a merciful God. Instead you have shown me that you aren’t in the business of healing broken people, just in the business of standing back as it gets worse. You haven’t stepped in when we needed you to do so. Instead, you stood back and advised us to have some faith.

Fuck faith.

I had faith when you allowed my sister to perish in a horrible tragedy.
I had faith when you allowed my sister to die in pain, leaving us behind.
I had faith when you allowed my mother to suffer thru endless rounds of chemotherapy.
I had faith when you allowed it to seem as if she was going to improve.
I had faith when you allowed her to face her own demise with grace.
I had faith when you allowed her to stay with us for so long.

Then you allowed her to have pain. You allowed her to lose her abilities. You allowed her to linger on when she couldn’t speak or recognize us. You allowed her to have fear and the look of terror in her eyes.

My mother was a wonderful example of your love. She believed in your words, trusted you with her life (and her death), and knew that all things have a purpose. She was a devoted Christian even when she went thru the fires’ time and time again. She never lost her faith.

We had faith, God. We had faith in YOU, holding tight to the promise you have given us, that you will not forsake us. It certainly feels like you have forsaken us now. Where were you when she begged you to make the pain stop? Where were you when we begged you to bring her peace? Where were you when we begged you not take her from us? Where were you when we prayed for her illness to be treatable? Where were you, God?

Merciful God we serve. Thanks so much for restoring our faith, mending our hearts, making everything right. Thanks. Until further notice, I need a break from you. I need to make sure I still want to serve a God who gives such mercy and compassion. If it weren’t for my sister and my mother being with you, I would walk away now. Be glad you have them by your side.
It is the only thing keeping me from becoming an atheist.

Signed,
Shelly

Hurting

Written Wednesday, November 10th.

I have tried to type this several times and each time the words don’t make sense. I have given up on making it all come together and have decided instead to just type. It may not be clear to you or it might be very clear, depending upon who you are or how well you know my Mom.
It has been just over two days since she left us. Two incredibly long and painful days. It has been two days since I heard her breathing, kissed her, or stroked her arm. It has been two days since she went to be with her Angels. Two days filled with uncontrollable tears, amazing joy, and a sorrow that makes your body hurt.

I haven’t spoken much on here what transpired the last week of my Mom’s life, but over time, I would like to talk about it. There are so many things that happened . . . I just have to have some time to understand all of them. Tonight, I will begin to share some of the events, as I can. I am sure a number of them will bring chills to your soul, some may make you laugh, and finally, some will make you weep harder than you thought you could. At least, this is how it is has been for me this past week.

Mom stopped knowing who we were, stopped responding to our voices late on Sunday afternoon. She started sleeping deeply with very labored breathing. We didn’t stop talking to her, crying with her, laughing at her. We believed in our hearts that she could still hear us and maybe, maybe she was watching us from up above already. She couldn’t speak, couldn’t move her body on her own, no longer could focus her eyes or track us, but we knew she was happy . . . wherever she was.

Due to the partial stroke she had a few weeks ago, her arm required constant elevation. She couldn’t do it herself and often it slipped from the pillow. We would gently place it back on the pillow, kiss her forehead and turn to walk away. We would hear her stir and would turn back to see her. She would be smiling at us, as if to say thank you. We hope this means she knew we were with her, watching out for her, and loving her more deeply than ever before, if that was even a possibility.

Three hours before she passed away, she had a massive grand mal seizure. As we held her to ensure she didn’t injure herself, I felt her body relax and I figured it was because the seizure was ending. She became limp, lifeless and yet, she was still breathing. It was at the moment that I realized she was gone already. She left us. The Angels who called her name had waited long enough, she went to be with them. I am sure she was watching us as we waited, wondering how much longer her battered body would continue to fight. We covered her in kisses, whispered love into her ears, rubbed lotion upon her broken and bleeding skin. We sang to her. We read her passages from Walden and from Whitman. We held her hands, but they were so cold.

We told her it was okay to leave, okay to let go, okay to go with Sara. Her breathing became even more labored, her blood pressure started to drop, her heart rate became increasingly less stabilized. We wondered if she was hanging on, if she was going to be coming back to us. We waited and we hoped. We waited and we prayed. We waited and we sobbed. Just when we relaxed enough to let ourselves believe she wasn’t leaving us yet . . . she stirred. We raced to her side, her breathing changed, we knew it was coming. She went from labored, ragged breaths to calm, steady breathing. We each touched her. She was so afraid of being alone. We wanted her to know we were all there, all touching her and assuring her it was okay to go. She took one sigh and then there was silence. I thought she was gone. Quietly I said "Mom." She took a large breath in and then there were two short sighs and then she was gone. I knew she was gone, there was no point in asking.

This is all I can say for now. The rest just hurts too much.

Monday, November 08, 2004

Found Her Peace

For weeks, we have been pleading with God to help Mom find her peace. This morning, November 8th, 2004 at 11:12, my mother took her final breath and jumped into the arms of God. She leaped over the unknown, grabbed onto the Angel that has so patiently been calling her name, and she slipped from our tight grasp. With a sigh, a pause, and two breaths she was gone, off to be with her Sara. It was peaceful and calm, just as we had prayed. She was content at what she was seeing, content enough to leave us and go there for herself.

We miss her more than words can ever explain here. We have been missing her for days. She left days ago, at least the Shar we knew left days ago. Today, today was just letting go of the last piece of her, and letting go of the other parts that have been gone for days. She stopped speaking two days ago. I never thought I would say I miss her talking, but I do. We lost her when she stopped responding to our voices. We lost her again when she stopped responding to painful stimuli. We lost her again when she no longer startled with loud noises. This should be easy, we have lost her so many times. However, it just hurts that much more right now.

I have written this post 10 times over. Each time I delete and start over, uncertain of where to begin or even where to end. My tears seem to blind me at times, and my fingers stop typing to allow me a moment to absorb the silence. Silence is not so golden. Especially not when you are used to a space filled with noise making medical equipment that is suddenly gone. Then the silence is so loud you can’t hear your heart crying anymore. You take a breath and hear a loud wailing coming from somewhere near you. It is only then that you realize this unhuman sound is coming from deep within you, it is the sound of your world crashing. That’s where I am right now.
More postings to follow, I have much more to say. For now, I just wanted to inform those of you who may not have aware yet. I will post arrangements as they are made and at some point, I will back to type my posting from the last two days.

Saturday, November 06, 2004

Sorrow

Her wake time is short, her pain is low, but her terror is elevated to a point we can’t help any longer. This is where she must walk alone, walk to those who have gone before her, grab onto them while releasing her grip from us. She is scared and we are terrified. Our hearts are breaking tonight.

She speaks of those who surround her, those we can’t see. She hears them speak, searches for them, begs us to find her child, her Sara. We can’t help her, she knows this and yet she can’t stop pleading with us. We assure her Sara will come to her when it is time, to stay calm and relax, to trust us. She is unable to trust us, we are unable to trust the words we hear coming out of our mouths.

Then the silence starts. Hours of unbearable silence with the only sound coming from within her chest . . . gurgling, raspy sound of sorts. We sit near her, holding vigil, waiting for her to wake, or to leave us. We wait for true silence to occur, often beg for it. She is in need of the silence. Her body is weak, her mind is growing tired, her time here is complete. Then she awakens only to have five minutes of clarity and 10 minutes of panic. It is a pattern that continues over and over thru the days and nights. It is rattling to your soul and shakes you to your very core.

This is only one nightmare of uncertainty. We make promises and hold her tightly, all the while silently pleading with God to help us out on this one. He turns a deaf ear, allows her to suffer more, allows her to linger unable to be herself. She begs for us to help her, and we beg God to help us. It continues.

She asks for things unusual for her: a watch, a necklace, a shirt. She tells us she needs to know the time, and she needs to be somewhere. We bring her the watch and cry silent tears because we know she has lost her vision. We offer to put the necklace on her, she declines and asks just to have it placed near her. We oblige. She asks us to leave the shirt and slowly we see her small fingers reach for it. With that she smiles and sighs, we think for the moment she is at peace. We are all well aware it will not last. It never does. How we pray for the moment that she finds that peace . . . how wonderful that will be for her.

Her blood pressure continues to fall and rise several times throughout the day. Her responsiveness is gauged on several factors, and she is near failing on all of those. Her eyes no longer see us, and she doesn’t track at all. She fights for each and every breath she takes, regardless of the amount of oxygen she is receiving. We watch in fear as she struggles to grab one breath of unobstructed air, helpless to do anything but plead with God to end this. We hold on to the medical knowledge that this will not be much longer, that she won’t be like this much longer, that she will find her peace and leave us to deal with our overwhelming sorrow.

Thursday, November 04, 2004

Prepare

Modern day medicine tells us that when death is near several things will occur. Organs will begin to fail and shut down, levels of consciousness will deepen, just to name a few. Mom has consistently proven over and over again that she is NOT in the control group. If it is to be the standard, she will go against it. Only two exceptions to this rule are continuous currently: her breathing and her ability to regulate her body temperature.

She alternates her breathing. During "good" periods, she can grab onto a breath of air and not struggle. During the "bad" periods, she gets scared and that just makes it ten times worse. During her deep sleep, she is doing a bit of Cheyne-Stokes. We were ready for this, prepared we thought.
Nothing can prepare you for the sound of her choking and not being able to help. Nothing can prepare you for the look of terror you will see in her eyes as you place a mask over her mouth to help suction the mucous from her lungs because she is no longer able to clear her own airway. Nothing will prepare you for how loud the silence will be as you wait for her to grab the next breath. Nothing can prepare you for this.

We had a power outage today for several hours. That has only caused havoc for her. Because she is in need of medications round the clock, oxygen round the clock, and we are monitoring her rates round the clock, having no electricity proved to be a very large challenge. Without the aid of friends here who pitched in and made sure we had back-up electric for her, we wouldn’t have been able to keep her at home this afternoon. However, the electric has since come back on, she is resting in the arms of my father, and for now, it is calm. I would say for now the world is right, but there is not one thing right with this, not one at all.

Her awake time is drastically shorter than it was even yesterday. Her temperature remains high and ravages her body with sudden chills frequently. Her legs are blue, her hands cold. Her ability to hold on to what we are saying is nonexistent. Patience is something we have all learned to not take for granted. She speaks to the angels, waves to the people we can’t see, and tells us about babies and snow. We know these are all signs pointing to the end.

Anyone who knows my mother, knows that she lives for the sound of music. It moves her from within, she absorbs each song she hears, her musical taste can only be described as eclectic. Growing up, she was always singing parts of songs while we working together. She might not know the whole song, but she always remembered at least a verse, usually one that she could apply somewhere else. She can’t carry a tune, but she has the most beautiful voice I have ever heard. It makes my heart go pitter-patter, makes me realize how lucky I am, and makes me want to sing to the heavens along with her.

Every memory I have of my childhood can be linked back to music somehow. It only seems fitting that in my mother’s final days, music plays a major role in her contentment levels. Several members of our family are here with us, supporting, loving, praising, and weeping. One thing we can’t escape is recounting one of the most beautiful moments we all have shared . . . my parent’s 35th wedding anniversary. It was intended to be a small, intimate dinner. Due to overwhelming love for my parents, it turned into a very large party. In the middle of the chaos, we heard my father clear his throat and begin to sing a moving melody to her. She sat with tears in her eyes with a smile that beamed.

". . . When the years have done irreparable harm
I can see us walking slowly arm in arm,
Just like that couple on the corner do.
Cause I will always be in love with you
When I look in your eyes, I still see that spark
Until the shadows fall, until the room grows dark.
Then when I leave this earth,
I'll be with the angels standing.
I'll be out there waiting for my true companion.
Just for my true companion . . ."

This song has proved to be true as we witness the love my father has for my mother. He is her world. She is his. Together, they make me believe in forever love. He sits with her now, holding her, caressing her head, whispering his love for her into her ear as she sleeps. He tells her of the times they have shared - the good, the bad, the ugly. The love they have for each other is pure and amazing.

Tuesday, November 02, 2004

Journey

Her body is telling us our time with her is drawing to an end. Her breathing becomes less routine and appears more out of necessity rather than from habit. She is weak and tires after a few breathless words. The smile remains slightly larger at times, barely curled at other times. Her responses are delayed and sometimes she just can’t respond. We touch her, she doesn’t respond with the same heightened sense of awareness as she had just 24 hours ago. Her hearing is still intact. We know this because 75% of the time she opens her eyes in response to our voices. The other 25% she is in a very deep sleep, unable to break free from the wonderful places I am sure she is seeing right now.

She sleeps soundly but this comes after a few scary breathing moments. She speaks, but it wears her out. She gasps for breath and fails. It takes a moment to relax again and then she is once again resting. Her cat, Orange, has not once left her. He remains curled up under her arm, purring loudly, ever so often reaching up to pat her face. He knows he is losing his best friend. He, like all of us, doesn’t want to leave her side, doesn’t want to give her the chance to leave us without our knowledge.

Music is a constant here today. She seems soothed by the continuing lulling. We have a wide variety playing (Tomlin, Vivaldi, Casting Crown’s, Springsteen, etc.). She loves them all. We read to her, sit with her, cry with her, and most of all, we laugh at thoughts of her. Mom’s pain level is well controlled, she replies no when we ask if she needs an extra dose of pain medication. She isn’t following us with her eyes. She hasn’t done this since early afternoon. This is part of the dying process that someone of her advanced disease goes thru. I can only hold my breath and pray she finds her peace soon.
We are certain she will.

Light

The light at the end of the tunnel comes shortly before death, metaphorically and perhaps, quite literally as well. I believe in my heart that Mom is seeing and feeling that light as I type this. Her day has been long. It has steadily become a much clearer picture of the end as the afternoon has turned into evening. As anyone who knows Mom can attest, evening and nightfall times are not good for her. Today, proves much different.

There is no agitation. There is no fighting as the day turns to dark. She is comfortable, a term she hates, but it applies. She speaks very little, but her smile is frequent. She startles when we kiss her, beyond that she is calm. She does ask for certain things to be brought to her side, has asked to see certain people, looks forward to spending time with others.

She asked for my daughter to be brought to her. In past days this has not proven to be advantageous for Mom, it tends to upset her at Emily being frightened. Tonight, it was if Emily understood everything. We brought her to Mom, quietly whispered to her that we were here. Her eyes fluttered open, she made a motion to have Emily brought closer. Emily was still has my mother kissed her hand and told her she loved her. Shortly after, they were both napping together side by side, both finally comfortable with each other. It is a moment in time that will never leave my memory.

Her decline started early this morning. In the beginning, she seemed scared and then fear was taken over by acceptance. Anyone who knows my Mom knows she has long accepted her fate, but this was different. This was accepting that the path could not be backtracked upon, accepting that she must go and hold our places, accepting that we will never, ever be the same again. Someone wrote that she was forever changed by Mom. That is said perfectly, she has forever changed us. It doesn’t matter if you were her daughter, sister, husband, or a stranger upon the street (she knew NO strangers), your life was forever changed if you knew her for one moment.

I will write more at some later time. Right now, I need time to hold her hand and tell her that I have been forever changed by her love.

(Erica, I tried to leave a note for you. We opened it, she LOVES it. I did put it on the repeat track for her, she seems to be happy with music today and that song fits so well, thank you for finding it for her. A day or so ago, she heard it and began to speak of it, I honestly couldn’t locate it. I am glad you could, she really does enjoy it.)