Frustration

Not the Woman

December 9, 2011 By Kristen 4 Comments

I’m not the woman I once was.
That thought keeps gnawing at me.
Chewing at my heart.
Chomping on my self esteem.
Cracking my smiling exterior.

I feel fake. Faking that former me.
I want to laugh. I want to say, “Fine!” when everyone asks how I am doing.
I am used to shrugging when people ask me how I do it all. I have the routine memorized…
Shrug. “You just do.” Smile. “We are very blessed.”
We are very blessed…. that part hasn’t changed.

Just me.

I feel like I am clawing my way out. Nails scraping on the side of the walls. Refusing to slide down.

I’ve been unable to do it all myself. And it sucks. People offer to help… but so often they really don’t know what to do. I mean… they can’t come and stay up late at night for me. Take away my mother’s worry. Replace me at a doctor’s appointment. Replace my attendance to the twins. And I don’t want them to do that.

I might have figured out a way to relieve some of the stress. But, I’ve had to ask for help. And it sucks.

Not only that – but I’ve had to be very frank about Alexander’s medical needs. Our familial needs. When you list them out… WOW – reality check.

I hate to list that list. Because that list is depression. That list is pessimism. That list is darkness.
And right now – that list is our best chance. At hope. At optimism. At light.

So… I’ve jumped into the well – feet first. I had to jump. To save myself. I had to jump into that dark place. And … now – I’m clawing out. Hope by bit of hope. Until that sunlight shines on my face again. And I can be that girl I’m pretending to be.

The one who smiles and says, “No worries.” “We’re amazing.”

Because the truth is – most of the time – we are amazing. The rest of the time, I don’t dwell on it.

It’s just that stupid list. That list of all the things that are not “perfect.” … or even close.

*Sigh* …

Filed Under: Uncategorized Tagged With: Battling the Demons Within, fears, Frustration, Parenting

It is So Much Work

November 30, 2011 By Kristen 17 Comments

I need to choose my words carefully. I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools. For children with special needs. These … amazing resources. They give life (literally) where life would not have survived. They change lives.

- In the literal sense… Alexander’s feeding pump has saved his life. His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it. You have no idea how hard that is to actually say. Because the reality is I hate that thing. I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it. Alexander didn’t use the pump regularly until last spring. You can read that post HERE. And…. then he just didn’t eat enough. Went way down hill….. This past summer, there were days where he was not oral at all. *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained. I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve. Sometimes older children are scary. But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part. To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child.

Don’t get me wrong. Alexander is the hardest worker I know. He puts more energy into sitting up than I put into any activity. And often I find it ** tactless ** when parents of children with special needs whine. This is a little different. It is not a whine. It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.

In case you missed it … Alexander is eating now. And I mean eating like a champ. He is almost 100% oral. I say almost because he is probably just shy of his caloric mark. Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach. (In all honesty…. easy) There are other things that go into it… but you basically figure out the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy. And now… It is a ton of work. Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in. Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter? How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload? How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea. It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow. It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

* The same respect, every piece of physical therapy equipment takes so much work. Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating. We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice. It is labor intensive and … work.

It is really a labor of love. I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son. But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore. So much work.

So next time you see a parent of a child with special needs. Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it.

Thanks Shell…. For letting me Pour My Heart Out.

Filed Under: Uncategorized Tagged With: Frustration, Inspirations, Misunderstanding, Parenting, Physical Therapy, Special Needs, Sweet Child of Mine

I’m Not Going to Play Nice

November 8, 2011 By Kristen 6 Comments

I’m tired.
I’m tired of always waiting to post until I can see “what lesson can be learned.”
I’m tired of always trying to put things into perspective.
I’m not going to play nice tonight.

Mr. EMT.
Yeah – you. The one who had control over my son’s life. The one who came into the ambulance. The one who told me I couldn’t ride in the helicopter again.
YOU SUCK.

Mr. EMT.
Yeah – I’m still talking to you. The one who think’s he’s God. You are NOT. I know what my child needs. I know how my child acts. I know my child. You just met us. Take a minute and listen to me.
YOU SUCK.

Mr. EMT.
Yeah – I’m not done yet. I was still talking to you when you took my baby away. How did that make you feel? Powerful? In control? Did you know I was rendered speechless? Did you realize I was still explaining what Alexander would look like when he came out of a seizure? I guess you didn’t hear my request for the E.R. to call when my baby arrived…. because they never got it. You were probably too busy walking away from me. You never even let me say goodbye. You just turned – in the middle of my descriptions of Alexander – and walked away.
YOU SUCK

Was it that terrible to hear a mom ask to ride in the helicopter? Did you feel you needed to teach me a lesson? Or did you just not want to hear my request? Did you decide I wasn’t worth it? Alexander wasn’t worth it? What would have happened if you didn’t recognize his seizure? What if something happened to him because you didn’t know about his: seizures, non reactive pupil due to a cataract, low muscle tone, mickey-button, small veins, blue hands/feet that are normal, etc. Those are things you should know before you take him away. You didn’t even know what medicine he needs to break a seizure. And… thanks to you – neither did the ER. Did you know that I got to drive an hour and a half with that knowledge? Does it bother you?

No. This isn’t a nice post that ends with … Well – everything happens for a reason at the end.
I don’t care.
Maybe tomorrow – in the morning – I will have a different opinion of you … Mr. EMT.
I’ve never written something really bad about someone on my blog. But this is real life.

I can deal with the seizures. I can deal with it all. Because Alexander takes it all in stride. I can learn from my son to be content with what I have and love people mercilessly.

But… Mr. EMT – you need to remember that every “case” you have – is or was someone’s baby. Someone has entrusted you with a loved one. Tread carefully…. because a little compassion can go a long way.

Thanks for all the prayers. Alexander is amazing. He is strong and sleeping in the bed. We are pulling an all nighter’. Thanks for letting me be a little “real” on the blog. So often I wait until my emotions don’t write the post – but tonight… I just had to get something out.

Filed Under: Uncategorized Tagged With: fears, Frustration, Seizures

The 2 headed Monster

October 5, 2011 By Kristen 14 Comments

I’m not bi-polar or manic depressive… although sometimes I feel that way.

Mothers – picture this. You wake up. Babies are sleeping, and you make yourself a nice big cup of coffee. You sip it leisurely as you catch up on your blog reading list for the morning. You smile and feel completely blessed as you hear a soft conversation come from the children’s’ bedroom. You let them out and….

Everyone starts screaming for something different for breakfast. They speak to you like you are a maid, not a mother. You are given demands as one pulls another’s hair. They wonder over to your freshly folded laundry and rip the towels down off their pile. They tell you they want to help. They scream and wake your youngest baby up. They throw food on the floor and your house is demolished in less than 5 minutes.

Bye. Bye. Tranquil morning. Hello nightmarish day. Feel a little rollercoaster coming on?

That light switch is constantly being turned on and off in my world.

My friend came into my room today and saw this:

She is also my friend on Facebook and knows that I spent almost this entire weekend force feeding a child that didn’t want to eat and couldn’t handle the volume of calories necessary for growth and nutrition. In fact, last night we did something we’ve never done… we used the “pump” during the day.

She looked at my letter to my students and said, “How did that work out for you?” I said, “Great!” …. silence … She said, “Really?”

She saw what many people don’t. The public persona versus the private worrier. The *switch* that can occur on a moment’s notice. The 2 heads of special needs. I switch between feeling blessed and feeling frustrated.

This morning I felt frustrated. Hours of phone calls with no answers. A disagreement between doctors and pharmacists and a distrust of things that are not shown/explained to me will do that. I don’t blindly follow. I want explanations. There is a discrepancy between the medicine dosage the doctor prescribed and the dosage we’ve been getting. It is somewhere between 7 times too much and 7 times too little. And somewhere in the middle is what Alexander needs. (Frustrated)

During my planning period I walked down to see the twins as they finished Preschool. *switch* They were all smiles and giggles. They reminded me of why I fight so hard for my children. They made me laugh as they showed me their latest project. (Blessed)

Later this afternoon, I called home to check on Alexander’s day. *switch* He’s eaten absolutely nothing. sigh. What happened to my little boy who ate pancakes? Where are you? Slipping in and out of the land of “oral?” (Frustrated)

I take another phone call. *switch* Alexander’s been accepted into a “preschool” program. It will be one morning a week and is integrated with kids with special needs and kids without. I’m thrilled that he will get all that stimulation. (Blessed)

On the way home… the feeling of exhaustion sets in. *switch* The antihistamines make me tired and I’ve spent the day smiling. I find myself reflective… not happy or frustrated.

I take a few minutes to re-charge at home and *switch* The blessings flow back into my heart. My husband is healthy. My children are all home. Alexander is well cared for by his nurse. The kids are wound up and running wild. All is right with the world. (Blessed)

Are you getting the picture yet? Sometimes it doesn’t happen as quickly… sometimes the *switch* happens from moment to moment. I decided to lay it all out on the line because I believe I am not alone. If you ever talk or read something written by someone impacted by special needs… look closely… find the *switch*
It might seem like they fluctuate. I’m fairly good at hiding the frustrating moments, but that doesn’t mean I don’t have them. I just wanted to put a voice to all those who *switch* as life leads them… not the other way around.

Once again, I’m pouring my heart out with Shell :

Filed Under: Uncategorized Tagged With: blessings, Frustration, Medical Issues, Special Needs, Teaching

Yesterday I Cried

September 14, 2011 By Kristen 9 Comments

Alexander had a seizure. His first one since June. Our third week back to school. And I cried.
I cried as I left the building. I cried as I drove home. I cried when the helicopter told me I couldn’t ride with him, and I cried when we were stuck in stand-still traffic for over an hour on the interstate. There were moments where I felt such self pity. I will not lie. Why wouldn’t they just let me ride with him? Why wouldn’t they just let me ride with him?

As I posted yesterday… Everyone has moments where they just… break down.
My post yesterday wasn’t meant to demean those moments. No matter your circumstances… we all have them. No one’s “circumstances” are bigger or more than another’s.

In my world, I hear people complain about losing sick days. They complain about the interruption of their schedules. I hear people complain about … everything … which was my rant yesterday.

But… my tears were just mainly for my baby. He seized for 5 hours. The why wouldn’t they let me ride with him? – was for his sake… not mine. They stuck him several times because I wasn’t there to tell them not to. They gave him medicine that doesn’t break his seizures because I wasn’t there to tell them not to. His poor little brain seized for hours because the drug that “breaks” his seizures couldn’t be given until we got there…and that took almost 2 hours in traffic.

I just want to kiss it all and make it better. I want to hug him until the seizures roll by. Mommies should be able to do that. Mommies should be indestructible.

Truth – I cried for both of us.
Truth – I cried for him. Because in the end… I just want him to be ok / happy / feel better.
Today – I am thankful that he “outgrew” his medicine dose.
Today – I am thankful the Keppra is still working (just at a higher dose).
Today – I am thankful his seizures have stopped.
Today – I am thankful I have a job and coworkers who cover for me when I have to leave.
Today – I am thankful this happened this week instead of last (see news story HERE.)
Today – I am thankful for the friends and family members who prayed for us …. over 100 e-mails, texts, calls, and Facebook messages (I counted.)
Today … I will push away the anger and frustration of a few moments and focus on those things still to be THANKFUL for.
Today – Alexander is crying because he’s ticked we are still here. What a sweet sound that is.

I debated. I wasn’t going to link up – because this post needed posted today no matter what day it was…. but – so many people over there have been following our journey – here it is.

*** We are Home ***

Filed Under: Uncategorized Tagged With: blessings, Frustration, Letter, Medical Issues, Seizures, Special Needs, WHS

STOP WHINING

September 13, 2011 By Kristen 16 Comments

Stop Whining.

I can’t take it anymore.

If I have to hear one more “woe is me” story about how terrible your life is because you have a child with special needs, I am going to smack you. Or Facebook defriend you (which is like the same thing.) Or just stop talking to you. Because – it not only makes me sick to my stomach, but it is really starting to piss me off.

Stop Whining.

No one feels sorry for you. Because they shouldn’t. You know what?
Everyday – you wake up and get dressed. You have a conversation with other people. You walk around. You eat your meal. You don’t have seizures. You don’t have special needs.
News Flash: Your CHILD deals with these difficulties. Your Child. When I look at Alexander – he smiles. Doesn’t your child? And yet, You make references as to how difficult your life is? Why? Because you have experienced seizures that last for hours? Why? Because you have been poked and prodded and stuck repeatedly – because you have tiny veins? No. These things happen to your child. Where is the sympathy for your child?

I’m just tired. We all struggle. Lack of sleep, marital issues, feelings of negligence toward our other children. We all understand. We all want to support each other. There are times when all parents have down moments. There are times when all parents need to vent, share, and express our worries. But – your worries seem less about your child, and more about you.

I have friends, in real life and on the internet who live my greatest fear, and pity themselves less than you do.

I can no longer be friends with people who continue to pity themselves for struggles their children face.
When a child is living, smiling, hugging, … begging for love – and all I hear is how tough your life is … I’m just frustrated. Try giving your child a break. Try empathizing with your child. Try asking for prayers for your child. Try not to ask, “why me?” There are lots of people who would love to be where you are. With a child who just loves unconditionally. And, frankly – I can’t take the whining anymore.

*Exception… Parents who just receive life altering news. You are entitled to grieve in any way you know how… for the loss of your dreams, etc. Having a child with special needs can be a lot to absorb… Everyone understands if it takes you some time to adjust to the news.

Ok. Go ahead. Let me have it. I know this is probably the most … aggressive …. post I’ve written. You can feel free to let me know if you agree or not.

Filed Under: Uncategorized Tagged With: Frustration, I've Got an Opinion on Everything, life, Special Needs

Joking? I can’t believe you just SAID that….

August 15, 2011 By Kristen 6 Comments

Secret. When I was in high school I helped out with the special Olympics at my school. I was a senior and … thought I was big stuff. You know what I said while outside working the special Olympics? “That is so retarded.” True story. I immediately was mortified. In my defense, I was 16 and realized my mistake. My face turned red, I walked away – so embarrassed that I would say something so crass at a function so important.

I told you that story so you could know that I’m not standing on my perch preaching down to you. I’ve been there. I’ve said and done and thought a million things I’m not proud of. But… now – things are different. I believe I am hard to talk to.

Lately we’ve been spending a lot of time with friends, family members, and people we don’t talk to on a regular basis. They aren’t used to spending time with me. They aren’t used to having conversations with me. Something is said and I’m offended. Something is almost said and everyone stops. Someone is talking to me and they suddenly just trail off…. I’m over sensitive. The world is not sensitive enough.

I teach about social situations. I HATE hate. I try to live tolerance every day. And you know what? Other people around me live tolerance also. I do not associate with bigots. They don’t make crass statements about women, people of other religions or ethnicities, or just… people in general. Except. the. helpless. Why is it ok to make fun of people with special needs? People like my SON.

Oh – here’s a list of the things I’ve heard in the past week or so…

I stopped by a blog I thought would be awesome. I was reading it and getting ready to comment on how witty she was. And then – there it was – in print. The “R” word. Yup. “When I run, I look retarded.” Thanks. Thanks for putting yourself out there with my SON who has spent every ounce of energy trying to sit up and I pray one day runs. JERK.
I’ve seen first hand people using physical gaits, hand tics, and non – verbal sounds … (you know what I’m talking about) because they think it is funny. That might be my SON someday. JERK.
“That person is going to ride the short bus.” Guess What? My SON has a nurse that stays with him every day. I’m pretty sure he’s going to ride a short bus to school. JERK.
“That person is special.” JERK.

*sigh* That doesn’t even begin to touch on the number of conversations I’ve had where people begin down that path and realize what they are going to say and just …. sort ….. of ….. trail…. off…..

I can’t fix the world. But, women can stand up for themselves. Minorities can stand up for themselves. People of different religions can stand up for themselves. Who will stand up for those who can’t stand up for themselves?

And stepping down from my pedestal – I’m guilty of things too. How many times do I say, “You almost gave me a heart attack!” What if that person lost a loved one because of a heart attack? Or, “If I hear that one more time I am going to shoot myself.” (If you are thinking of THIS POST – no worries) … but – honestly – how inappropriate is that statement? Am I a JERK?

What are we going to do? Will there be a day when you can’t say anything without offending someone?

I guess I’m just trying to wrap my head around this. I hear it. I hear people say we are to “Politically Correct.” and I can see the validity in their statement.

But then I hear the jokes. I see the people making fun of … the person that could be my son. And my heart breaks. My mommy gut shifts into high gear. I want to scream. I want to lash out. I realize I will alienate the other person… they didn’t mean it. They didn’t mean to hurt my feelings.
They don’t think about Alexander that way.

Truth…. Weather you like it or not – most of those things apply to Alexander.

What will that person (who thinks it is funny today to stiffen their arms and gait around and make noises that sound like words) do … if someday Alexander uses ALL HIS ENERGY to walk and manages a gait and ALL HIS ENERGY to talk and doesn’t enunciate his words properly.
I will clap. I will be proud. Tears – proud tears of joy will stream down my face that Alexander is walking and communicating.
Will that other person feel pride? Will they continue to use the same joke?
Or… will people just avoid us because they are so worried they might offend us?

Thoughts? What gets tossed around that you think should end – once and for all? Do you think I’m too sensitive? Go ahead – give it to me!

Filed Under: Uncategorized Tagged With: Frustration, I've Got an Opinion on Everything, Misunderstanding, Special Needs

The Same Story told 2 different Ways

July 28, 2011 By Kristen 3 Comments

There are lots of small town fairs that pop up every summer. There is the one that contains 3 rides, a little music, and lots of people – mentioned HERE, and there are more traditional one week carnivals that move from town to town. Yesterday was the “kiddie” day – where you paid one price to ride all day. We packed up the kids and headed out at promptly 10am so we could be in line, ready to go, at 10:30.

Part 1.
We were in for a complete shock when we got there. There were at least 100 people in the line… at least. We went to the other line for tickets and that line was equally long. I stood in line while the kids and Ray tried to keep themselves occupied.. all the while becoming more and more whiney. Not only that, but I was a little concerned about the heat factor and Alexander. Finally – 45 minutes later – I got to the front of the line, handed my $26.00 and received… a ticket. With instructions to go stand in another line to get the “ride all day” bracelets for the kids. Are You Kidding Me?!? I turn to look at the other line… at least another 45 minute wait. You have got to be kidding… I was so irritated. I actually asked in the booth to whom I could complain. (Please trust me on this… ALL the parents were upset at this point in the line). No sign was out to say it would be another wait. I have 3 kids under 3. Almost 2 hours wasted standing in line… my kids are going to need a nap soon at this rate!

With whom to express my displeasure???? This woman at the booth sent me to the lady in the Cotton Candy Stand. I promptly gave Ray our tickets with instructions to stand in line and walked over there to explain how this set up was probably the dumbest thing I’ve ever seen. The Cotton Candy lady was flabbergasted. “Not my fault.” “Go see the Fair officials.” No problem, Lady. So Alexander and I walk to the other end of the fair and (ummmm.. explain) to the fair officials that this ticket set up was the dumbest thing I’ve ever seen. “It’s not my fault… I don’t have anything to do with it. Go see the lady in the first ticket booth.” No problem sir. I’m not going away. You see… obstacles can be a stumbling block… or they can be a motivator. I was a motivated mommy. When I arrived at the first ticket booth you will never guess what they said…. Yup, It wasn’t their fault either. I needed to go speak to a woman (they gave me a description) at the ticket booth I had originally left from. Do you see a little foreshadowing here?

The original lady. The lady who sent me away. She was the one who made the decision to sell the tickets like this. When she saw me coming, I swear her face turned 2 shades of grey. I marched right up to her and asked her if she remembered me. Mother of 3 kids under 3? We’ve been here for 2 hours without riding a single ride yet? It is in the 90’s? Her face got a little redder and she said yes. I’m not going to lie. I had been sent on a wild goose chase, was hot, and really angry. I used my “G” rated vocabulary, but I did give her a big piece of my mind. And… no lie… the crowd of moms around clapped when I was done. No lie. So – they are going to sell the tickets differently next year. I offered to come in and give extra help if that is what they need. I left my name and number to call me next year. And we spent almost $30 for an hour of fun before the kids were just too hot to continue anymore.

I could choose to remember yesterday like that. I could let that be the imprint in my mind. OR…. I could remember this.

Part 2.
Love, Smiles, and Sunshine.

Sweet signs for lollypops and other things candy. Love.

We really didn’t have to pay for any games…. The kids would have been totally ok with riding the tractors for sale all day. Addison kept saying, “Just one minute! I have to shift the gears.” Love.

Stores set up in the middle of the walking isles. You can buy anything your heart desires…. Love.

Need to catch a dream? Make a wish? No problem. Love

Dream big Little Buddy…. Reach for the Stars Big Sister…. Love.

It’s my parental right to snap the picture of my kid screaming on the ride… right?

Because in the end – there is nothing quite like fair fries. Loaded with salt and dripping with Ketchup. The rides that blow the wind through your kids hair on a hot summer morning. The people you see – that you haven’t seen in forever and they all rush up to greet you like long lost pals. Because you are long lost pals. Homemade ice cream. Some guy demonstrating how to climb the rock wall. Cotton Candy (even though I don’t think they will let me near that booth any time soon.)

Next year I’ll go back to the fair. And these are the memories I want to have from that day. You can focus on the bad things that happen… and let them hurl you into a ruined moment that lasts a day and ends up being a week. Or – you can push aside those moments of irritation and capture the moments of smiles. And choose to remember the smiles. I will put away part 1 and remember part 2.

What is your favorite summer fair memory?

Filed Under: Uncategorized Tagged With: Family, Frustration, life, Memories, random

Run Around

July 16, 2011 By Kristen 1 Comment

(At the request of my husband – names of specific insurance companies have been omitted.)

Dear Insurance A,

I’m sorry my son needs so much. I’m sorry you got stuck being our “primary” health insurance. If you could please stop sending us those “coordination of benefits” forms for us to fill out – that would be a help. Ray is older than me. Next year, guess what? He will still be older than me – thus… you will still be primary. Funny…. age sort of works like that. I realize you would really like to pass the buck on this one…. but – you are costing me man hours that I don’t have.
So, you’ve basically denied almost everything we’ve submitted to you. That’s awesome, by the way. You know I pay into my health insurance every month… right? Again… sorry you got the short end of the stick. You got stuck having to actually pay out rather than just collect.

You denied our nursing hours, almost all of our extra medical needs, and here is the kicker… you just denied Alexander’s stander. Yup. You don’t think it is medically necessary for him. Just a quick question – what criteria exactly do use to determine medically necessary? Really? What is it about Alexander that makes you think he doesn’t deserve a stander?

Total hours on the phone with Insurance A for this one issue = 6 and counting. We are in our second appeal. Seriously… You’ve seen pictures. How is it that he doesn’t need the stander?

Dear Insurance B,
I’m so glad that I have you as my health insurance. Seriously, you should be thrilled… you are the secondary. Insurance A has to first deny us. Oh, what is that? You defer to what Insurance A says? How convenient for us all. So basically, if Insurance A approves our claim (and coincidentally pays for it), then you will approve it also… hmm – that costs you $0.00, right? Or if Insurance A denies our claim (and decides not to pay), then you will deny also… hmm – that costs you $0.00 also, right? How nice for you. You do remember that I diligently pay my health insurance premium every month, right? I mean… we are “teachers” – we get the best medical coverage there is.

Dear Medical Assistance,
Is it any wonder you get a bad rap? You seem to be the only one who will approve us for anything. Thank you for the nursing hours. Thank you for approving the stander. But it shouldn’t be this way. No wonder the tax payers are so upset. You are the only one who seems to understand that Alexander has potential and should get some extra help.

I’m trying to be totally honest here about our situation so you can really get an idea. Ray and I should be on top of the world. We are both teachers – so you know we have great health insurance. Ray’s is primary – Insurance A and mine is secondary – Insurance B. Then Alexander is also covered by medical assistance.

You know what we are? Their worst nightmare.

I think a lot of families with extenuating circumstances are frustrated. I read about this frustration all the time. The problem is, most people have a really difficult time expressing these thoughts without sounding bitter. And, maybe I sound bitter too. I’m not. A little frustrated. It seems we are always on the phone with someone about some services. Probably 3 hours total just yesterday… just getting the run around on this stinking stander. Appeal after Appeal. The truth is, my son will have the stander – and I’m not bitter – but I’m not a quitter either. The insurance companies want to outlast you. They hope you will give up before they give in.

If you’ve never been in this situation before – congrats. If you end up in this situation – don’t give up. And … if you are already traveling this path – we are right there with you. Out last them. You can do it!

Filed Under: Uncategorized Tagged With: Frustration, Medical Issues, Special Needs, Sweet Child of Mine

The Isolation of Special Needs

June 23, 2011 By Kristen 2 Comments

I feel sort of isolated at times. I feel sort of offended some times. I feel sort of sad sometimes. As I feel new relationships grow and blossom, I see other relationships fracture. I hate it when people say, “Oh I understand… because – (insert reason).” The truth is – only about 500 people understand. Social Isolation

*** No LIE – an example of this JUST happened after I wrote the paragraph above. About 5 minutes ago, I went back – stopped Alexander’s feeding pump, unplugged it, gave him his 2 seizure medicines, replugged it in, restarted it, and came back out here to write this post. 6 sentences into this post – Ray says, “Did you unclamp Alexander?” (We have to clamp his feeding tube when we give his medicine.) And I hear it – the beep, beep, beep of his feeding pump. *sigh* So I hopped up and ran full sprint back to his room to unclamp his tube before the beeping woke up Alexander and the twins. *sigh*. So you understand that, huh? ***

I think the words, “I understand,” might be the most offensive right now. As much as we are praising the victories and celebrating our time together – almost no one else really understands what goes on here. People make casual remarks that hurt. You don’t understand – not even if you have lots of children or small children. At age 14 months did your child feed him/herself? At least partially? 45 minutes to eat an ounce or two is a victory. You don’t understand. At 14 months was your child sitting? standing? crawling? starting to walk? You don’t understand. I don’t measure our life by milestones anymore. Alexander will eat when he eats, walk when he walks, sit when he sits…. However – I also don’t tell someone with cancer that I understand… because I don’t. Social Isolation.

A few days ago I was asked an ice breaker question: What is the worst thing you’ve read? You know what I kept thinking? That article from this post. I can’t say that. This isn’t about my son’s special needs. I can’t ruin the ice breaker by telling everyone about that article. Instead, I answered another question with a useless answer. Social Isolation.

When people compare their lives to ours. This has caused my relationships to fracture. They don’t understand. Please don’t compare your ruined day at the park to our cancelled family outing because of an emergency trip to Hershey. On the flip side, I have a lot of friends who almost seem apologetic when they open up about life’s curve balls they were just thrown. They say things like, well….. compared to what you are going through. I don’t really feel that is ok either. A divorce is still hurtful. Problems with children are still hurtful. Illness is still hurtful. The death of a loved one is still hurtful. Even a breakup is still hurtful. I would love to lend support to my friends. Either way – I don’t think we should compare lives. They are just different. I can be a friend to you ~ you can be a friend to me…. But let’s not compare the realities we both face. Because the reality is that comparing is a terrible way to show support, and isn’t that what a relationship is supposed to be about? Social Isolation.

I’ve been feeling sad because I’m trying to put some boundaries up for the sake of my family. As much as I feel sad – I also feel rejuvenated because of this time spent with my children. I feel like I need to protect this. I need to make sure my family remains my number one priority. So I’m starting to put up some small walls to protect the sanctity of our family. And for each minute I try to pry away from outside sources to secure for our family – is a struggle. I have used the words, “we need this” too many times. I have mentioned Alexander’s special needs too many times. I have listed his specific special needs too many times. I don’t think about this stuff in this way ~ because it makes me sad. And who do I tell? Who would understand? Social Isolation

Sunday is our regional Wolf Hirschhorn gathering. Many of my now-closest-friends will be there. People who understand. People who will relieve me of this social isolation. People who will rejuvenate my soul – as they always do. This could not come at a better time. I want to live in the world of people. I’m ready to be out of isolation.