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. 

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Jancy said...

You guys are so amazing. Even in the hardest of times you still post positive views. The tough times are sure to come...some weeks it will be daily, some weeks not at all (or at least we can hope). Through it all, you are one of the most beautiful, loving, and joyous families I have ever had the priviledge to meet. You always have a smile, a word of encouragement, or a hug...just at the perfect time. I can only hope that, as your friend, you receive such things from me. I hope you realize that, although isolated, you are not alone. You have friends who pray for you always. You have friends who will support you through the worst of times if you will allow them to. You have friends who love you and cherish your friendship and all of the wonderful medical knowledge you have to share. You have friends who remember great times and horrible times all shared over cheesecake and laughs. I love you guys. I will be here if you need me. I will pray and watch and read and laugh and joke and cry and hold your hand. You are so precious to me. Each and every one of you. May God bless each moment of your journey. Remember that these trying times are blessings in disguise that you will someday look back on and smile.

Stacy Stechman said...

Wow I don't quite know what to say. You and your family are such a strong family. To this day I don't know how you do it. You are such an amazing woman that I look up to for support and in awe. I often think if she can do this than so can I. I will leave one word of advice to you that someone told my husband and I when my cousins were abducted and later found murdered... you will find a drive in you that you never knew you had, a drive that will consume you to make a difference. That is what you are doing Heather. You will find that drive to help educate and help find a cure for mito and all of the other diseases and sicknesses that your family is going through. You will find that drive...

Sara Nolte said...

Heather, I must say please don't ever apologize for what you say, how you say it or when you say it. You're voice (posts, rants, explanations, joyous pictures) are very humbling. You ma'am are stronger than you give yourself credit for. I would have wanted to give up. I've enjoyed watching as Eli has grown and developed. I've enjoyed watching all your children grow, accomplish, dream, develop and frustrate you, simply because that's you. You are a very blessed family and you take NOTHING for granted. I wished more of the world would pay attention and learn, Lord knows I have been trying. Good luck and God Bless!