Reflection on 09

“Is this really happening, is this really my life?”

This single thought sums up 2009 for me.  It started off as a hard year.  We knew something was very wrong with mom, but we did not have a diagnosis.  She had just turned 55, so we were finally able to change her work status from “short term disability” to “retired.” 

The first four months of the year were tiring.  Mom couldn’t live alone, Shannon & I didn’t have a room for her, nor someone to watch her during the day, plus with no diagnosis…makes it very difficult to find someone to care for her.  She lived with grandma during the week, one of us would go to Wichita Falls for the weekend, and there were several weeks that she lived in Oklahoma with her sister and brother-in-law.

On March 10, 2009, she was diagnosed with Dementia with Lewy Bodies and Alzheimer’s disease.  I’d heard of Alzheimer's, had actually looked up the symptoms about 100 times the previous year and while there were some parts of it that made sense, it didn’t always add up for me.  I had never heard of Dementia with Lewy Bodies, but I looked it up that night (mom wouldn’t stay at the doctor long enough for him to explain the disease to us) and yeah, it was right on.

Then we had the difficult task of looking for an assisted living facility for our mother…which was not fun.  We knew we wanted to put her in a facility that specialized in dementia care.  We visited Arbor House in Lewisville and looking around the place was devastating.  Not because the facility was horrible, the facility seemed pretty nice, lots of things for residents to do, clean.  Devastating because every resident there was…well…old.  They had gray hair, frail bodies…and dementia.  Mom had no gray hair, her body was getting more frail, but no gray hair, no wrinkles…she’s a middle-aged woman…not a senior citizen.  BUT…the dementia piece fit.  I watched some of the residents and while their physical appearance was way different than mom’s…their state of mind and hallucinations were the same as hers.  Long story short, she moved into Arbor House this year and after a series of events, and for several reasons, we decided it best to move her elsewhere.

I still get nauseous when I go to see her.  My stomach always hurts…because my mom is in assisted living…and she is young.  I usually would rather stay in her room or go to a place where we are alone, where I don't have to see that she is in an assisted living facility...  Because I see her state and hurt for her.  I had different plans…she did too.

I’ve cried…no sobbed, more this year than in my entire life.  I’ve gone to bed crying, woke up in the middle of the night crying.  I’ve cried with visible tears and with invisible tears.  I’ve sobbed to the point of screaming…because I hurt.  I hurt all the time, actually.

 

I’ve gone several nights this past year with little to no sleep…because no matter how bad I’ve wanted to sleep, or how tired I was, I couldn’t sleep for the life of me.

I’ve gone several nights and days not wanting to get out of bed.  There have been several days it has taken just about everything out of me to just get out of bed.

I have a package of peanut M&M’s that she gave me at Christmas 2008 that I can’t eat…that I just keep on my desk or bed stand…the package has moved.

I have an Easter basket in the garage with candy in it…that I think is the ugliest thing ever…but she bought it for me…in her sickness…she still wanted to get Shannon and I gifts…I remember her quirky smile on her face as she put the Easter baskets on the kitchen table and told us to choose one…and I just can’t get rid of it…even though honestly, I kind of hate it.

I’ve never felt as alone as I do now.  I’ve never felt so far from God…but then so close to Him at the same time.  I’ve never seen His exalt Himself in my life as my Provider, my Comforter, my Hope like He has this last year.

I’ve laughed this year though too…a lot.  And smiled too.  There have been times that I’ve smiled because I’ve seen my mom happy, or I’ve heard her tell me that she loves me.  And there have been many, many times that I’ve laughed at something she said or did. 

And there have been times that I’ve forced a smile or a joke through all of the hurt and pain…because it seemed like the right thing to do.

I miss my mom.

I miss her friendship, her pessimism, her going out of her way to do whatever she could for her family.  I miss her criticism. 

It’s hard to see her like this.  To see her, but at the same time not see her, if you know what I’m talking about.

This past year has been insane…I’ve never lost anyone that I was real close to.  I’ve had several friends pass, family members too…but I have never had to watch someone I was close to go through anything like this.  What is most difficult – besides missing her terribly – is that she is the person who would naturally comfort me the most in any other situation.  So, what do you do when the person who would comfort you the most in a situation like this can not comfort you because…they are the person you are losing???

I’m forever grateful that in 2004 God led me to The Village Church.  God used the first 5 years I was there to mold and shape me.   He has completely shaken how I see things to ways that make more sense…leading me into a deeper relationship with Him.  He is continuously teaching me that His grace is enough.  Some staple passages and verses that help me through this time that I probably would not see the same way, had it not been for the Lord completely ruining me (in a good way) are:

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities.  For when I am weak, then I am strong.”  2 Corinthians 12:9

That life is a gift and God does not owe me anything.  “Oh the depth of the riches and wisdom and knowledge of God!  How unsearchable are his judgments and how inscrutable His ways!  For who has known the mind of the Lord, or who has been His counselor?  Or who has given a gift to him that he might be repaid?  For from Him and through Him and to Him are all things.  To Him be the glory forever.  Amen.”  Romans 11:33-36

There has been a ton of family drama this year…and with that (and most everything else) this always comes to mind.  “As for you, you meant evil against me, but God meant it for good, to bring it about that many people should be kept alive, as they are today.”  Genesis 50:20.  What you have meant for evil, God has meant for good.  So that God was involved in, allowed, did not stop the sorrow that had landed on Joseph’s life that he could bring about good, that He could save a nation, 30 years later.  And God does that repeatedly in the Bible…and I believe repeatedly in our lives.

To worship Him in this, that He has not placed this in our path to walk away from Him, but rather to run to Him, to grow closer to Him…“Oh give thanks to the Lord; call upon His name; make known his deeds among the peoples!  Sing to him; sing praises to him; tell of all his wondrous works!  Glory in his holy name; let the hearts of those who seek the Lord rejoice!  Seek the Lord and His strength; seek his presence continually!  Remember the wondrous works that He has done, his miracles and the judgments he uttered,” 1 Chronicles 16: 8-12

That He can and does sympathize with me…that I can meet with Him and tell Him how bad this hurts, how bad I hurt…and He is there and He understands…”For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin.”  Hebrews 4:15

And then, of course the huge one...”And we know that for those who love God all things work together for good, for those who are called according to His purpose.”  Romans 8:28

I am thankful for a pastor who has relentlessly preached the gospel, not religion to us and every week teaches us that God is after our joy…not our begrudging submission.  I think I am going to close this entry that Matt has preached that has haunted me and just ask that the Lord would continue to remind me and you of this.

There is nothing, nothing, nothing, nothing that is currently or on or in your life that God has not in His infinite, all knowing wisdom not stopped and so therefore it’s a part of the purposes of God for His glory and your eventual joy.

Frequent Questions/Comments

The past several months have brought questions and comments that are hard to honestly respond to. I write this, not to complain about it…but to just say here is how it is and the dilemma in the questions and comments. The questions are great; the comments are just a different way to show support. I don’t want people to stop asking the questions or necessarily stop making the comments – they are always said out of concern..and I truly believe that people want to know – otherwise they wouldn’t ask. And honestly, I appreciate them. I just write this so others know what is really going through my head when these things come up. “How is your mom doing?” is the hardest and probably most devastating question to answer…yet at the same time, I like when people ask it because I know they are concerned about her. But it really is the hardest question EVER to answer. She’s not the same person that I’ve ever known her as. Most of the time she is “good” I guess for her disease…but the disease is also taking over fast. Really fast. So how do you answer that? I mean in her mind, she is good…she usually doesn’t know that anything is really wrong. But then she is falling more and more…and breaking bones and needing stitches…I can tell that she sometimes has a hard time with her motor skills…like laying down in bed…takes her a minute sometimes…to lift or swing her legs into the bed…then to lay down…its weird…and I’m probably doing an awful job describing it. Or, when my sister was walking her back to the car after a doctor appointment to get stitches…she was going down from the curb to the car…and she got one foot down…but had trouble getting the other foot down. Or what about when I was eating with her the other day…and we had grilled tilapia, orzo pasta and veggies…and she just stared at her plate for a long time…looking kind of confused as to what she should do with it. And it wasn’t until I cut her meat for her that she knew that she could eat it. So, how do I answer that question? “How is your mom doing?” I mean, really she’s not doing well…she has a disease that is basically killing her brain…but most of the time, she seems to be in good spirits and she doesn’t realize that anything is wrong. A comment that is really hard to know how to respond to…”I just keep looking at you and your sister and you two are so young…I’m impressed with how you are acting with this and dealing with it and taking care of your mom. My kids are your age and they would not be able to handle this the way you are.” I mean, seriously, what do I say to that??? I mean, I think I’m doing the best that I can, but I don’t know that I am handling the situation well and with maturity. My response is usually, if you would’ve told me 3 years ago that this is how my life would be looking right now, I would not have believed you and would have told you that I could never deal with that now. The truth of the matter is that things happen and you have to step up, put one foot in front of the other, and deal with things and take care of the people you love. Your kids would do this if they were in the situation.

A Moment to Be Cherished

Shannon and I went to see mom on December 8th for her birthday, which was on December 7th. Shannon ate lunch with her and I went to take mom her birthday cards that I received.
Mom was having a really good day - earlier that morning they sang Christmas karoke and mom just jumped in, grabbed the mic and apparently stole the show. She got to keep the santa hat for her performances.
We took family pictures with mom in her Santa hat and then read her birthday cards. Then I walked back with her to her room while Shannon discussed some things with some of the administrators.
Mom and I looked at the birthday cards she had already received and added the new ones to her collection. I went to see mom on my lunch hour and the end of the hour was approaching, so I asked mom if I could walk her to the living room on the other side so she could hang out with everyone in there. We stepped outside her room and linked arms. (Mom is not really steady walking, so a lot of times, we hold her hand or her arm.) We got down her hallway and were about halfway to the atrium, and she stopped, rubbed my arm, looked me in the eyes and said, "I love you. You are so good." And I just stopped, held back the tears, and said, "I love you too, mom," and hugged her for a while.
I am so thankful for that moment and cherish it so much. I balled all the way back to work. I don't know if I will ever encounter another moment like that with her. I hope that I do, but I know that I am not guaranteed it. Honestly, with her disease, I know that there is a day that is approaching that I will walk in to go see her, and she will have no clue as to who I am. So, I am choosing to remember this moment and store it for years to come.
There is no doubt in my mind that my mom loves my sister and I very much and are very proud of who we have turned out to be.
I'm really behind on this thing and have several ideas of things to post on here, mainly a reflection on 2009 and what I hope for 2010...but those are to come on a later day.