One Month

One month ago today, my sister and I held our mom's hand and watched her as she struggled to breathe her last few breaths on this earth.

This past month has been surreal to say the least....the emotions have been overwhelming...

I still have a lump in my throat the size of Texas...and a cramp in my stomach that won't go away.  I can laugh, but it doesn't feel the same...and smiling is hard, most of the time.  There have been a couple of times that I have caught my reflection while watching TV on my iPad....and I see her face.

I've returned to normal things, and some times they seem normal...and other times they do not.  I'm not sure that I'm ready for normal, but I don't want to stay frozen...because, well, she wouldn't want for me to stay frozen...and there is still a lot to do.  So, it's one foot in front of the other...and take the moment as it comes.

The worst part about work is that I'm in the area that she last lived....and that is just hard.  I look out the window and I think of her...I drive down the highways and streets with tears in my eyes, sometimes streaming down my face.

It was weird on Mother's Day to not go have brunch with her...it was weird to not go have brunch with her this past weekend.  Shan and I loved to do brunch with her.  

I thought that once time did come, I wouldn't miss the calls about her health and needs, I wouldn't miss making those decisions....but after 3 years, it becomes a part of you...it is partly how you identify yourself.  But on the other hand, I'm glad that she is not living like that anymore.  It's a weird deal.

It was weird, she could be having the worst day, but if Shan and I walked into the room, her face would light up...she would smile and laugh with us....and yes, sometimes at us.  

I still feel numb most days....getting out of bed seems impossible most days and going to sleep is hard some days.  I constantly see her face...thankfully how she looked before she got sick...and I constantly hear her laugh.  

I've been blessed to have known her for 29 years....I just wish that it was much, much longer.

This has been the longest month I think that I have ever experienced...

April 28, 2012

I woke up sad on Saturday, April 28, 2012.  I didn't know for sure why, but I woke up and was just sad.  Then I remembered, it was my last night to serve in the children's ministry for the summer.  The previous week had been heavy.
Mom had a rough week.  We had signed her up for an extra care benefit that she qualified for.  After all of that, I had decided to take a break from my volunteer responsibilities so I could spend more time with family and with her.   I had been serving in the Children's ministry for just over 6 years.  After spending that much time in a group, it becomes a part of you - they become a part of your family.  It was a tough decision, but the right one.  I know it was only for 3 months, but I was going to miss this group for those three months.  That had to be why I was sad.  I accepted it, got out of bed, made it to the gym and did my normal Saturday routine - gym, run errands, come home, eat lunch, get ready for the day, run a couple more errands, come back home read through the children's lesson, read scriptures and pray, then get ready for church, run to Starbucks then get to church.
I started getting weepy as I walked into the church.  It was going to be a rough night.  I walked in with one of my friends...she had just received the email that I sent to my group earlier that day...explaining that it would be my last night in Kids Village for the summer.  We chatted as we walked to the Children's area.  We walk into the double doors and check in...then my children's minister sees me, says hi, and asks how I was feeling about the night.  As I told her that I was sad and was going to miss them the next three months, the tears started flowing.  We talked a little about my mom.  Anne is a special person in my life...she is a year older than me and has gone through similar things with her parents and when mom first got sick she reached out to me and told me about her mom and let me know that she was only a call away.    She has always been really good with checking in on me in my role as a caregiver of a parent.  We briefly talked about the previous week and I distinctly remember telling her that the social worker told my sister and I that the next time we meet we would need to pick out a funeral home - not that mom was dying any time soon, but just for when she did, it would be a decision we would not have to make.  I remember telling Anne at around 4:15pm, "I'm not ready to even think about making that decision."  It was time to start walk through (our leader meeting where we walk through the night, before the kids and families arrive.)  Kids Village went on as normal.  I walked the halls, checked in on my groups, worshipped with the leaders and kids, then during their small group time, the other coaches and I walked the halls, checked our groups, and talked about Texas Rangers.  The service ended, kids and families left and we were in between services.  I gathered my stuff, put it on the corner of the check in desk and went down the hall to the restroom.  My phone was on silent, but I saw it ringing in my purse, noticed it was Silverado, answered it, but they weren't on the other line.  Got back to the children's area, grabbed my stuff, and saw that Silverado was calling again.  I missed the call, got the voicemail, listened to the voicemail and decided to call back.  (It was rare for me to call back, but after listening to this message, I was like, I should just check in and see what she means by this.)
I went to a quieter room, called back, and my body just started to tremble.  I got ahold of Rachael and she explained that mom's condition had changed, she was having difficulty breathing, but they had her on oxygen and my sister was on her way up.  I told her that I was on my way up...she told me not to panic.  I went to grab my stuff, let the group of people there know what was going on and was trembling the whole time.  They offered to pray for me but told me that if I needed to go, that I could and they would still pray for me.  I took them up on that offer...and ran to my car.
I tried to be calm, but it was hard.  Shan had texted me telling me that she was headed up.  I responded that I was on my way up there.  I told her I would call our aunt.  That trip was rough.  It seemed like forever, but I eventually got to Silverado...still trembling...scared of what I was to see.
Shan told me where they were and when I got there, a nurse was examining mom in the living room.  I sat next to mom, and Shannon gave me mom's hand.  A minute later, the nurse took my mom to her room.  Shannon and I met up with Rachael and got a glass of wine and talked to the nurse real quick.  She said that since mom was eating when this happened, they thought it was an aspiration and that some people recovered from it quickly, others decline slowly, and others decline quickly.  We called our grandma to let her know what was going on, then called our aunt to update her.  After we made those calls, we want back to mom's room.
They got us two chairs, and we sat next to mom.  I held her hand first.  It was so hard to watch her struggle to breathe.  I didn't know where the night was going to lead us...but I knew it would be a long and difficult night.  I sat by mom...told her that I loved her, and that Shannon and I were here...and that I thought she was the greatest mom ever.  After a while, I had to go to the bathroom, so Shan and I were going to switch places.  I started to let go of mom's hand, and she grabbed my hand tighter...so I sat back down...and told her that I would stay.   Shannon went and sat on her other side.  A few minutes later, she let me switch places with Shannon.
It sounded like mom's breathing was getting a little better.  Shannon said she had not eaten all day and that we needed more wine.  So I told her that I would go get some food and she also asked for a more comfortable shirt.  As I was in the food line, Shan texted me, "I don't want to scare you too much, but mom's breathing has slowed significantly."  I rushed back to them...and got back around 9pm.
They were putting mom on continuous care for at least the night, so her nurse got there right before I returned.  He was examining mom and giving her some medicines to make her more comfortable when I got back.  Her breathing was significantly slower.  Shan and I ate and Shan told mom of some memories she had.
Friends were texting both of us.  After checking my texts, I checked my email.  There was one from Anne.  In the email, she responded to my comment about not knowing how I would be able to walk through all of this.  She said that she could assure me that the Father will provide every grace that is needed in exactly the moment it is needed.
It was apparent that it was getting more difficult for my mom to breathe.  I sent a text to one of my friends saying that I was scared.  That I didn't think that mom would make it through the night.  A few minutes later, they gave mom a breathing treatment.  I walked into the hallway for a minute while they gave her the breathing treatment.  I came back in, she finished the treatment and Shan and I continued to sit with her.  About 5 minutes after her breathing treatment, she seemed to yawn.  Shan and I thought it was a weird sound, but a minute later, we were like, um she hasn't breathed again, has she.  And we both looked at each other so helpless.  Shan told me to get the nurse...I didnt want to leave mom's side.  I pushed the button...the nurse didnt come, so I ran to the hall.  He came back, saw her, listened to her heart and said, "Yes, she quit breathing.  I'm so sorry.  I have to call the RN back, I can't pronounce her."  Momma passed away around 10pm that night.  I was shocked.  I had never felt to helpless, so scared, it was a different kind of pain.
I called grandma, and our aunt.  Then I sobbed.  Other caregivers came in.  They cried with us, put their arms around us and told us that we were in their prayers.  About six hours after I had said that I was not ready to "decide on a funeral home," I was being asked for real, "What funeral home would you like for us to call?"
They gave us several more minutes then told us options.  I was still in shock, in pain, and sad.  I had never felt so numb.
So, I woke up sad that day for one reason...and went to bed sad the next morning for a different reason.  I was glad that mom was no longer in pain...but I knew that I lost a wonderful mother and friend that night....and that it's a pain I will carry the rest of my life.

November...

I was doing pretty good with this whole "monthly" blogging thing...then August happened...and I've been at a loss for words.  And really busy.
This disease is really horrible...I mean, really.  I don't know when it happened, but it has...I'm uncomfortable around my mom...like I feel like I'm with someone I know...yet not....it's weird.  I don't think you're ever supposed to feel that way around your parents.
I dont see mom as much as I used to...it's just hard....and I feel bad that I don't see her often....but when I'm with her....I just don't know what to do anymore.  When she was able to do stuff, it was a little easier...but now that she isn't able to do as much...it's become quite the challenge to know how to spend time with her.
And I still miss her...a lot.  I miss seeing her - what she looked like when her hair was longer, the gestures she made, the way she would talk to me, the way she would criticize me...yes...I miss her criticizing me.  Who would have ever thought?  I miss just talking to her about life.  I miss being able to pick up the phone and calling her...like after a hard day and you just want to cry...I mean sob...and know that she would understand...or when you have a good day and you want to celebrate that...or you find out good or exciting news...that was always the first call...and now here....almost 3 years later....I still miss it.  I miss her.  Her absence is still very much noticed...
I mean, I know she is still here and this is all stuff I could still talk to her about...but it's not the same....like I can't pour out my heart to her like I used to...it's weird to pour your heart out to someone and not know what her reaction will be...will she smile?  Maybe laugh?  Cry?  Be overly worried about me?  I don't want her to be overly worried.  She obsesses about stuff so easily...I don't want her to obsess about me having a bad day and end up hurting herself.
Speaking of which...she is falling more frequently...which is weird considering she is in a wheel chair most of the time...but still...they keep coming.  I hate that part of this disease too...I never know what to say or do when that call comes...because you know its part of the disease, so you know that it's going to happen...but also, you hate that it happens and are concerned because who wants to hear of their mother falling - ever - much less often??
Ok...I think that I'm finished venting...for now....I may pick up later.

where I'm at right now

I miss my mom.  I miss talking to her - like really talking to her...I mean, we talk now...but it's not the same.  I don't know that I remember the last "real" conversation that I had with her.  I mean, I know that she still knows me...but I feel like she doesn't "know" me...if that makes any sense.  I mean, it makes sense to me...not sure if it makes sense to anyone else.

All I know is that I'm sad and I miss my mom.  I am fighting to not feel forgotten - not by her...but by God.  I know that He loves me.  I know that He is Good, and Wise, and Generous, and Loving.  I know that He cares...that He is faithful...but sometimes getting those connections from my head to my heart....well, I'm a work in progress.  But I'm struggling with feeling forgotten by Him.  The pastor who preached at church tonight mentioned this verse in a side-story, "Can a woman forget her nursing child, that she should have no compassion on the son of her womb?  Even these may forget, yet I will not forget you."  Isaiah 49:15  Right now, my mom remembers me...but our relationship is completely different.  Right now, my mom is like every other sinner that has walked the earth...this disease is killing her...and she may forget me one day - not because she wants to...but because her brain and her body are fading away.  She may forget me...but I have a perfect, heavenly father, who sent His son Jesus, to die and beat sin and death...and one day...those who love and trust Him will be with Him forever.  He has not forgotten me...but loves me...pursues me...wont let me get away from Him - even when I try hard to run away...He won't let me go.

God's feelings for me forever were settled on the cross.  He loves me.  The cross proves how much He loves me.  Now to get all of this from my head completely to my heart...He's working on me.

updates

So, mom has been off the seroquel for about a month now - maybe a little longer and I think she is doing better.

She started physical therapy and occupational therapy a couple of weeks ago.  They want to try to get her walking again and feeding herself again.  We will see how that goes - but for now I am very hopeful.  After her first physical therapy appointment, the PT called me and told me that mom's body wants to move - which is a good sign.

Warning about Seroquel...if someone is prescribing it for you or a loved one...don't fill it.  It's so bad...I think it does more harm than good.  It's so frustrating to think that mom possibly lost the ability to walk and feed herself because of the side effects of Seroquel.  I thought those came from her disease - but apparently, they seem to think that they are side effects of the Seroquel.  SO FRUSTRATING!!!

But, what's done is done, I feel bad for allowing them to give that medicine to mom, but we are moving forward now...no need to dwell on the past.  I'm just going to move forward and warn others to avoid Seroquel at all cost.  

That's really all that is going on here lately.  June has been a very busy month for me.  I haven't seen mom in a couple of weeks - hopefully I will see her this week since I am out of town next week.

Sunday will be my third birthday that mom will not know that it's my birthday...which is hard...a weird day...wanting to celebrate another year that the Lord has allowed me to live...yet wishing my mom was there to join the celebration.  

Time Flies

So, do you ever look up and notice its been two months since you last updated your blog?  Well, that is what just happened to me.  My intention is to update at least once a month....and I just signed on to see when the last update was...and notice it has now been two months.  Crazy...hate it when that happens.

So, now that I am finally updating...what do I say???  I feel like a lot has happened, but nothing, really.  It's crazy how quickly I feel like mom has declined.  I mean, a year ago, she was feeding herself and walking all over the place.  Now she has to be fed and walking seems impossible for her.  Watching her decline has been so heart-breaking.  I struggle when I see her...with the fact that I don't want to see her in the current state that she is in, however at the same time, I don't want her to be alone or feel alone.

She had a bad reaction to one of her medications.  She was shaking/trembling uncontrollably.  We got her off of the medication...but still it breaks my heart knowing that she had that reaction and it took several days for the reaction to cease...

Visiting her can be hard at times mostly because she can't communicate verbally...so we have to be creative.  I know just sitting with her...knowing that we are there is huge for her.  I hate that she can't say my name anymore, but love that her face lights up and she smiles when she sees me.  Though I have to admit that there are many times that I feel like she doesn't really know exactly who I am.  I think she still knows exactly who sister is....but I'm not convinced she always knows exactly who I am.  Familiar to her?  Yes.  But knows that I'm her daughter??? Not quite sure.

It's The Little Things

I'm not sure what it is about new fonts and colors, but they excite me.

Sister and I decided to have a party for mom - and we are having it this weekend.  I'm getting really excited about it.  Shan ordered the cake last night and it sounds yummy.  Hopefully it will be a good weekend for all and mom will really enjoy her party.