WALKING!!

Who is walking??!!

Yummie is!!!

Friday, when Jay and I got back in town the most amazing thing happened. Wiggles walked like ten feet and remained standing! No dive at the end this time! He stopped! All by himself! We were SO happy. Words cannot even describe how great we felt. And every day since, Yums has continued to walk further and further. He still prefers to crawl of course but he actually substituting crawling for walking a lot! He can walk with a cup in his hand even while he is drinking from it! AMAZING!

Wiggles is also signing!

He can sign More, Milk, Eat, Please, and he is learning more every day at school! We are really proud of him.

He had two shots and the 'flu mist' today and he was extremely mad at everyone. He remained upset for the rest of the evening but a small price to pay for health. Tomorrow we go for his blood draw for Sotos. Finally, we get the one test that we have needed now for three months. Next week, it is on to Dr. Kendall, our other geneticist. And two weeks later to the Neurologist.

His Pediatrician is going to diagnose him with as many diagnoses as she possibly can so that we can try to get him on Medicaid before our appt at Marcus in November. Otherwise, we are going to be eating Ramen Noodles and Dairy Queen for a VERY long time. Wait, we already do that. I guess we are going to be looking at second jobs if this insurance doesn't come through :(

I applied again for Medicaid two weeks ago, and we haven't heard back from them yet. The last time that they denied us, we heard back from them almost immediately, so maybe this is a good sign...

I don't know what i would do without all the support from husband, my family and my best friends in the whole world! I love all of you so much!

Lemons

Outrage.

That's the only way I know how to put it.
I am 100% completely outraged.
There are only a few qualities in people that have the ability to frustrate me to this point.
Liars, Cheaters, and Human Beings with a total disregard for anyone other than themselves. (We will call them selfish pricks.)
They will hurt anyone and everyone in their way to self-gratification.
Whether or not that person is friend or foe or even family. They are non-discriminatory. It doesn't matter to them who they hurt as long as it is not them that suffers.
It is them and their enablers that really do me in.
Enablers are incapable of justice. They are only supporting a lost cause, contributing to the inevitable downfall of their charges.
Is it Love?
Is it stubbornness?
Mercy?
Or blind faith in a perpetually evil being that causes them to ensue this devastating course of action?
I do not know. But I do care. I want to know WHY!!??
Why can moral and decent people with strong values and principles be cast aside by the same people that choose to devote their support to those unworthy of it?
After a time does this not become predictable?
Do they not grow tired of this twisted game?
Are the enablers themselves weak?
So many questions...


And yes, I need to know. I need to know so that I can accept what I cannot understand. Without acceptance, my mind rages with an inner war.

First and foremost, I have this great desire to "help" people. Unfortunately, I have yet to meet anyone with these qualities that wants to be "saved". In the past, the only thing this has brought me has been inconceivable amounts of pain. So now, normally, I would choose to "escape" these tragedies of life by avoidance. I would simply, not allow myself to be associated with them. I would avoid them, pray for them, and leave well enough alone.


But what about when certain circumstances or relationships bring these people to you for good? What if avoidance and ignorance are no longer available options? How can you live with them everyday in your life but not be affected by them? Can you? How do you prevent them from dragging you down with them or at the very least, stop the ever increasing aftershocks they leave in their wake? It seems that everyone they come into contact with is a little more empty, a little less happy than before. How can you be so relatively close to them but not harbour hostility? What about the enablers' themselves? Can you not hold them accountable for their actions either? Do you simply dismiss them as well? How long can that go on before pandemonium strikes? How long before it has affected you in such a way that you are changed? Bitter? Resentful? Is there anyway to not let this happen? They sure as hell don't deserve the credit you are giving them by letting them "get" to you but how do you write them off?


I am usually a lemonade maker...
But today, it is pouring lemons.

Yummie's 1st Day of Preschool

What a wonderful first day of school!

William has two GREAT teachers, and I am so happy they love him already! Jay and I dropped him off at 9:00am and picked him back up at 12:00pm. It was definitely the longest three hours of my life. Apparently, Mommy was the one with the attachment issues. He did GREAT!

There are three other children is his class right now, so he gets extra special attention from them. Hopefully this is really going to help him progress.

Let's all pray that he continues to do well and enjoy school this much all year long!

DR. Mommy

Where do we go from here?

Pediatrician = check

Neurosurgeon = check

Pediatric Optometrist = check

Geneticist = check

Ear, Nose and Throat doctor = check

Ultrasound = normal

Audiology = normal

Blood work tests = normal

CT Scan = normal

MRI = normal

Vision Screening = normal

So, I put in a call to our Pediatrician who obviously, is supposed to be in control of this three ring circus that we call our lives now. What does she say to do? "Oh, it sounds like you are doing a great job Ashlee, just keep doing whatever it is that you are doing." WHAT?! Excuse me, but ARE YOU SERIOUS?!!! Just keep doing whatever it is that I am doing?! I am confused. Do I have a medical degree that I was unaware I possessed? I think not. I have no idea what I am doing here. As if it wasn't bad enough taking on the responsibility of getting him to all these doctors and taking him to all these testings and then dealing with all the results that they wield, now I have assumed the responsibility of being his advocate and doctor?! WTF??? Who does that leave me to blame if his "condition" isn't properly assessed? Who can I depend on to do everything humanly possible to help my son? Myself? This is not fair. To put a mother through everything that I have been through so far and then to give her the added responsibility that if she doesn't adequately diagnose her son then that is "her problem" because she wasn't good enough, didn't try hard enough, didn't know enough to do a good job?!

As if the weight of the world wasn't already on my shoulders.

Now if I "F up" what will happen to my son? My Amazing Little Wiggles?

What will become of him because I was judged and found lacking?

I think I need a new Pediatrician.

And I can only guess that that will mean NEW testing, NEW theories, and NEW specialists. What am I doing?

I just wanted someone to help Yummie. To help him be "normal" in every sense of the word. To help support us, his family, when we feel like we have failed him. To keep us looking up but also to prepare us for the times that we have no choice but to look further down.

Their job descriptions must have changed in the past few years. Or maybe I had an idealistic picture in my mind of what a doctor was supposed to be like.

Stumbling into all of this head-on was hard enough, now I have no one else to blame for any shortcomings besides myself. It seems that his doctors want no part of it on their shoulders. Is something wrong with him? They are quick to point out YES. Do they know what "it" is? No. "Just keep looking", they say. Thanks, I appreciate the clear cut advise.

To my Mother...

I wish that I could explain how it feels to know, without a doubt, that I have the utmost AMAZING Mother in the world.

When I stumble on life's journeys,
she will always lend a hand.
If I feel I can't go on,
she says, "You will, you can."

I have so much to thank her for,
she truly makes me whole.
I could not love her less,
than with my very soul.

God knows, I 've tried her patience,
almost each and every day.
Yet, still she smiles and hugs me,
like she knows no other way.

I searched everywhere I could for love,
when no love could be found.
Not knowing all I had to do,
was just turn-around.

There is no better example,
of how the 'perfect mom' should be.
A Mother...Best Friend...Angel,
She is all of those to me.

My only real aspiration, Mom,
is to be more and more like you.
To be self-less in a self-ish world,
Always honest, always true.

I thank God you are my Mother,
every day and every night.
And in this world of darkness,
it is You, who are my light.


Thank you for not only being my mother, but for going above and beyond so many times for me. I promise to be worth it someday.
HAPPY BIRTHDAY!
I love you,
Ashlee

Preschool for Mommy

I am seriously going to try to be better at this...

Last week, I had to enroll Yummie in preschool. Not the highlite of my summer for sure. After calling around to a few different churches offering the program for his age, I came to the realization that not everyone wants to help him. I knew this indirectly of course but to really hear it from these people was hurtful. I heard about just how "unprepared" they were to handle a "special" little boy for six hours a week. How they could not be expected to "just carry him around" all day. How helping him eat his snacks would severely inconvience them. Nice to know that if we couldn't find anyone else to take him that at least one of those places would take pity on us and try it for a week with no commitment or promises.
Just when we were losing all hope, we found a therapist willing to help us. Ironically enough, that same therapist happens to be my best friend's son's therapist. She gave me the name and number to Essential Therapy, a therapy center here in town. I called, then spoke with Val. I gave her a rundown of what was going on with Yummie and what I had been through trying to find him a preschool that would take him. She said she didn't know if they could take him either since he couldn't walk but that if I could hold for a moment she would find out. Of course I said, "Sure, no problem" when what I was thinking was, "Great, just one more letdown in a long line of them."
She came back after a minute saying that YES, they would be HAPPY to take him! I was completely elated until she asked if he had any other "special needs" they needed to be made aware of. "Yes", I said, "He cannot feed himself anything." Her reply was, "Oh... well, hold on again and let me see if we can still take him." (Self-pity returning) I thought spec-freakin-tacular! We FINALLY found someone to take him even though he can't walk but because he can't eat a goldfish we're SOL. Fabulous. (More self- pity observed here) She once again came back on the line. "I just talked to the owner and she said that, Yes, we CAN take him." I cried. Lame, but I did. I couldn't help it.
She emails me the paperwork, which of course I have filled out and ready to take over there within 10 minuted of receiving it.

After leaving work, I drove over thre to return the paperwork. I find out from my best friend that this is where her son actually goes to have occupational therapy and that it is a wonderful center. Good. I am feeling better about the way things are finally looking up. I meet Ms. Tina there,, and she actually takes me on a tour of the place before she accepts my paperwork enrolling him. (like I had much of a choice but this made me feel like I did) AMAZING facility! There were therapists there and therapy toys too! (I have never seen so many in real life in one place) (no lie) After seeing and hearing everything I wanted to, Yummie now has a preschool!! His therapist will go there for therapy instead of to our house on Thursdays too. He will go four days a week for a three hours a day. And best of all, they will help us, help him learn to walk and feed himself. He will EVEN take his own lunch to school! (Adorable, definitely adorable)

We are really excited about this opportunity. I just wanted to let everyone know that even if your best laid plans always seem to fail, God has a plan that will prevail!

Sometimes I get so caught up in failures that I don't truly appreciate the beauty of everydays. All of these dissapointments this week ended with a much more amazing outcome then I would ever have thought possible. I guess you could say that Mommy had a little preschool learning experience of her own this week...

Normal

Today we had therapy for the first time since January.

Yeah, it has been that long. Our NEW therapist showed up on time, brought her own "tools", and get this...he got actual therapy!

I am such a forgiving person (not naturally or anything but thanks to "the voice of reason" whom I was raised by, I am now) and I tried really hard to not change therapists. But when the name of the freakin' program is Babies Can't Wait, and the baby who can't wait needs services...should he be required to wait??? I think not. And ultimately, thank God, so did the program administrators.

Our "old therapist" is no more.

Our New and Wonderful therapist's name is Mrs. Michelle and she was AMAZING!

Today was mostly for them to get to know each other, and I completely understand the purpose of that but she STILL incorporated therapy into "playtime".

I look forward to our biweekly sessions and will update accordingly.



Now,

Therapy aside.

Today, while Jay and I were out with the boys, we saw a couple other little toddler boys about Willum's age. (I did find out they were 20 and 22 months old) They were running around and really playing with toys, pulling out chairs to sit in, and taking notice of everyone around them. Smiling and laughing at them and their antics, I looked down at Willum. I had to take a moment to gather myself to keep from loosing my tears in front everyone.
Sometimes it is so hard to not be "normal".
When my child who can barely stand on his own two legs supported, is twice their heights but yet they run circles around him. It hurts to really SEE the differences between them. Because Yummie doesn't walk. Yummie doesn't stand by himself. Yummie doesn't "play" with anyone. He is like having a nine month old for two years. I remember thinking like a lot of others do and trying not to blink because I was afraid I would miss some major milestone. But now, that is all I want. To close my eyes and when I reopen them I will see him walking or talking or playing. Just like the other little boys his age.



We heard from the Genetisist today.

The last of our testing came back from the lab.

Yummie has nothing, the tests say he is "normal".

Well, now what?

Show me a normal two year old who is not walking and I will go along with that. Normal. With B and Lubee, normal has never been an option. I have pushed and pushed and pushed them to exceed normal. Accepting anything less from B than being literally, three grades ahead of his classmates was out of the question. I refused to hold Lubee back in 1st grade, when his teachers all told me that he couldn't do it. They said he was a year younger than all the other kids and that he was too challenged by moving on to the next grade. Lubee didn't want to stay in 1st grade while all his friends and his brother moved up another grade level. So instead of relenting, we really dug in. Now, I am happy to say that two years later, I asked his latest teacher about his progress. I wanted to know if she thought he would pass the first "real" grade. She was perplexed when I told her or his prognosis from a few years before. And needless to say, Lubee is now scoring above average on his placements as well.
So, just swallowing the idea of normal has been impossible...until Little Wiggles.
Now, I just pray for normal.
Do you know how long you wait to hear "Mama" or "Dada" come out of your precious ones little mouth? And then you heaart just swells with pride and love. Everything you did for twelve months or so is finally acknowledged.
We still wait to hear those words that he is no closer to speaking than he was a year ago.

I constantly wonder; what am I doing wrong?
Instead of having a daycare 'raise him' like the other two (since I was working), I have kept him myself. I wanted to spend that time with my last child since I was finally in the position to be able to. Maybe that was wrong. Maybe I should have left the child raising to the experts instead of assuming that I knew what I was doing. Because if he is "normal" than I have definitely messed up somewhere. And let me tell you how good it feels to have test after test after test come back with the same results; nothing wrong. Specialist after specialist saying, "Nope, he's fine." So then that's it. It's me. My child was normal and perfect and wonderful until he was cared for by his own mother. Now the only one to blame for his "delays" is me.

I feel like that is on the tip of everyone's tongues. Instead it comes out as: maybe he is just lazy, maybe he is just spoiled, maybe he is just stubborn. Really? Maybe it's the fact that unlike most mothers, I need an instruction manual for my child! What else could it be if we haven't found it by now???!!!!

It really hurts to feel this way.
The one comforting factor I have right now is knowing that I am not alone in this. And God gave me the best family and friends that anyone could ever have to be there for me through all of this.
Thank God that you all understand how I feel, without me trying to explain it all the time. It really helps to know that you "get it."
I love you Jay. You made such a HUGE commitment to not just me but to B and Lubee too. You didn't have to, but I am so thankful that you did!
Kel, you are one of the most AMAZING people I have ever known! Don't ever let anyone tell you that you are not worth it, because you are...and then some. Do me a favor and read 1Corinthians 13 (yeah, the whole chapter). I love you too!
And of course, Mom.
I admire you more everyday. I love you more than you will ever know. I couldn't possibly thank you enough for everything that you have done and continue to do. I will never know a more self-less person than you. You are the mother I keep trying so hard to be.

Nice try Mommy

Okay guys, we are going to try this later instead.
Yummie is screaming his head off as usual.
Lubee is singing retarded songs he just made up about why Yummie is screaming at the top of his lungs...(NOT HELPING!)
And B...yelling at both of them to do what he says and to do it yesterday.

Yes...I suggest the therapy will have to wait until another day...