My lil Strawberry Shortcake!

Kim and Addison asked if Maddox and I wanted to go strawberry pickin.  Like usual, I came up with every excuse in the book why we shouldn’t go.  There is no way we can get there before noon, it’s nap time, I think it’s supposed to rain tomorrow, and so on.  This was one of those things that I knew I would have a blast when I got there but getting there these days is the hard part.  Kim who knows me well just waited patiently for my unconscious split personalities to make up their minds.  

Yes, I will do it.  Let’s meet at 10:30, I CAN do it, don’t let me back out - is what I tell her.  

And good golly, look what fun we would have missed if I had backed out (Thank goodness for patient friends). 

Maddox decided to make her own fresh jam right on the spot.  What a mess but lovely mess.

Thank goodness for summertime!

Maddox’s favorite animal at the zoo was the giraffes.  Here’s our attempt at a family photo on this hot sweaty day at the zoo.

We went downstate to spend a weekend with cousins (some that are visibly here to play with us and some that are about to arrive).  First we hit up a baby shower for Aunt Melissa, then to Birch Run to shop, spent a cozy night in the hotel (I love hotels), and finally it was off to the zoo with Uncle Bob, Aunt Erika, Anna and Emma.  Here are the highlights from the weekend. 

I have some more photos to put here that are in my hotmail account which has been hacked and is being repaired so please check back!  Scroll down a little farther and you will see the zoo photos.

This one is a mama kangaroo with baby in pouch, you can see it’s hand flopped out.

Jamie and Maddox had to crawl though a two foot, hot, stinky, dirty suffocating tunnel just to stick our heads out the mole hole!

By far, Maddox’s favorite animal at the zoo was the giraffe.  And yes, we forked over the 20 bucks for the rip off replica.

This picture makes me want to take a Caribbean Vacation!  

Happy summer ya’ll, it’s finally here!

Remember the 80’s anti drug commercial when they fry the egg and use the analogy of “This is your brain on drugs.”  That’s my brain, it’s fried.  Done.  Can’t fill er up anymore.  It hurts to think.  

Maybe it’s new mom stuff, maybe it’s mom of a child with disability stuff, or maybe it’s quite possibly what moms of normal children think about all day too???  

Please help me to understand.  

I would guess that this list below is twice the size of what the normal parent has to think about.  Am I right or wrong?

What goes on in your mind in a day because mine seems to me on overdrive?  I want to know if this is a typical or atypical day in your brain?  If it is typical, how do you manage?


In 48 hours I had to 

Contact the nationally known speech therapist from Rhode Island several times to: 
Figure out where she lived
If she billed insurance 
What time she could do the evaluation 
If she would be willing to drive to meet us halfway between Rhode Island and Philly
Find out how much plane tickets costs from Philly to Rhode Island
Contact the airport to see if I could rent a conference room and how much it would cost
Find a local hotel then....


Contact them to see if I could rent a room and how much it would cost
Check airlines for various prices on tickets to our CHOP appointment
Contact the Insurance Company to make sure all billing codes from CHOP are covered
Contact the schedulers at CHOP to make sure all appointments are on the same day
Look into hotels in Philly while at CHOP, didn’t book yet
Contact the schedulers regarding transportation options in Philly


Find out when our new Health Insurance plan starts 
Make sure that only 30 visits are scheduled between August and January or we get stuck with a bill
Call the schedulers to rebook all visits that were not conducted on the same day
Make sure that Maddox’s speech therapy sessions were on the scheduled
Reschedule Maddox’s home therapy sessions due to conflicts

Call Verizon to fix our internet connection
Call Verizon again to get our new modem installed 


Book airline tickets home to Nebraska
Call Delta to correct the issue with Sky Miles
Receive confirmation email with additional errors so called Delta AGAIN

Book hotel for our trip to the zoo this weekend
Create a list of items to pack for this weekend
Pick up shower gifts for Saturday
Made sure to book the dogs for the kennel during trip
Remember to give dogs flea medication

Contact support at Unitron to make sure a rep contacts me regarding new hearing aides.
Wrote a report for Medicaid for work
Return equipment to work
Email Apple to continue working on the error with this website
Email Saginaw Valley Statue University to correct issue with their email
Create a list of medical expenses for the year 2011

Get Maddox to all of her outpatient therapy visits
Have the house in order for her home therapy visits
Email the therapist some potential tools

All this is going on in my brain while being expected to find time to do the therapy that clinicians and educators think parents should be responsible for.....

I can’t do it, my head is bursting, I keep telling Scott it really does hurt.  He gets it, but not totally gets it because he just (very politely) asked me if I could do his laundry tomorrow.  

Dr. Jeckyll became Mr. Hyde.

On top of all this, I just found out that several of my friends that have kids younger than Maddox are starting potty training.  

Ohhh, I’d give anything to have peeing in a pot my priority.

As Annie says, “The sun’ll come out tomorrow.”

I believe if you look really close that IS a smile Scott is wearing.  

Ohhh the things he goes along with to keep his wife happy!

I owe you.

This Father’s Day will be a trillion times better than last year, I promise.

Who would have thought that a no nap day would have led to a perfect day?  I know I share the bad often, but today is good and it only took 17 months for it to happen.  Ok, more like 17 months for me to realize this could happen.  I have been waiting.  Maddox got up at 8:00, she let me sleep in, yea (I bet that could partly be the recipe for an instantly good day)!  

Unfortunately, we really don’t spend our summer mornings playing, my brain has to make sure everything we do notches off another developmental milestone and so yes being an OT has it’s disadvantages.  

Anyhow this morning, we worked on feeding using a spoon, walking with her grocery cart, stacking two blocks, giving one more, picking things up with a pincer grasp, and so on.  I glanced at the clock and we had to be at therapy in just over an hour.  I gave her a bottle and crossed my fingers I had worn her out enough to take a quick snooze.  Then I placed in her bed and instantly she pulled to stand, lifted her arm, and said u-bah u-bah. 

I sighed my here goes nothin sigh, picked her u-bah and went to our bathroom to get ready.  I took a quick shower and Maddox was able to safely entertain herself in the bathroom.  I thought to myself, this is nice, a place that she can play and not get into trouble.  

Haha....  Not get into trouble until she realized the drawers open.  Out came the toothbrushes, hairbrushes, contacts, hairdryers, makeup, toilet paper, etc...

I quickly packed a diaper bag and we took off to therapy.  My wonderful baby sitter usually takes Maddox but today it was my turn.  I packed my computer hoping to have a peaceful one hour mommy break.  It went nothing like that.  I walked in.  A co worker saw Maddox and snagged her, the director of rehab heard me talking and pulled me into her office to set a summer schedule up, the rehab schedulers had questions about speech therapy, then the physical therapist came and took Maddox .  It was chaos for me, and everyone had to get a hug, a kiss, or wave in from Maddox.  

You know what, I took a step back and realized because of Maddox and this situation, I have met all these caring people, made new friends, and connected into the therapy world like no other.   

Maddox usually works better at therapy without me present but I snuck in a glimpse.  This is what I saw.  I couldn’t have been a more proud mamma.

****VIDEO HERE****

After therapy we went to buy Daddy’s fathers day gift.  Scott and I usually don’t exchange gifts, we save for big things like new house projects and call those ‘our gifts.’  But this year I couldn’t resist.  

365 days ago, we didn’t feel like new parents celebrating our special parents day because we were burdened by the questions of will her heart be ok, does she have sleep apnea, will her eyelid correct itself, will her head shape return, do we need ankle braces, will her belly button heal, will she be two wearing glasses, are her kneecaps stable, etc....  

Scott, who didn’t even want kids to begin with - got a kid that is going to require way more time and investing than the average kid.  

He has given up hours of sporting events for hours of doctors appointments.  He has sacrificed Friday nights for carnivals downtown.  Softball tournaments are replaced by trips to the zoo.  Lawn mowing is replaced by therapy sessions.  

My wonderful husband has sacrificed his lifestyle just to allow me to fulfill my dreams of raising a family.  That is huge.  

Now, I know he sometimes reminds me of the spontaneous life we could have had without kids but this past year I have been able to capture some smiles.  If this photo tribute does not count for father of the year, I am not sure what the qualifications are!

Happy Fathers Day Daddy Scott, we love you.

There is more to say.  This post has only takes me to dinner time. I still have to finish commenting about the rest of our day.  We spent Friday night at home, making dinner.  Maddox learned how to maneuver her walker today and chased us around the kitchen.

****VIDEO HERE****

After dinner we watched a family movie.  We did the bath thing and Maddox decided eating the bubbles is her new favorite pastime.  After each dip, she would come up with a Colonel Sanders look that was priceless. 



          PHOTO COMING SOON



After the bath, we discovered we had an over tired teething baby.   Ahhh, the first “normal” thing that has occurred since she was born and I loved every minute of it.  For those mom’s who post about how rough teething is, how nobody got any sleep, how cranky their baby is... I’ll take it.  I’ll take it all.  Everyday we check and every day we hope the right number of teeth are in there, that the come in the right order, and most importantly, that they are shaped normally.  So many people make assumptions based on teeth and smiles.  We don’t want people to think she is not bright because she is missing teeth.  You laugh but think of the last time you took an odd looking adult with missing teeth seriously.  These teeth are so so important to us.  

Moving along.....Yes, a cranky teething, non napping baby is what I had at 10:30 last night but this is still the recipe for a perfect day when you have mostly bad days like I do.  Here’s why.


We put Maddox in bed hoping she would quickly cry the over-tiredness out.  For the first time ever, I had a desire to want to rescue her.  This is a new feeling for me.  In the past 1.5 years, I really didn’t care if she cried, if she was hurt, or if she needed me.  But today it was different.  Deep sigh, finally, a small bond.

Hearing her cry was though when I knew if I just went and stood by her she would stand up and I would get a killer smile and a Miss America flick of the wrist wave.  Scott said no and that I had to wait it out so I listened to her cry which felt like eternity.  Ok, 15 minutes but then I had to go.  I picked her up, she laid her head on my chest, she wiggled a few times sinking into my body, took a deep breath, and fell into a deep precious limp sleep.  So deep that her drool leaked through my shirt, tank top, and down to my bra.  

I will spare you the picture of the drool spots but I totally thought about taking it!

Anyhow, after she fell asleep, I held her there for a while, reflecting on our day and all that we had accomplished physically and emotionally.   People said I would get there in my own time.  

Baby steps.

I pray there is hope that our future will someday return to normal and that our relationships with our families can go back to how it used to be, that the accomplishments of our nieces and nephews someday won’t sting so bad, that our friendships rekindle as they once were, our finances can adjust to its new cash demands, that we rediscover our lost hobbies, and lastly, I pray that Scott and I together can find peace in all of this.   

Happy Father’s Day to the greatest husband and daddy ever.  

(Also) Happy Father’s Day to the man who steered me straight and taught me how to pick em.

Here are a few photos of Maddox giving daddy his gift which by the way was a new smoker grill.

One more thing.  Remember how I told you that Scott would do just about anything to make his wife happy?  I figure I better share this while he is still forgiving and marveling over this wonderful post dedicated to him. 

****VIDEO HERE****

There is no stopping us.  

Maddox WILL conquer this world!

We recently changed health insurances (not by choice) and Maddox is scheduled to receive half the therapy next year that she received this year.  Big bummer.  If we want to pay out of pocket for the other half, we are looking a 30,000 of unanticipated costs.  That is 90,000 over the next three years.  I can’t help but think about the new addition we could have put on our house, the vacations we could have taken, the pool times three we could have installed, the new SUV (and gas) that would have bought us.  To be honest it is taking me a while to give up my materialistic lifestyle dreams and face the reality of the life I never planned for.  

But.....I’ll get there.

Anyhow, with that depressing insurance information I tried to be proactive and spent hours talking to various representatives.  I spoke with social workers at the hospital, staff from Michigan works, emailed the governor and other staff in Lansing, looked into grant funding, reapplied for state assistance, worked with the staff at the Health Department, Social Security, Early Head Start, and two Insurance Companies trying to find Maddox an individualized health care plan that will meet her needs and allow us to invest that 90,000.

Seriously, I am going to vent on whoever created these insurance plans.  They wrote them specifically for adults.  Yes, 30 outpatient visits a year would rehabilitate a shoulder but 30 visits a year does not help a child learn the most important skills in their entire life like walking and talking.  

Can you believe every single person I contacted led me to a dead end.  

Every single one of them.  

Those that know me, know that dead ends are not options.  

If I arrive at one, I start chopping trees and making way for a new route because I don’t accept no for an answer.  

I think this is the second time in my life that no has to be and being ok with it is like trying to pull healthy teeth.  I just can’t do it.

I was talking to my dad the other day about how we were not going to be able to afford to get Maddox all the therapy she had been getting and that she needs.  He made a comment that this situation is really tough, and he had been through it once before when trying to get the best hearing care for me.   

(Sorry dad, I have to quote you, it is all part of the how the story came to be - and you should know better than anyone else that a stop sign means....I go).

He said, “Don’t you think we wanted to get you the very best audiologist when you were growing up?  We did what we could, what was within our means.”  

Meanwhile as he was telling me this, I was doing my famous I hear ya but I’m blocking you out trick.  I kept pondering and pondering what he was saying.  Nope, not gonna fly here.  Nothing is outside of our means, I am bound and determined to get input from the best of the best.

In which case I have good news to share with you!!


THE BEST IS YET TO COME.

I found out in March that we have been accepted to the Trisomy 21 developmental assessment clinic in Philadelphia, Pennsylvania.  This means that in August we will be evaluated by a team that specifically deals with Down Syndrome kids.  Thousands of cases to refer to = research based practice.  Amazing connections, I can’t wait!  I have my list of typed questions already started!  

In addition to the clinic, I also received a personal emailed today from a nationally known Speech Therapist named Sara Rosenfeld-Johnson.  She is famous for her oral motor placement therapy techniques in which Kim (the speech therapist) has already implemented with Maddox AND we have seen results.  I specifically asked to be evaluated by Sara, not one of her trained staff, and she responded with a warm welcome.  Her summer will be spent near Rhode Island.  My summer will be spent figuring out how to get to Rhode Island!!

East coast here we come!

MELISSA WEST
I am so glad to hear that you are getting some help.  Have you checked into "Crippled Childrens" Insurance.  I believe it is "called special health care services" now.  We used them for many years when Cory was little and they paid for EVERYTHING.  We applied thorugh our local Health Dept.  If oyu have not I owuld do some checking into it.  There is NO reason she wouldnt qualify.
THURSDAY, JULY 7, 2011 - 08:56 AM

Soar baby soar, you own this life.

This post is raw and real, it has been my intention since the very beginning to share truthful events about this journey.  This experience is something I didn’t anticipate and am willing to share with other parents.

Before Maddox, I had a huge pot a great friends.  Nobody was better than any one else, I was exactly the same person (my happy self) around each one of them, and we were all a great big functional family.  

It’s amazing what a life changing event can do to change this pot.  

What was once a single large warm pot hanging over a campfire is now three separate old tin pots on a dirty stove.  One pot is cooling down, one is simmering, and one that is heating up.

COOLING: There is a group of people that was around before Maddox.  This group made many promises to my family when Maddox was born.  They would be here for us every step of the way, love us, lift us, and help us to get through this no matter what.  Unfortunately, this group is cooling down.  I believed the promises, relied on these people, but sadly I hardly hear from them.

SIMMERING: The second group of people are those that, again, we knew well before Maddox was born and they are hanging on.  I feel really bad for this group..... I will explain more in a minute as the rest of my post focuses on this.

HEATING: The third group consists of those that have chosen to love and support us as the changed people we have become.  They watch us during our daily struggles and have decided on their own that we are still the kind of people they want to be friends with.  I am extremely thankful for this rising group.

Back to the core of this post, the simmering group that knew me before Maddox was born and the same group that continues to hang on to our friendship despite the difficulty.  My heart hurts for these people because they have a very tough job (dealing with me) consisting of listening, trying to say the right thing, staying positive, and so on.  

I used to be a free spirited, carefree, spontaneous, fun person.  This group is patiently waiting.  Waiting for the old me to come bursting through the doors.  

It really hit me the other day when I ran into three friends all within a few hours of each other.  Our relationships and conversations used to focus on making summer plans, taking spontaneous road trips, planning beach parties and play dates, laughing hysterically, playing pranks, and simply living life without regrets.   Those were the days.  I miss them too.

Unfortunately, reality is that my carefree spontaneous life is long gone.  

My conversation with the three of them the other day no longer consisted of flowers and rainbows, but went more like this, “Yes, we are still fighting with the insurance company, no she is not walking yet, therapy is getting cut, only 3 specialist left to see this year, no we can’t go on vacation with you because of the bills, we didn’t ask for this situation, no work is not helping me out, nope we are not eligible for that program either, and so on.”

It jabs my heart knowing that if things had turned out different with Maddox, I would be a much different person today.  A much happier free spirited person.  My worries would be different, my conversations would be different, my attitude would be different, and even my health would be different.  I would still have that single pot of friends hanging over a friendly campfire.

Anyhow, that night I had such a negative day I came home and told Scott if I had a friend that always spoke of the negative things in her life I would probably be turned off.  Ugh.....I am that person.  Who wants to be around me?  

This puts me in a terrible situation because these friends are my counselors, the ones I confide in.  I owe everything to them because it is this group that selfishly sits and listen to me complain about all the issues I am facing (I know I would never be as patient as them).  

Everyday I contemplate, do I continue to confide in these friends until they are sick of me or do I simply hide my emotions and fake it till I make it trying to preserve our friendship?  

I don’t know what the answer is?

I do know, my old spirit is gone.  It may never return.  I don’t have control of this.  My core inner being was destroyed in more ways than anyone can begin to imagine.  The good news is that in the meantime, life is unconsciously creating a new spirit for me and someday (sooner than later I hope), it radiates within my body and I can become half the person I once was.  

Dearest friends, I am anxiously awaiting the arrival of my new spirit and believe me when I say that I want it just as bad as you do!  I want to be healthy and happy again.

Thank you simmer-ers for being loyal, staying with me through thick and thin.  Your dedicated friendship means the world to me.  

In the meantime I am going to work on finding a way to store my negativity in the broiler!

MELISSA WEST
if your friends love you and care about you they will be there no matter how much you complain cuz that's what friends do.  Just try to remember that with every complaint try to also put something positive in there ie.  "Maddox woke up with the biggest smile today", "Maddox has her first tooth", "Maddox is crawling and getting into EVERYTHING".  Altough there is a lot of things to worry about and be concerned about you need to remember that you would still have worries and concerns if Maddox was "normal".  Your priorities change when you become a parent rather to a "normal" child or a child with special needs.  We have not taken vacations in years and it's only because our priorities have changed NOT because we have a child with special needs.  Keep venting to your friends if need be because that's what TRUE friends are for.  The ones that arent there anymore don't know what they are missing watching this beautiful baby grow.
THURSDAY, JULY 7, 2011 - 08:49 AM


MICHELLE HAUSER
I was so moved by your YouTube video on Friday that I checked out your website today and wanted to read your blog.  This post captures a kind of universality in the experience of becoming a mother and moving into the next stage of one's life-which is alll the more intense for you because of the intense experience of raising a child whose needs are exceptional.  But many of us have experienced this; a falling away of some relationships and friendships, a deepening of others and...much, much, confusion about the relationships that simmer.  It can be very painful to live in close relationships with people who long for the "old you" - and if your spouse is not one of those people you can thank God for that, let me tell you.





The new you will emerge and you will love her more than you think you can right now.  Based on my experience, she can be nudged out of her cocoon into full butterfly mode by living very intentionally into the relationships that have "heated up".  I'm not suggesting that you walk away from your "simmer-ers", it's just that hanging on often takes more out of you and delays your progress than the moving on - and living into the relationships with people whose doors are wide open, who help you recharge, who nurture you and fill you up.  





You are a very strong woman and an incredible blessing to little Maddox.  I wept when I watched your video out of a sense of incredible joy that such a precious and vulnerable little soul was born into your hands.  I'd say she beat some odds on that too.


SUNDAY, JANUARY 15, 2012 - 09:08 AM