Memory Monday

I was 13 in this pic.  I know that because when I was 13 my mom and dad bought me that TV and we got cable for the first time and it was put in every room.  Including mine.  This was when life was simple.  Drama was a little bit of gossip or petty fight with friends at school.  I had never heard the words mental illness, antipsychotics, or schizoaffective disorder.  See all those bunnies?  My Memaw and Pepaw sent me a bunny every Easter.  I loved stuffed animals.  They also sent me cabage patch dolls and I still have them.  My girls play with them.  I, like Faith, loved purple and my mom let me pick out my whole bedroom set and paint.  It was a great room that I loved during my tween years.  I later painted the room across the hall a deep shade of evergreen with maroon trim and it was much more mature...that was not long before my parents divorced.  I still dream of this house and I can vividly remember how it smelled.  I loved the layout.  I loved that my Grandma had picked it out.  I loved everything about it.  I still dream about it, in the dreams I am always disoriented.  It is hard to explain, but gosh I loved that home.  It was the only thing I was really bummed about when my parents split.  I wonder if my kids will feel the same when we move out of this house.  Do you ever forget your childhood home?  I don't have much emotional attachment to this place, everything bad started shortly after we bought it.  Part of me feels like losing it and moving back to the duplex brings the kids and I full circle.  Maybe that is how it is supposed to happen.  Maybe that is how the next chapter really starts.  So many questions.  So few answers.

Levi is very sick.  Please keep him and everyone involved in your thoughts.  It is an extremely trying time.  There are no words.  Sadness and grief but no words.  The most important thing to remember is that the true victim to this awful disease is Levi.  The rest of us are all affected in various ways but he is the one who is truly suffering.  I am trying with all my might to live in the moment, make the best decisions possible with the information I have, and keep my mind open to whatever the outcome in the next few months will be.

We leave for NJH next week.  I am in full-on panic mode with all that needs to be done.  Alorah, thankfully, has stayed stable since her last burst and we have not had to go to the hospital or repeat oral steroids.  Thank goodness for small blessings.

I have to get back to writing my first college paper in over a decade so this is a short one.  Overall I miss my innocence and naivety.  I think anyone dealing with a person who has a severe mental illness would agree.  Life will never again be anywhere close to how it was.  Starting over in every sense of the phrase.  Trial by fire.

Memory Monday

 Some things I miss

Some things I don't

 baby wearing <3  14 mths, Vance was fast asleep under there.

 getting smacked in the face by a baby.  Nothing sweeter!

 nursing toddlers.  yes, nursing a newborn is awesome, but nursing tots instantly fixes ANYthing that is possibly wrong with them.  Makes life a whole lot easier!

Back when Vance played dolls with his sister :p

 spending summers poolside!  Those days are long gone.  Man, we loved 'em though!

fuzzi bunz.  Cloth diapers.  Oh, I loved pulling cloth dipes out of the drier and folding them all back up.  It was awesome.  Yes he is nursing in this pic, too.  It is one of the few I have of clothe diapering.  I really think CD'ing is why he potty learned all by himself before 2 1/2.  

Ahhh, I loved all of the above.

I now love sleeping in (even if they get up at 6am)

playing legos

some board games (okay people, I hated Candy Land.  I admit it)

puzzles

long walks with Toby

talks that have substance and show off their understanding

learning how smart my kids are

childhood.

                                                                   childhood is magic.

Memory Monday

Summer is over.  It went by SO fast.  I found Faith's floor this weekend, that was pretty much my highlight of my summer vacation.  I took 4 bags of trash and several boxes of donation items out of her room (with her help, and she did really well with letting stuff go.  Alorah, ooohweee, she does not let things go without a lot of effort).  Faith, turns out, likes to make her room *look* clean by stuffing stuff in the most random places!!  Behind her shelves, under her armoire, in toy bins, just everywhere.  In every nook and cranny.  I found no less than 40 socks.  Now that I know this little secret, I am determined to break her of it.  Frankly I was grossed out.  

Classes start today.  I am sad that I could not take as many hours as I had planned, the open-ended nature of Alorah's trip to Denver made it impossible.  In fact I will miss the first 3 (at least) of my biomedical ethics class.  I have already read the first 3 sections of the book...fascinating.  I have a very detailed email in to my professor and I hope they will work with me.  If not I have no choice but to drop the class and take it next semester.  I am actually really excited for these classes.  Although flipping through The Bedford Handbook I realized I did not miss that book all these years.  At all!  

As always my next semester depends on where things go with Alorah.  We are set-up with a long-term case manager so that going through all the paperwork to get back up there will not be so drawn out next time.  Most likely this will not be her only trip, this is under the umbrella of diagnostics.  There will, in all likelihood, be follow-ups with her team up there.  She has been doing well lately.  She had a hiccup and hit high 80's with her pulse-ox this weekend, along with a very high heart rate, but her AAP stabilized her rather quickly.  She has had more good days than bad lately and we have made it almost 8 weeks without steroids (which is HUGE).  As much as the mask just makes me sad it is working, as is the daily neb treatment (that I loathe.  She is just not the same Alorah on albuterol all the time, it has been very trying).  In one month we will be in Denver.

This is more of an update than a Memory Monday.  

A decade ago school did not, at all, entice me.  Now I can't wait.  Next semester the kiddos will go to daycare, I will take  12-15 hours.  I have to get through a few bio classes, political science, another psych class, and an elective.  It doesn't sound like a lot.  It is.  One step at a time.  I am actually looking forward to getting back into my school routine.  

Memory Monday

May is Asthma & Allergy awareness month.  Please see this website for the FACTS.  Chances are you know someone with one or both.  Chances are you have heard the cliche "Oh don't worry, they outgrow it".  For some that may be true....or it could remain dormant and show up again in adulthood.  Vance was diagnosed with Asthma at 4 mths which is the first time he got sick with a respiratory infection (he was vaccinated for RSV for several months over his first winter because he needed oxygen for so long after birth.  A condition known as Bronchopulmonary Dysplasia).  Thankfully he never got RSV.  He was aggressively treated after birth for his respiratory distress.  He was sent home and kept on oxygen for 5 weeks.  He has not had any symptoms of asthma since 2008.  Alorah, on the other hand, developed Asthma after a bout of RSV in Feb of '04.  She had just turned 2 when she got sick.  Several trips to the urgent care, chest x-rays, etc. she was not aggressively treated.  She did not get a nebulizer until several respiratory infections later, and it was not her crappy ped (that she had before her current ped) who prescribed it.  It was Urgent Care.  For years she was able to take a break from maintenance meds for the entire summer.  Her attacks were intermittent.  In the past few years they have become worse, much scarier, and she has anything but outgrown them.  She has coughed so hard she has turned purple on several occasions.  She seems to develop a new trigger every time I turn around.  Her Asthma is severe, persistent, and downright (at times) terrifying.  As I look back on Vance's experience with Asthma and Alorah's it is hard not to draw comparisons. My "theory" is that she has scar tissue from the RSV.  No doubt allergies also play a huge role in her Asthma but the trend of her getting worse as her she grows worries me very much.  They both have had to deal with Eczema (a very common issue with Asthmatics).  I have found that plain, organic, unrefined coconut oil is amazing for it.  As I have watched Alorah's life essentially be taken over by her Asthma and Allergies I have struggled with what to do to help her.  I am constantly on the look out for anything that may help.  Traditional medication, even at crazy doses, has not kept her it under control.  We made it through April without steroids and that is fantastic...but she cannot stay on these doses forever.  Trying to make life safe for her is a constant battle.  I let her play outside for a few hours on Saturday.  Pollen levels were not overly high and the wind was down....on Sunday we paid for it.  Low pulse-ox, crabby, moody, unreasonable.  When she is exposed to too much-watch out.  It is not pretty.  It left me upset and unsure of what to do.  Obviously she can't even go outdoors when pollen levels are middle range (and she wore her mask, she always wears her mask) now and at least I know before she did this at school.

The awareness of Asthma & Allergies isn't really there.  4,000 people die every year from Asthma in this country.  They affect 60 million people, 1 in 4 Americans has one or the other or both.  70% of Asthmatics also have Allergies.  Yet our state does not even have a walk.  It is so frustrating.  What do you do when it's your child that doesn't outgrow it, who can't go to sleepovers, who could have another "big one" any day and when that happens life stops. I guess you research, you get good docs, and you go to National Jewish Health if you live in a resource-poor state like NM.  We will be in Colorado this summer.  I got a call today (and missed it, UGH) that we are ready to make that appointment.

Most of all be understanding and don't downplay it.  Asthma is very real.  It is chronic, there is no cure.

Memory Monday

Fafers Nicole:

 Faith Nicole.  Her name was hers years before she was born.  It suits her, so well.  She is my first born, the child that taught me how to be a Mom.  I knew how to love children, I knew how to love and care for babies, but she taught me how to advocate.  How to fight.  How to follow my heart.

 She has a heart of pure gold.  She has the best laugh and a contagious giggle.  She has a huge affection for pets and animals.  When we saw the photos coming out of Japan after the devastating earthquake and tsunami her first question was if there were dogs there.  The world needs people like that, don't you think?  She also loves babies!

 Without physical therapy to strengthen her core she would never be able to navigate the playground, or swing upside down like this.  Thanks to years of early intervention and hippo-therapy-she can!!!!

 She loves to learn and she has an incredible IQ!!!  She is so smart.  In the pic above she was watching a hot air balloon being inflated and Gran Diane was telling her how that works!

She loves order. She had put all these buttons into color category. She spends hours making necklaces and bracelets. She loves to paint, her art is amazing.

She is silly and happy and fun.  She rarely makes a fuss, except about food but even that is getting easier every year.  How is she about to turn 11?!  My Mommy-heart hurts.  It goes by too too fast.  She refuses to go to sleep until I sing "Bushel and a Peck" to her and smooch her nose.  She sleeps with beary every night.  She loves dresses.  Oh heavens does she love dresses!!!!  Thank-you for teaching me Fafers goose.  I love you.  To the moon and the sun and the stars in the sky.

Memory Monday

Putting these books together for the kids is grueling.  I spent hours....hours.....on Friday going through pictures to print.  (Costco has a coupon for $.09 prints coming up on the 14th).  It is like looking at a ghost.  I am doing this for my kids. To help them.  For me it evokes such complete and utter sadness.  These pictures are from right around when everything started.  If only I knew then what I know now.  It took such a long time to grasp the gravity of his illness.  To really fully understand it.  The only difference between Schizophrenia and Delusional Disorder is that in Schizophrenia the delusions are things that simply cannot happen.  With Delusional Disorder they are things that could.  (also the auditory and visual delusions are much more prominent in schizophrenia).

Putting these books together I realized that I am missing all of 2008.  They are on his computer.  I have to get those pictures somehow.  There is also an entire album of irreplaceable pictures of him and the girls before we went digital that I have to at least be able to scan in.  I'll figure it out.  Somehow.  I also want to figure out how to get our home videos onto DVD for the kids.  Costco does it-for $17 for 2 tapes.

After devoting Friday to memories I devoted part of Saturday and all of Sunday to Algebra.  Diane, who loves math, came over (a little birdy, eh hem, my dad told her I was struggling) and helped me get unstuck.  Sunday I got myself on a roll and knocked out a HUGE chunk.  My children...sigh...mulberry is too high so Alorah had to stay inside.  She ran around chasing Vance and got her heart rate up to 180 without having had a recent neb.  I forced her to chill out and watch Tangled.  They played with Little People and video games, and raided the kitchen.  I had to get my school work done so I went in my room and got to work.  I felt terrible but I have 17 days until my final.  I have one more chapter to get through (graphing, which is much easier than the chapter I just finished).  I have a big test today.  HUGE.  So wish me luck.  I feel like I will do well.  I finally get the concepts that were really bogging my brain down and now I know where to go for help, and it isn't a stuffy room with strangers.  Hmm...maybe living at the duplex will be extra nice because there's an engineer next door willing to help (and who thinks math is..f....fu....FUN). It is with sheer will that I will pass this class...and I WILL do it.  Even if it means that for the next 17 days my house looks like hell.  After today's test I have 2 more.  I will rock them...because I am just that awesome.

Memory Monday

This one is hard.  Very hard.  I remember this man. With Payton (my mom and Rob's golden, he passed away last year)
With all the pain and all the hurt my heart, somewhere deep, tucked inside remembers this man.
I have never fully said the words publicly.  Never typed them and now..doing so..makes me feel slightly naked.  I don't think the stigma of mental illness does anyone any favors though.  The intense (*note-I will not share everything, I will only share what I feel comfortable talking about) details of his illness are not mine to share, so it is hard for me to know what to write.  I can tell you he has been diagnosed by two psychiatrists with Delusional Disorder Type Jealous (a cousin of schizophrenia).  I can tell you that it ripped our family apart.  I can tell you that I tried with all my soul to help him.  I can tell you that he is now in the grips of a downward spiral of psychosis, I have never seen him this sick.  I am doing the only thing I can do to help him, through the courts.  He literally changed over night, sparked by the loss of our 4th baby.  He started to become ill in Feb. 2006, 3 months after we bought the house.  When I was pregnant with Reese he told me he had started to hear voices and that demons were attacking him.  Growing up in a church that talked about demon oppression and possession I took that at face value.  He saw a pastor who told him he was having anxiety attacks.  I came home one day about 6 weeks after he brought Reese's ashes home and he was here early...he was crying, sweating, and shaking.  That is when he first asked if I had cheated.  His delusions centered on me, he was (is...?) convinced Vance is not his and that I had been unfaithful.  He was my first everything...the idea of cheating on him never ever crossed my mind.  DNA tests did not convince him, nothing did.  He got somewhat better after starting on medication but he made some choices that I could not allow in my life which is why I left in 2009.  Of course there is a lot I am leaving out, this is very generalized.  When we got back together I honest to goodness thought he was better.  I thought he would value me, appreciate what he had, be grateful to have his children back under his roof.  It became apparent very quickly that that was not the case.  He asked for an open marriage on the eve of our 10th anniversary. That was my breaking point.  We all have our limits.  I reached mine.  Even before he moved out he showed some signs of instability but I had no idea he would get so sick so fast.  He can no longer work.  He is hearing voices.  He is not that man in that picture.  That man loved me more than anything and he showed that.  He took care of us.  He was good to us.  One day in September 2006 that man died.  There will not be a funeral...there will never be closure....but he is gone.  I tried everything in my power to help him.  He went off of medication sometime in 2009.  Even with meds he was never the man I married again.  I can't tell you how awful it is to deliver a lifeless baby 5 months too soon.  To hold her and tell her you love her and say goodbye before you ever got to say hello.  Babies that small do not look like babies born even a month later, her skin was translucent, but to me...to me she was perfect.  To lose my husband weeks after was, at times, more than I thought I could bear.  For a blissful 9 years I was with the most wonderful man.  I could not ask for more.  I am thankful for every day I got with him before he got sick.  The unpredictable, sad, long, hard days after he got sick?  I don't miss those.  I don't miss walking on egg shells.  I wish I could save him, I wish I could help him, but with the way our system is set up that simply is not an option.  I cannot force him to get help.  I cannot force him to take meds.  I cannot force him to get counseling.  I hope the courts can.  I hope I can get the judge to see how badly he needs help.  That man in that picture (Nov. '97) will never come back, but if my kids could at least know a dad...that is all I want.  I don't know how long it could take for him to get better or if he will get better.  I have told my kids over and over and over that it is NOT their fault.  Vance looked at me the other day and said "and it's not Daddy's fault either".  He is so right.  It isn't Daddy's fault.  His brain is sick...very sick.  I am not sharing this because I want anyone's pity.  I am sharing because 1 in 5 people will suffer from mental illness in their lifetime.  It does not discriminate.  If someone you love shows extreme personality changes, becomes paranoid, elusive, withdraws from loved ones, sees or hears things...if they show signs of mental illness do whatever you can to help them.  Some people do recover.  Hold onto hope.  If all else fails...it's okay to let go.  If it was just he and I maybe I could have stayed but I did not want our kids to think our marriage was normal.  It wasn't.  If you are caring for someone with mental illness make sure to take care of yourself.  You WILL burnout.  Take care of your own mental wellbeing.  Get counseling (I did and it did help).  Take breaks.  The best advice I got was to be honest with my kids about their Dad.  Shrouding it in secrecy does not help anyone.  Levi's illness is severe.

To the man in that photo,
Thank-you for those 9 beautiful years, these 3 amazing children, for the memories.  Thank-you for loving me. I will always remember the good times and cherish them.  I wish I could save you.  I will keep taking care of our kids and doing what I can to help you.  I am so sorry I couldn't make you better.
You will always be my first love and nothing can change that or the life we made together and the many memories we shared.

Memory Monday

Sigh, I blinked.  I should never have blinked!  This sweet newborn is almost 11.  She is growing-up way, way, way too fast.  Please, slow down!  I still remember how she smelled, how soft she felt in my arms, how overwhelmed I was with love and responsibility.  Her perfect rosebud ears.  I could not stand to be away from her, I didn't leave her until she was 10 months old and when the movie was over I could not wait to have her in my arms.  She was the perfect baby.  She never cried, she latched on and nursed for 14 months (she only weaned because I was half way through my pregnancy with Alorah and my supply went away, that and she was tongue-tied which caused me intense pain and when she would latch on I would cry because her tongue could not latch on properly and instead she was latching with her teeth), she was rarely put down for the first 6 months of her life, she didn't walk until she was 14 months old.  She taught me how to be a Mom and advocate, how to trust my instinct.  Before I had kids I was of the mindset that MY kids would never sleep with me, that was really the only preconceived notion I had about parenting.  Formula was never an option so I just knew I would nurse.  I fell into Attachment Parenting.  I had no idea what it was called I just knew that co-sleeping, baby-wearing, nursing, etc. felt right.  I don't think I even heard the term AP until she was over 6 months old and I found Dr. Sears and finally felt validated.  My family gave me such a hard time about my parenting style, I stuck to it but it was so hard to not have their support....by the time Vance came no one blinked when they saw him in my Moby wrap attached to my chest.  Faith is amazing.  She had a rough patch and ages 3-5 were very hard but getting her the physical, speech, and occupational therapy she needed made a huge difference.  Early intervention is key, without it I can't imagine her today.  She is a the sweetest, gentlest, kindest child.  Her teachers adore her, she grabs your heart.  She is so happy, she rolls with it, she does what she is told.  She is spending more and more time in her room with the door closed.  I'm so sad!  I miss her and force her to comes snuggle on the couch and watch tv with me.  Her siblings don't like it either, they pummel her door at least once a day trying to get some attention from their ring leader.  She loves shoes and clothes, she would live in dresses if she could.  She has always had an affection for sparkles.  She loves the color purple and she sleeps with her precious Beary every night.  She loves little kids and helping them-mostly she loves bossing!  She would rather be inside crafting than outside playing but she loves camping.  She is her sisters other half, they are yin and yang.
I seriously need to stop blinking!!!

Also Happy Birthday to Gran Diane.  My Dad's girlfriend of 14 years who we all adore and love.  Thank-you for your presence in our lives.

Memory Monday

From March 2001-November 2005 we lived at the duplex my Dad bought (pretty much so that we could live next door-before that we lived in the same apartment complex).  It was so nice having him, and when she visited Diane, right next door.  We got to spend a lot of great family time together.  When Vance was born we simply outgrew the duplex and by the time he was walking I was loosing my sanity.  This is one of my favorite pictures from that time.  My Dad has a big thing for these flutes even though they are more like shrill whistles when in the hands of a child (and mine are no different!).  She was 2 in this picture, such a sweet memory and I'm glad someone grabbed a camera.  I love how she doesn't even have her hands anywhere near the holes.  There are still toy boxes at my Dad's for the grand"babies" to play with.  These days they are more into the remote control bat mobile or the Cat In The Hat car and always the Polly Pocket box.  We spent many Sunday mornings over at dad's in pajamas eating bagels.  Making music with Papa, what could be better!

What IS Memory Monday?

Memory Monday is something I thought up because it goes with what my blog IS. It is a reflection of my life, my children's lives, but most importantly (and I hope so much that it shows) my absolute LOVE for them.  Memories are my legacy to them.  I have 3 journals: this one, my livejournal (which I kept from '03-'08), and my Dear Reese journal.  Each one holds a special place in my heart.  I stopped my LJ when my life fell apart completely.  I felt like I needed a fresh place to store my precious memories.  Somewhere that wasn't filled with my old (wonderful) memories, somewhere that didn't hold the pain of trying to figure out Levi's mental illness, somewhere new.  That is how this blog was born and while I have had periods of rest where I haven't blogged I, just from going back and reading my old blogs and this one, can read an entry and go right back to that period of time.  Things I would never remember, the memories are in the details.

Memory Monday is for my children (and YOUR children if you choose to do so..I just ask that you credit my blog for it if you do by linking until I get a button and then I would appreciate if you would use that) so that they can see pictures, or even objects, through my eyes.  They have no way of knowing the memories behind photos.  I look back at my childhood pictures and I wish I had the memories behind them.  Where we were, the things that stick out in my own mothers' memory.  So, feel free to start your week off with a memory, your own legacy, so that your children too can learn about themselves and you years from now.  Imagine if we all had pictures with detailed memories from our grandparents, how amazing would that be?  If I die please, someone, take the time to print out (if nothing else) Memory Monday and make them a book.  From me to them....

Memory Monday

My Gramps. My Dad adopted me when I was 5 but long before he adopted me his Mom (Grandma Eleanor) and his Dad (Gramps George) treated me like one of their own. They both gave me a million memories. My Grandparents divorced when I was 7 maybe? I don't know, we moved in with my Grandma when I was in 3rd grade. Anyway, my Gramps bought a trailer and lived in the nicest trailer park just down the road. I could walk there when I was 11, and when I got my drivers license one of my first "errands" was to water his plants when he was out-of-town. He bought me my '57 chevy barbie car. I loved that thing. Every Christmas he made me a Folgers size can of homemade chex mix. It was always gone by Dec. 26th (I think this is why I love making it from scratch for my kiddos...memories). When I was 13 a big huge bumble bee got in the house. I locked myself in my room and called him crying to come kill it. He did. When there was a massive snow storm and my parents could not get home he picked me up at daycare and kept me overnight, that was the night my foot found his missing sewing needle (owch!). He loved Clan Mcgregor Scotch and when I was old enough to buy it I would get him a bottle for his birthday. He was rough around the edges but had a great heart. I still miss him so much. He used to take me out to a ranch his friend owned, I collected fossils. He took me to the nature preserve to find birds, he loved to bird watch. He gave me a book of birds and I spent hours looking at it. He took me on a road trip to Nebraska when I was, gosh, 11 or 12 to visit family. We had the best time, breaking the trip into 2 days both ways. It was fun to stay in a hotel and go swimming. He never, ever forgot a birthday. Not mine and not my kids. He had a calendar in his house with birthdays written on it. He had a stash of "naughty" magazines in his bathroom, lol. He drove me to tutoring when I was having problems in math. He was always there. He was this permanent, solid, comforting, wonderful part of my life. He passed away a month before Reese, in June of '06. I am immensely grateful that I got to see him one last time, even though he was so close to death, it was still so important to have a little bit of time at the end to say goodbye.

I love you Gramps. Thank-you for the memories.