Thursday, February 28, 2013

Hard Truths

Raising the family that I am my mind is ALWAYS going.  The things that go on in my life and in my home are immense, intense, overwhelming, terrifying, painful, joyous, awe-inspiring, uplifting, and amazing.  I'm sure I could fill this entire post with words to describe our life.  I could simply open a dictionary and could make 2/3 of it perfectly describe a day in our home, some days possibly even more than 2/3!

The problem is do you get our life?  Do you understand what I ACTUALLY mean when I say those words.  You get what those words would mean to you from your life experience but you don't GET what they mean for our life experience.  And that's ok.  I don't want it to sound like that's not ok, or that I am upset with you not GETTING it for my family's use of the word.  That's normal.

The problem is though people need to GET what it means to be living with a rare disease, what it means for our son, for me, for our family.  Other special needs families need to know that they aren't alone in their thoughts and feelings.  Their extended families need to know how to support them, and talk to them, help them and understand them.  Their friends, schools, servers at restaurants, cashiers at the stores, and community as a whole need to GET what it's like to live this special life day in and day out.

Sometimes I think those of us in the special needs community only share certain things.  We talk medical with the best of them.  We can discuss syringes, extensions, curly tubing, swab caps, CADD prizm's, joeys, infinities, medications, supplements, weight, doctors, testing, drainage and last but VERY not least POOP with great ease and detail for hrs.  But the moment it comes to talking about our fears and thoughts and dreams and guilt we lock down and keep it all inside.  Whispering behind closed doors with our spouses (some not even able to do that) about all of these things, crying silently in the shower keeping it all inside.  Then we hit facebook in the morning, with detailed facts about our kiddos night and day and appts and phone calls.  Don't get me wrong we do talk some about our fears and thoughts, especially when we are faced with a "member of our group" being placed on hospice or passing away.  But the thoughts are there for us, they are real for us EVERY day.

Sometimes I wonder if I'm the only one who thinks about it?  Am I the only one who cries for what is to come?  Are we the only ones to sit up late at night talking about it, discussing it, saying aloud the what if's and what will we do's?   Now years into this life I KNOW that I'm not, but still it's such a quiet part of our community.

Heck as I re-read what I have already written I see that I continue to use the words "it" to replace, hospice, death, progression, funerals, burial, passing, pain, torture, emptiness.  Even typing this post about how we avoid these topics, I continue to avoid the words.

My conclusion on why we do this?  It's scary as hell.  It's painful.  We are not at the point of hospice. We are not specifically planning for Eli's death.  We have talked about our wants and desires for that point of his life.  We know what the road we are on leads to.  We have thought multiple times that we were going to lose Eli already during these last few years.  We aren't to the point and the pain is so huge for us now that I can't even imagine the pain when we are there.  Some times when the talks come up with the docs and there are brief mentions of what's to come the pain is so real for me that I can't breathe.  That the world feels as though it's crumbling in.  So I get how painful it is for us to talk about it.  How much it hurts to say the things that are on our mind and in our hearts.

Sometimes I feel guilty to talk about these fears and thoughts.  There are families out there whose kids are on hospice now, whose children have already passed away and earned their wings.  My fears and thoughts seem so small and trivial and unfair compared to the pain they are living with.  My child is still here with me.  As sick as he may be, even on his worst days he's still here.  I can reach out and touch him and hold him, I can hear him breathing, I can hear the clicking and swishing and bubbling and beeping of all the machines keeping him alive. I never want my pain to be compared to theirs. For I can't imagine their pain, I don't want to imagine their pain. I have to remind myself that as similar as all of our journeys may be at points, as much as we all support each other and try to walk these lonely roads together, that our stories are still very different and our feelings can all occur independent of each others journeys. Maybe this doesn't make sense to everyone. But to me this all makes perfect sense, and I know it will to so many of you out there. I guess what I'm saying is I vow to be more open about my thoughts, feelings, life, fears and hopes. I hope others can do the same. Special needs families tend to feel very alone and isolated as it is..Then we keep so many of these things inside of us and don't open up to each other easily and share our stories with each other. Lets not make each other feel so alone. Lets not be left questioning "am I the only one" Let's not make new moms and dads and families feel as though they are alone in their journeys. I vow to you guys that I will take the leap. I'll share the good, the bad, the hopes, the fears, the thoughts, the dreams, and the nightmares. I have HOPE. I have hope for myself, my family, my little warrior, and I have HOPE in our community! I love you guys more than words can explain. I don't know where we would be without each other.

So you may be thinking, great plan Heather, makes perfect sense and I think it's a good idea....get to it.  I will.

What's going on with our family?  That's quite the question. 
Emily ~ She threatened to kill herself (she told her friends AT school and the school psychologist called us) and we ended up having to take her thru the ER and then she was admitted overnight to a children's mental health home.  She's stressed about falling behind in school and the pressure of all of that.  She's falling behind because she refuses to do her school work anymore and if she does do it then she forgets to turn it in or loses it.  Her test grades are perfect but she doesn't want to do any of the extras.  She practices her violin but never turns in her study sheets resulting in an F.   She spends as much of her time as she can watching her TV shows or listening to music.  If she doesn't have music then she can barely function.  She is in love with every boy she meets and it's a big struggle.  She doesn't want to speak to us, or anyone else for that matter.  She does stay busy with choir and violin and such, but she's struggling more than most would know.

Jace ~ He's out of control.  His mood swings have escalated.  The docs believe he has a mood stabilization disorder, basically he's to young to label him as bi-polar so they have fancier terms now.  They can't get him on any type of meds that help.  He's failing in school and no matter how the info is presented he can't seem to grasp it easily.  They are doing further testing at school as he definitely seems to be having a big learning issue.  He's outbursts have gotten to the point where it takes 2 adults to physically control him.  Last week him punched bob, kicked my mom and fought a sibling.  Yesterday night we had a huge blow up over him taking a shower and he tried to slam a glass shower door on Bob.  I ended up getting hit by the shower door above my eye (I now have a knot and a bruise) and this blow caused my head to hit the cabinet behind me.  This was the first time hitting my head since my surgery and boy it felt horrible.  We have no idea what to do with Jace and nobody has been able to figure something out.

Benjamin ~ He is all over the place.  He refuses to participate in class and never does ANY of his school work.  His teacher can't get him to focus or do his work.  Today she had him spend 2 hrs working on 1 worksheet and he only got 3 problems done.  He no longer wants to hug anyone and hates kisses or any affection.  He throws random huge tantrums that can last from minutes to hours.  He obsesses over things to the point where the whole house shuts down until the missing item is found or his problem is resolved.

Ariana ~ She picks at her feet and belly button to the point of causing herself pain and medical problems.  They have tried to wean her off her meds for overactive bladder and this means running to the bathroom sometimes 15 times an hr.  Makes for fun times at school and in public.  She's doing amazing academically in school, but can't keep focused and keep her mouth closed during class to save her life.  She's obsessed with death and loves to talk and plan and ask questions about it all the time.  She's stubborn as a mule and refuses to do anything, she will spend 4 days cleaning her room.

Elias ~ My little man.  He's mostly stable right now as long as you don't care about him shedding intestinal lining, pooping out full clumps of medication, grinding his teeth from possible pain, turning bright red and sweating profusely and having goofy labs that nobody can quite figure out.  He's also having eye issues and we are working to get his glasses and lenses changed out to see if that helps him some.  We met with his ENT today and we are a GO for surgery.  Eli will be having his tonsils and adenoids removed, tubes in his ears, possible nasal dilation, and a bronchoscopy.  I'm beyond terrified for how this surgery will go.  Pain management, airway protection, and bleeding control are big concerns at this point.  His surgeon is adjusting how they usually do this surgery to try to cut down on some of the issues, BUT that means a longer surgery which means longer intubation and more anesthesia.  Also because of the nature of the surgeries Eli will need to be off his blood thinners for 10-14 days after surgery.  That is terrify to think about. 

Bob and I ~ It's a day at a time.  Sometimes hour by hour.  My surgery recovery is going pretty well.  I'm doing more than I probably should because it's almost impossible not to in a house this busy.  This has resulted in sore muscles and daily headaches.  I'm just trying to get to a point in this recovery where I can almost be myself again, but that's not looking like it's going to happen.  The lower part of my skull and neck are very sore and still hurting quite a bit.  The middle and upper section of my head are so numb I can barely feel when they are touched.  Which makes getting hit in the head apparently so much worse, because I didn't realize how bad it was until it really was hurting.  Sleep is what I want to do, but that only happens at night now, naps haven't happened for almost 2 weeks.  It's nobody's fault, it's just life around here.  My mom leaves on March 10th so after 2 months it will be a big adjustment trying to keep up with it all around here.

So you say WOW that's alot of info.  It is.  It's the whole story.  Not just the sugar fluff.  Don't get me wrong there is lots of sugar fluff.
Ari is calling Bob "Dad" consistently and it's so adorable.  She flutters her big eyes at him and his heart melts.  Her drawing has gotten so amazing and she's very talented. 
Ben is at times so adorable and loving and once in a while will just walk up and climb into my lap.  Sometimes he will go to Eli and give him hugs and play with him without any prompting.
Jace can be the most loving helpful kid ever if he wants to be.  He is amazing with Eli and their relationship is so fun to watch.
Emily is getting so good at the violin and we can really hear her progress.  Her love for music is blossoming and she can be heard singing thru the house.
Eli is learning how to pick up his toys and loves to help with laundry.  He's learning how to do puzzles and really enjoys them.
Laughter can be heard often thru our home. 

But we have real fears.  HUGE terrifying fears that grip at my heart.  I'm terrified for every illness with Eli.  This upcoming surgery.  The things that could go wrong in the blink of an eye.  The thoughts of what is to come.  The guilt over missing 3 hrs with Eli if I run to the store.  The laying awake at night listening to make sure that I can hear him breathing.  The fears are all there and they never leave.   I look at Eli and I'm terrified for what lies before us, how long is left?  Could this be the last day, week?  Could this be the last time we hear that laugh or see that skill?  Progressive disorders are rough as it will get worse, yet nobody knows when and how.  Life can change in the blink of an eye...and not only CAN it change but it DOES change.

I'm terrified for who and what I'll be when this journey with Eli comes to a close.  I am so isolated from life and friends and family and the world.  I am Eli, I am an extension of him.  I feel as though we are attached by an invisible line that keeps us always close.  His information is constantly running thru my head ready to give to the first doctor or nurse who needs it.  I'm a vital piece of his medical equipment.  Every moment of my life is consumed with caring for him.  I am a shell of a person, I am soley Eli's caretaker.  I love every moment of it, but I'm terrified for when that is no longer my job.  I'm exhausted.

For now I'm exhausted.  This has been quite the mental and emotional post. 

***My final disclaimer.  All comments left must be approved by me first before posting.  I will not post anything that is inappropriate or threatening.  Also keep in mind that I have a tracker on the blog***

Saturday, February 2, 2013


Dear INSANE blog stalker.
Here is my surgery journey in photo.  I am very clearly not making this up.  I checked into my local hospital.  I spent 2 hrs being poked while they tried to get an IV.  I was wheeled into the operating room.  My head, neck, and brain were cut open.  Part of my skull and vertebrae were removed.  my head and necked were stitched and stapled shut.  I threw my guts up repeatedly in post-op.  I spent 2 terrible sick painful days in neuro-icu.  I spent 2 more days on the floor.  I had my stitches dug and ripped out of my head.  I feel the REAL pain from this REAL surgery every day in every aspect of my life.

Here is me and the bear my family made for me in Pre-Op.  I was wheeled back to the OR 10 minutes later.

Here is me in post-op.  I was nauseaus as hell.  They were giving me meds every hr to control the pain and keep me from throwing up.  I kept forgetting to breathe so they kept nudging me and reminding me.

Here is me a few days later after I got onto the neuro floor.  This was one of my first times sitting up.

Here  is my incision a few days after surgery.

incision right around a week after surgery.

my incision the day i got my stitches removed

my incision this morning


I haven't blogged in a while.  Mainly because I'm recovering from brain surgery.  This seems so obvious.  I'm exhausted.  Typing is something my brain is still trying to re figure out.  I have headaches alot.  I can only sit up for so long before my neck gets so tired, and for quite a while there the dizziness and nausea would kick in something fierce if I sat much.
I'm officially in PT now.  She is having me go 3 times a week.  It's not fun, but not horrible.  I really like my therapist and that helps.  Most of the work right now she does while I just lay there.  She's starting to have me do a few basic stretches by myself and we always end with this amazing heat machine that I'm in love with!  I've been wanting heat since my surgery.  I'm still not allowed on my neck or head but at this point my shoulders have been very nice. 
My incision is looking really good.  I'm still having quite a bit of discomfort, a whole lot of tightness, and sleep is a huge struggle.  I have my next recheck with my surgeon this next week.  Hoping he begins to adjust some of my restrictions.  I'm still currently only allowed to lift 4 lbs.  That really covers what's going on with me physically.  For me currently all Mito testing is on hold until I'm farther into my recovery.

The 2nd not at all obvious reason to not blog much lately is a hateful comment that I received and wasn't able to respond to.  I have NOT brought this on myself.  I can not give myself a Chiari Malformation OR Mito.  These are not something that you can just go and get for yourself.  You can't do something to cause them.  You can't "catch" them from a sick person.  You can't will them to come into your life.  I did NOT bring this on myself.  I did NOT ask for this for myself.  I sure as HELL didn't ask for this for my son.  I didn't ask to suffer.  I'm hating every fucking day of this and how it makes me feel.  I would do it over and over though if that meant that I could take it from my son.  This is hell on earth and until you have lived it you have NO fucking clue and you have NO right to talk.  Children and adults are dying and NOT one single one of them has done anything wrong.  They haven't asked for this.  Neither have their parents, or siblings, of families, or friends.  This is HELL on earth and this is also our HEAVEN on earth.  The torture that my family and so many other families go thru is HELL.  It is unbearable, unimaginable, and not able to understood, only felt by those living it.  It is also our heaven on earth because the strength we learn and the blessings that we endure and the HERO's and friends that we meet along this journey are amazing.  It is also unimaginable and not able to understand, but truly to be felt deep down in our hearts and souls.  We are all connected in these journeys, as separate as they may be we are all connected by what we live each day, in the Chiari community and in the Mito community.

My family.

Emily ~ Emily is at such a tough age.  She's stretching her boundaries and pushing her independence.  She's exploring her power, and seeing where she can dig in and refuse to give.  She's dealing with some very typical pre-teen issues.  There's been missing work, rushed work, forgotten assignments, skipped work, missed chores, arguing, eye rolls, hair flips, and TEARS.  oh the tears.  Love the pre-teen emotions.  From what we hear from the other parents and the teachers this is a common theme thru a large group of the 6th graders this year.  The last year of elementary school.  How time flies.  She's staying busy with school, violin, choir, and babysitting.  She's still in her school orchestra as well as the advance 6th grade orchestra.  She's still active in choir and loving music as much as ever.  She babysits at least once a week, sometimes twice.  Tonight is her first overnight babysitting (the parents are there).  It's her regular customer.  The youngest daughter is having a b-day sleepover and they have asked Emily to help with the overnight party.  It should be fun for Emily and definitely a bit of babysitting variety!

Jace ~ Jace is struggling in school.  The work is getting harder and he's really struggling to keep up.  It takes him alot more time to process the information, especially if it is written.  The math concepts have gotten more confusing and even reading them aloud now isn't proving to be enough for Jace.  We meet with his teacher this week, as his teacher is equally concerned.  Jace is doing well in speech right now, and is being alot more willing this year to spend some extra time focusing on his speech sounds.  They are definitely still a struggle for him, but at least he's trying this year.  When he's not in school he's home begging to be outdoors.  He doesn't care to much about the cold weather and still prefers to be outdoors as much as possible.  He's been outside almost all day today with a friend.

Benjamin ~ Ben is Ben.  I feel like that describes him perfectly to all that KNOW him and says nothing to those that don't.  Ben is set in his ways, as deep as always.  Life has to happen Ben's way, the same way, every time.  He's struggling with focusing in school and is constantly behind on his school work.  He refuses to try and rushes sloppily thru it all.  His teacher is lucky to even be able to read his work.  His teacher this year doesn't push Ben to do his best work and she allows him to skate by with almost nothing.  It hasn't been a great fit for Ben.  Socially Ben has made some great strides.  He has his best friend at school(for 2 yrs now), and even has a few other friends as well at school and in our neighborhood.  He still tends to parallel play alot, but will actually get involved and play as well.  His new favorite hobby is origami and paper airplanes.  He went thru an entire pack of computer paper in no time flat.  He's always looking for books at the library or grabbing an ipad to go to his favorite origami websites.  If he finds you on pinterest he'll hang over your shoulder looking for projects as you scroll.  He's also discovered that he has "lines on his belly" and loves watching his abs and is so proud of them.

Ariana ~ She's LOVING kindergarten.  She's reading simple books with minimal help and has advanced to the next book program in kindergarten.  Her writing has improved so much this year and she's even trying to sound out and write her own words and sentences.  She's the social butterfly, so always making friends and having fun.  She's loving her new haircut and is happy that she can still wear bows.  Sometimes I still look at her and almost panic that all her hair is gone.  After having long blonde hair to her bottom for so long this chin length style is a big change.  It fits her so well though.  Totally goes with her princess sass!  Her birthday is coming up on the 13th and she's super excited to be turning 6!  She loves that she's getting so big.  I think age is most important to her, way more than it's ever been for any of my other kids.  I'm guessing that's what happens when you have 3 older siblings and you are as strong and independent as Ari is.  She's by far my most stubborn as well, which can be interesting!  She's finding a love in music as well, and has to have it to sleep.  She loves to always have her toe nails and finger nails always painted, preferably in pink or purple!

Elias ~ My little man.  He's doing well and struggling all at the same time.  I know that doesn't make alot of sense.  He's running higher temps every day.  He's having pain to the point of grinding his teeth until given pain meds, but we can't find the source of the pain.  His keppra levels are still struggling to come up and that's WITH doing the meds thru his IV.  His finally back at a good point with his secretions.  His intestines are still not super happy with us but for now they are chugging along.  He's developing some new rashes.  His thrush is finally gone.  He's signing way more, and even on certain things he's consistently combining 2, sometimes even 3 signs together by himself!  He's using his polite words; thank you, please, sorry, help, excuse me.  He's beginning to label more things with sign as well!  He's loving his dress up set, basketball set, and bowling.  Jace and Eli love to bowl together.  They set up the pins and hold the ball and run at the pins falling over together knocking them all down.  This results in huge belly laughs from Eli.  Something we don't get often, but love so very much.  When Eli starts his big belly laughs everyone in the house tends to stop and come and watch.  It's mesmerizing.  It's normally his siblings who get them, when they play rough and silly with him.  It's my favorite time.  It's so normal.  So normal it's almost scary sometimes.  For those few moments they are simply siblings, on the same level.  There is nothing different about Eli.  Melts my heart. 
Eli's primary doc is passing time and keeping Eli stable until farther into my recovery.  Once I'm stronger the goal is to get Eli's big surgery done quickly.  Tonsils and adenoids removed, and tubes placed in his ears.  He really thinks this will make a big difference.  He seems a bit to optimistic, but my mommy heart is always guarded, history has shown that Eli's body doesn't always follow doctors hopes and plans.

Bob is well.  Busy as always.  Trying to keep up with all of life!
As most of you know we will be moving a block away.  14 months in this home.  There are some things we are sad to leave but because of health and home issues we have no options left.  We are staying in our neighborhood, school, all of that.  We were very lucky to find a home available right by us!  It is even larger than our current home and will allow the master bedroom and Eli's bedroom to be on the same floor.  This eliminate stairs for he and I!  It also has a working garage which is very much needed with Eli's wheelchair!

I would love to tell you that I will update soon, and that I promise to stay current and up to date with it all.  But currently I make no promises.  You can always find me on facebook which is updated often, especially with pics!  I will end with 1 of my favorite pics lately!  I was able to prop Eli one evening before bed for some super special mommy and baby cuddles! 

oh and one final thing to the lovely person leaving comments and saying cruel and completely inaccurate things on my blog...FUCK OFF!  oh and have a lovely afternoon!