Update on My Mom...

If you have seen me looking frazzled or worse if I have canceled plans on you (sorry Amanda, Chenchie, etc) several times, this week it is because there has been a whole lot going on with my mother.  I've not blogged too much how things are because, to be honest, it's hard for me.  Today I will try.

My mother was transferred to the El Paso LTAC Hospital.  At that time we had disconnected her from life support and we were waiting and watching if she would emerge from her coma.  I guess at that point I was preparing myself for her imminent death or her miraculous recovery.  Despite being a perfectly levelheaded human being I don't think I ever prepared myself for a middle ground.  One in which she neither died or fully recovered.

Yet as the weeks and days have come by everything is hard.  I'm seeing her muscles go into atropy and while she opens her eyes and will even nod at times she doesn't wake up enough to talk or sip on a straw.  I just wish it would get better, it would get easier for her.  I wish she could go home and be here with my babies, watch some tv and get to know what it felt liked to be hugged or even have a doughnut again.  

I worry now that she is transferred to a long term nursing home facility on the far Eastside of El Paso that she will be forgotten.  It is over a hundred and twenty mile roundtrip from my home.  It sucks because I wish I could be there daily.  My heart breaks every day and despite time, it doesn't get any easier.  The pain just feels worse.  I feel like part of me is dying with her.  I want there to be a miracle but maybe I lack faith because in my heart I just have this feeling I must accept things as they are.

She is now in a great facility.  If anyone here is local in El Paso please contact me for more information.  I still pray.  She is a fighter and the most wonderful women I've ever known in my life.  I just pray every day that she might regain more function and we can improve her quality of life further.  

Our choice to Redshirt...

My father is a total absolute football fanatic and so the term redshirting was something I was always familiar with.  It was always an important decision Texas longhorns made each season with their newest recruits.  It was the question of are they ready to play now or will they benefit by sitting out and preparing to play for one season so that when they start they really are ready to serve the team best.

                                                   

When we had the twins Redshirting took on a whole new meaning.   I loved their due date of October 24.  It was perfect.  They were supposed to be my little pumpkins and it would be safely into the zone like Harmon is where you don't worry about your child being the oldest or youngest in the class.

Of course God always has other plans and they were born on August 28th.  A few days shy of the September 1st cut off to begin school in TX and in NM.  That left us with a choice.  First we decided that since I had nieces and nefews born that same week (6 of the 7 grand kids in my family are born the last week of August, Harm is our sole rebel) and they all started at age four going on five.  So the babies started pre-k one at age two and pre-k 2 at age three.  

I've been keeping a close eye on them though and I started looking at how the twins were not developing at the same pace Harm had in the same pre-k level.  Rachel was shy and sort of the class pet, everyone of the older kids in Kinder and in her class loved her because she was so cute but she didn't relate to the kids.  Callum hated being there full days and his classmates would call him baby.  To us it wasn't about sports or even academics it was the social emotional gap that worried us.

I was still on the fence though.  Academically they were ahead.  Rachel even tested out of Kinder when they did her diag for DD-Pre.  Callum is equally bright.  One of my best friends  would tease me "Redshirting #richpeopleproblems" and she was right in a way.  The cost of one more year of private pre-k was going to be huge.  Research on redshirting is always divided.  This Summer I was still undecided.  

Than my mom got sick and so I and left the choice up to Chris.  He choose the free one, kinder and so we enrolled the twins in Mesilla along with Harmon.  I figured okay but I never felt peaceful.  The twins attended a few days and everything was okay but I never gave up that feeling of uneasiness.  I remembered all the stories of people wishing they had waited with their August birthdays and how many of their kids ended up repeating the course or later courses.  Even one of my nephews repeated as did a brother of mine and it just made me realize that I didn't want to risk that.  I asked Chris to reconsider and he admitted he felt uneasy as well.  So we pulled them.

Now they are in a special class called Kinder Plus at College Heights called the Fox class.  It's all kids with either Summer birthdays or fall birthdays.  It's perfect for the twins because they are kids just like them.  They might have been okay but this way just seemed like a safer bet.  Friday I went to pick them up and Rachel was the best time with he new friends.  One told me they were BFFs.  Callum is doing just as well making really good friendships.  I'm elated to see them socially really fitting in and for us redshirting was the right choice.

The spark of life...

On Tuesday we disconnected my mom from life support.  I was so scared that when they did the final phase I was so shocked that I bumped into a trash can with my car.  I couldn't get to her fast enough. I kept thinking this is going to be it.  This is going to be it.  That night I held her hand till 1 in the morning and I fell asleep thinking any minute I will wake up and she will have stopped breathing but the next morning I saw the sun through the blinds of her hospital room and she was still here.

                               

And she is still with us now!  The death sentence I feared we were giving her from disconnecting her was not a death sentence. Rather it was a blessing.  She is stronger as she ever was.  We moved from the ICU to a Long Term Acute Care Hospital on Friday.  She is stable.  I'm not kidding myself.  She is still in a vegetative coma and her odds of coming out of it are next to none.  Yet I believe in a God of miracles (just celebrate Passover and you will believe in it too).  I tell her everyday that if she is ready for Heaven that I will understand but if she wants to be here, that I will never stop fighting for her.  I love her with my whole entire heart and each day I left with her is a small miracle in itself.  

Si Dios Quiere/God Willing...

Yesterday was the hardest day for me and my family I think.  My mother has crashed twice.  She is currently on the ventilator and we have resuscitated her heart.  We made the choice that if she goes now, it's okay to let her go.  To sign that paper and say those words was not only hard for me but truly heartbreaking for my father who has been married to her for forty-five years or so.  We are also going to attempt to get her off of the ventilator.  

If I think too much about what is going on I think I will just become a ball of mush.  I don't think I can even start to cope with what it will like to not have her.  I just can't imagine my life with out my buddy, my dear friend.  Even now when I get sad or happy I reach to my phone and try to call her only to get her voicemail.  Instead I'm trying to remain prayerful and I'm being there for her.  I've been with her all night and morning and she has opened her eyes a bit and even yawned.  She has let me know that she is still here with us.  I don't know when that will change but to have my sweet friend open her eyes and to hold her hand is just a gift from God.  Now it's up to her what will happen next. 

And than the world just stopped for us...

This post has been over a month in the making.  I'm still coming to grips and so it might be rambling on.   It is a post in honor of my mom and shares from my perspective what is going on.

For us this was an especially fun summer.  I was so excited to share on the blog how our first trip to Disney went and how the gym intensives were going and so much other interesting things.  That all changed on the 22 of July.  The week before my mom came to the house right before we left for the White Mountains in Arizona for a long weekend.  We ate popcorn, watched her favorite show "The Soup", and just had a great time with the babies.  My mom came down a lot to see me and so this was not a really big deal or extraordinary in any way.  Just another great day.  That might be the last time I ever really get to see "her" again.

That Tuesday when I came home my brother texted me and let me know that she had food poisoning. I don't think I thought that much of it, except to say she needed to go to the doctor.  "If only..." is something I can't get out of my mind.  That night we had a company event in El Paso and so on the way home I called her.  My father answered the phone and he doesn't answer the phone since he had his stroke.  I finally got my mom on the phone and she was completely disoriented and she just dropped the phone mid-conversation.  I texted my brother that he needs to get her to a doctor right away but never heard back from him.

The next morning at 5:30 am my brother called me and let me know she had been admitted to the ICU.  It was dire but at the same time it was doable.  She didn't have food poisoning she had ketone acidosis which is a side effect of having diabetes.  She didn't know she had diabetes.  No one had known.  She hates doctors and is very much a herbalist.  She hadn't seen a doctor in four years.  Her levels of sugar were over 800 and my father's doctor, who kindly took her on in the hospital, told me she was a walking miracle.  I stayed by her side non-stop, it felt like this was in no way happening. 

In my mind I kept thinking how devastating diabetes was going to be for my mom because my mom loves food.  I decided at about two am I was going to just help like she has helped me with my disease.  She was going to live with us for a while and we were going to learn how to cook fabulous diabetes friendly food.  I was going to solve this challenge for her just like she cares for me.  The next morning her awesome doctors and nurses were on board.  We were going to help my mom wake up, get her some broth and start her rehabilitation, but she wouldn't wake up.  She was less lucid the next day, and my gut knew this wasn't going to be a fight about tortillas.  At noon that next day the nurses sent me away to go have some lunch away from the hospital.

When I got back the nurses wouldn't tell me anything except you can't do anything with my mom.  She was waking up and I was so confused.  Finally the doctors came and they showed me her cat-scan.  It was a total daze.  Two tumors, one measuring 5.7 cm by 5.6 and 5.6.  It made no sense how my mom could walk around for perhaps as long as 10 yrs without ever complaining of headaches, blurred vision, or any other symptoms.  My siblings and I gathered together and we just didn't know what to do.  One doctor wanted us to do surgery and another doctor wanted us not to do it.  My uncle wanted her transferred to Phoenix but the insurance wouldn't let us.  

I stayed by her side and my brothers also stayed close.  My father has also been there every step of the way.  He had a stroke 9 yrs ago and it was my mom who cared for him.  Now he is caring the best for her.  My sister has been a phone call away.  We started the preparations for surgery.  Than 7 days since being originally admitted my mother was admitted she stopped breathing on her own.  I had been sleeping at the hospital and at around 4 am that morning I heard "Carmen, Carmen... and the crash team came in.  I stayed there quietly.  No one realized I was there.  My emotions were so mixed because I knew life support was not something she wanted but I couldn't be the one at that point to say stop.  All I could do was watch and hold her afterwards.

Later that morning, with my families support I signed off for her to have surgery.  At that point we felt we had nothing to lose and she deserved the best chance possible.  She went through like a champ.  She never stroked out and while the surgery took 4 hours her vitals seemed strong.  The days that followed we all watched and waited.  Before we had the hope after the surgery she might be fine but the surgery went perfectly and my mother remained in a coma.  That was so difficult to understand.  I couldn't fix this.  Finally a week after surgery they finally performed an MRI.  The tumor I guess had covered the truth, she had a bilateral stroke the night she was admitted into the hospital.  

That was hard to hear, at least for me.  After having gone through the stroke thing as a family and seeing the hell my father has endured I wanted anything but a stroke.  It changed the time line.  The doctors told us instead of giving her a few days, we would be waiting weeks and considering it was in the front parts of the brain and into the middle it would affect personality and consciousness.  My sister was able to come in and visit her.  As a family we came together with a plan to wait for now.  Give her time.  Another week passed.

I had taken my first break from the hospital this past weekend and took Rachel on our mommy/daughter trip to Las Vegas.  This week on Tuesday, exactly 5 weeks (I think) I was on my way home when the hospital had pushed to have a trach put in.  It went well but than my mother's heart stopped.  They brought her back again.  I got there ready to give up but instead of my mom in a coma she was looking at me and responding.  Yesterday she spent the whole day looking at me, interacting, and it was so real and beautiful.  Today the reality sat back in and her being awake waned dramatically.  I felt helpless again but I'm not forgetting the progress she has made. 

The story continues and for now life is just frozen for me in many ways.  I spend a lot of nights and every morning at the hospital.  I love my mom and I don't know how I could ever not have her in my life.  She helps me raise my kids, she is my dear friend, the one person who always believed in me (even when I don't), we hung out every single week for at least one day and I miss her so much.  She is just the kindest and sweetest person who did hardly nothing for herself.  She cared for me all the times I was sick, in the hospital with the twins, with the accident, pancreatitis, heart problems, and so forth.  I can't leave her alone and not feel horrible because she scarcely has ever left me alone in a hospital.  

At the same time my babies have lost me for large chunks of time and I don't want them to feel abandoned.  They started school and I've yet to post any pictures.  I am trying to show her the love she deserves and make sure my family whom she loves with all her heart is loved too.  I'm grateful I'm not alone in this.  My 3 siblings have really come together like I've never seen us come together.  it was amazing.  I wonder every minute practically if we are doing the right thing.  I love this lady so much and I wish more than anything she could be making these decisions.  I'm trying to fill her shoes but I'm never going to be her.

I try not to be angry at God.  I don't get why her or why both my parents have now suffered strokes.  I know one day in this life or the next it will God will help me make sense of it all.  I have faith that he has a plan and has not forsaken her.  Right now I feel like my heart is being ripped to shreds.  I can't comprehend really everything with out falling to pieces.  I want her to come home and be okay; but I just want her to not be in pain and be at peace.  To be continued I guess... I don't know what will happen but I will be there, along with her brothers and her other children, her husband of 45 plus years of marriage and her grand babies. 

Don't underestimate the Little Man!

Callum isn't our middle child technically but let's be honest he sort of has that label.  On one bookend I have crazy Harm who is the family scholar and avid sportsman.  Than we have Rachel our amazingly strong gymnast and dancer.  Both at a young age have received recognition and I'm always proud of them.  Callum I've always appreciated his sweet gentle loving fun spirit he brings to every single person and everything he does.  I'm always proud of him just as much!!!!

Now this Summer something special happened.  David (the destroyer) who is Harm and Cally's much treasured hero and teacher pulled me aside.   He told me what a delight Callum is in his class and how his maturity is way beyond any of his peers.  That through his hard work he has gained some serious strength and will be promoted to the same special private class Harm did before he joined team track this semester.

I'm so proud of Callum and humbled how his light shines so brightly.  Not only does he have talents like soccer and now gym but he has a heart of peace and goodness that shines brighter than just his talents.

Sleeping Kitty...

Last month I spoke about starting a new method of treatment that was making me sick.  The treatment is methotrexate, a form of chemotherapy.  While I've been on it in the past it has never been dosed like it has recently.  The usual for me has been 4 pills once per week.  Now it is 14, which is very very strong and the max pill dose.  Next week they are likely going to start injections because I'm on the max pill dose.

So it sucks but I'm doing better with it.  The trick is sleeping.  I sleep now the same amount, if not more than my babies averaging ten to eleven hours a day.  This of course is really halting me with some of the things I'm doing.  I've been doing marketing projects from home but for now that is dead in the water.  I'm going instead try and just focus only on my masters and my kids.  It's a step back for me but the more I rest the more I'm me when it comes to my waking hours.  My kids are getting the best of me, my husband is, my friends are, and my writing is.  

I just try to remember a scripture in our church that says: be still and know that I am God.  I hate being still but The Lord is teaching me a lesson and I'm getting it.  The kids and I are having our best Summer ever and I know that once the progress of my disease is stymied it will pass, but hopefully I won't forget the lessons I'm learning.

Here are the lyrics of a nice song initially found in the Lutheren Hymn book which reminds me of these principles.

"Be Still, My Soul"
by Catharina von Schlegel, 1697-?
Translated by Jane Borthwick, 1813-1897

1. Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end.

2. Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

3. Be still, my soul, though dearest friends depart
And all is darkened in the vale of tears;
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrows and thy fears.
Be still, my soul; thy Jesus can repay
From His own fulness all He takes away.

4. Be still, my soul; the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul; when change and tears are past,
All safe and blessed we shall meet at last.

Hymn #651 
The Lutheran Hymnal
Text: Psalm 46:10
Author: Catharine Amalia Dorothea von Schlegel, 1752, cento
Translated by: Jane Borthwick, 1855
Titled: "Stille, mein Wille"
Composer: Jean Sibelius, b. 1865, arr.
Tune: "Finlandia"

Take me Out of the Ballgame!

Let me preface that we have the coolest Tball friends.  The coaches are just amazing and Crstal and BJ who lead the team are superhuman.  With that said, oy, Tball is a really arduous sport and I'm quietly grateful it is over.

Gym and dance are very time consuming sports.  There is no way around it.  We do 1.5 hour practices on Tue and Fri plus two hours on Saturday.  Tball practices had a very similar schedule but the biggest problem was that our Spring in this part of the country sucks.  It is incredibly dusty and windy, sometimes cold, sometimes sweltering and rarely pleasant.  Oh and the games take FOREVER!  Than there was Harm, he never complains about going to gym, EVER but Tball took an act of congress to get him to each practice or game.

Yet while I was complaining on a regular basis something magical happened.  I've noticed that Tball and baseball is a sport where there is a lot of tradition.  We have several friends who have batting cages, and they go to really expensive camps.everything from your bat to the uniforms cost a lot.  Our team did a lot of fundraising but we didn't buy the expensive practice equipment or go to camps.  Instead they practiced really hard.  We didn't have even one of the big superstars on our team (yes even Tball has superstars known in the city that teams recruit) but we still did great.  The boys won second overall in the city and I was proud of Harm!

I'm glad for now it is done.  The coaches are already planning on strategy for going into coach pitch next season.  They are going to start earlier and work harder... Oy!  Some of our family has encouraged us just to quit and part of me wants too but I think of all the lessons Harm and I both have learned and I'm so proud of him.  So I guess next year, take me out to the ball game, even if I would rather say take out of the ball game.

Back in My Day

Sometimes I think I am living with my father who grew up during the Great Depression once again.  Every day I'm bombarded with the, "back in my day we didn't have _______________".  Of course rather than my father it is always my husband.  

Chris grew up with 8 siblings, yes EIGHT brothers and sisters.  His mom was a stay at home my and while his father was very successful when you have 11 members in one house money doesn't go far.  Because of this though there is a really big gap between what I want to give my kids for opportunities and just fun family moments, and Chris' meted deprivation.

Both of my parents were born in real poverty.  At the feed store the cashier teased me about eating the ducks and my mother, quite serious, explained what a pain in the rear it is to pluck a chicken or duck by hand.  My father won't even eat chicken because that was the only meat he ever really ate until he got to college.  It seems so removed to me to even imagine my mom wearing flour sacks or my father jamming to the "40's on 4" (the Sirius Digital Radio station) alongside Captain America back in 1943.

The funny thing is that since they were both so poor both of them with shear determination pursued college degrees and became quite successful.  They made sure we as kids had all the oppourtunities that they didn't.  I grew up with frequent theater trips in Los Angeles and San Francisco and annual trips to see the Bolshoi Ballet.  We went to private school and always had the best clothing and other material needs met.  Later when practicing law in a Texas got more complicated the easy living days were over but I was still left as a young teenager with the desire to work hard and achieve, just as my parents had.

Chris on the other hand learned to work hard for anything he ever wanted.  His family lived in a nice home in Mesa AZ with a pool and so he and his older siblings would spend their summers holding a day camp for kids in the neighborhood.  He proudly proclaims how he picked cotton, babysat, moved lawns, framed homes, and worst of all worked at McDonalds just so he could visit Golfland or buy a video game.  This upbringing taught him that if he wanted more he had to earn it.

So in Chris' mind our kids need to be the same way, deprived; while I think you can teach kids good values through good oppourtunities.  The only solution when confronting such different parenting techniques is compromise.  I think we did that well last week.  We went on vacation and enjoyed Disneyland, Long Beach, and Las Vegas which was up my alley but we stuck to a very strict budget and the kids had to work to earn money for their trip which is up Chris' way.  

It is very difficult in making a modern family in the shadows of our own upbringings.  We just have to remember is that it matters less how it was back in our day but being united in parenting in the here and now.

Being there for Harmon...

I'm learning as a mom very quickly that the most important thing I can do is simply be there for my children.  It is more important than soccer practice, it is more important than T-Ball or gym.  It matters more than what school I choose for them or when they go.  I learned that lesson again on Wednesday.

Harmon started his swim classes on Tuesday at NMSU.  He is a mid level swimmer learning proper strokes and so forth.  While waiting for the teacher and his turn, mid-lesson he just got bored and jumped in the pool.  He wasn't at risk of drowning but not following directions is NOT OPTIONAL.  He was swarmed by life guards, the swim program head, and myself in five seconds.  They warned him and I figured that was the end of it.

After class I saw him crying his eyes out.  We stopped and I sat with him.  He told me: "Mommy, I'm always getting in trouble.  I can't listen at school, gym, and swim.  They never let me play in t-ball and I'm just a loser who is bad.  I want to quit everything."  My heart broke for him.  We talk a lot and he often shares his struggles with me.  I try to always catch him being good and really encourage him constantly because I know that he struggles.  I just hugged him tightly and told him he is more than his struggles and he will overcome.

Afterwards I called for his swim teacher to come back out and Colin was sweet enough to encourage Harm not to quit.  Later that his gym teacher David also encouraged him and let him know how much he believed in Harmon, and loved him.   Last night, I went to the end of his T-Ball game after I finished important work.  I almost didn't go, but I made it just in time to see his one and only time to bat.  He made a run and was so proud.  It meant so much to him that I was there to see him.  Afterwards just him and I went for ice cream.  I was so glad I got there in time for just 15 minutes of a game.

Just like adults kids struggle.  They need love and encouragement and they need someone that loves them enough to be there for them and listen.  I was grateful enough God placed me in the right place at the right time to be there for him and it has alerted me to the fact that I always have to be on guard and be ready to be there for him.  I can't keep him from hurting, I can only be there to offer him hugs and kisses and be ready to listen and love when it happens.   I need to be there more for my kids.  I love them so much and I want them to know that each and every day.