Wednesday, February 16, 2011

Digging in the Dirt

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Noah had his second to last sensory class yesterday. He did pretty well for the most part, except that sensory gag reflex was in full force. He just gags when he's overwhelmed. And the class just keeps getting bigger and bigger. I couldn't detect much wrong with additional one that came yesterday. She was speaking multiple languages, running around and looked absolutely perfect at age two. A far cry from my little Noah that can't sit independently and can't utter a word. The daddy that brought this little girl seemed to be almost flaunting how wonderful his little gifted prodigy was. I'm not sure if the other parents felt it or not, but I did. I don't think he even took the time to really look around to see what the rest of us were facing. He had his blinders on. But you can't open everyone's eyes. Not everyone is going to care about your difficult plight. Not everyone is going to see Noah as a "person." I do really wish though that all these parents that are so desperate for their children to read at nine months old and walk by six months, would realize that your child doesn't have to be the best and the brightest. Can't you just let them be what they're to be without placing this gifted and talented perfection syndrome on them? I can't imagine that is really a turn on even for parents with other typically developing children. My little Susie is brighter and better than your Johnny? What is that teaching our kids?

Noah and I are looking forward to pool therapy this week, we hear the pool got a tune up and is extra warm this week. The warmer it is the better Noah does. I have spring fever, and am anxious to plant Noah a special garden that I have all planned out in my head. I ordered him some organic seeds from a local nursery that were really reasonable, and hope to add them to the Vitamix to make him some yummy homegrown food during the summer months. It's really funny that it took me until my middle twenties to realize that Jello was not FDA approved and made from crushed bones, and until my early thirties before realizing that non-organic seeds were treated with formaldehyde, fungicides and disinfectants. All the things they just don't tell you...

I really wish I had a bigger yard, I have the planting bug in a big way all of a sudden, I want to grow apple trees, a weeping peach... the list is really endless. But there really isn't room for all these plants in our tiny yard. So a little garden for Noah will have to work. I already have a little garden with miscellaneous things that I call the "Victory Garden", maybe I'll call Noah's companion garden the "Miracle Garden." It sounds rather sweet, and completely Noah. Hopefully Chris will help me with this project that I have stewing in my thoughts on a warm March weekend. He thinks I was kidding when I mentioned it the other night, but little does he know I'm quite serious about this little garden! Noah can help and get his hands all dirty, play in it with his feet. It will be all his. Better than a sandbox that he can't play in I think. We'll watch things grow slowly together. Maybe I can even help him pull his very first carrot out of the ground.

"You can bury a lot of troubles digging in the dirt."
~Author Unknown


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, February 14, 2011

Happy Valentine's Day

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"Above all else guard your Heart, for it affects everything you do."


Sometimes it feels like my heart is all that is left of me. A simple shell of a person that has only a beating heart, that cares beyond all measure. Valentine's Day in the world of special neeeds takes on quite a different meaning. I'm sure it was intended to always be a lover's holiday. Even the sweet lady at the grocery store the other day was joking she calls it "Singles remeberance day." And declared she was going to blast Beyonce's, All you Single Ladies song all day long. We all attach our own meaning on it. But regardless it surrounds the thought of love.

I baked Valentine's Day cookies yesterday, it was the first time I ached for Noah's participation in the kitchen. He should be at the age now begging me a for a cookie, clinging to my leg asking if he can help me. These cute little cheap ready-to-bake cookie hearts with be-mine messages. He lacks the ability to even nibble on one. Yet I baked them anyway. Why? I don't know. To feel "normal" maybe. Because that's what other moms are doing. Baking goodies for their children to take to class, helping them fill out cute little Valentine's for classmates. Life can have such bittersweet moments.

My heart is so full of happiness that Noah is still here with us. Against all odds he is here. He is the ultimate Valentine. He is better than any box of chocolates, any Hallmark card, or fifty dozen long-stemmed fire and ice roses. By: Terri Mauro

Sunday, February 13, 2011

You are Strong

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"How often has it happened -- an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you shake your head modestly, and brush it off, and maybe even feel a little condescended to. But you know what? They're right. You're strong. You're facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be so strong. But appreciate that strength now. It makes you special. Capable. A force to be reckoned with."

By: Terri Mauro
Love Notes for Special Parents

They say time heals all wounds. I don't believe it. It doesn't. Who ever came up with that expression ought to be slapped for giving a false sense that all things heal. Chris and I will never be the same that we were two years ago, my family will never recover, my child will always be physically impaired. Everyone says you find a "new normal" I don't want a "new normal." I want it how it should have been, until everything was yanked from under us. How many parents have to run to therapy almost daily? Not many. How many parents have to worry about germs and carry lysol rags everywhere they go as if they have verminophobia only to protect their child from an illness that could compromise his safety and health? How many parents have to worry if they'll get two more days or twenty more years with this precious soul that has all these special needs? We have no choice but to be strong, there is no other alternative. We cannot and will not ever give up. Faith, love and hope always.

Tuesday, February 8, 2011

Modification Attempts

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Homemade attempts at a bath chair

The quest is still on to find ways that Noah will learn to love a bath without his toddler tub. The manatee just isn't working no matter what I do or how I force it on him. Then Chris and I spend gobs of time trying to calm him down after his bath in order to even try to go to sleep. I dismantled one of his highchairs that we tote to various places and sit him in occasionally in the family room. I stripped it off all the metal, the padding and reclined it. I thought I had found the perfect fix. But Noah was still unsure of it and it slid all over the bottom of the tub floor because it doesn't have suction cups. So Chris rushed to Target and got a bath mat, and we're hoping that helps the cause. I really would love him to enjoy a bath like other kids, to be able to play with toys or push them around or even swat at them with his feet or hands.

I also purchased him a toddler indoor swing from I thought it would work. It has a five point harness, however the straps cut into the sides of Noah's neck because they aren't soft, and he still wants to lean forward and sideways. Chris says we should keep it, that Noah will eventually learn, and in my mind I'm still trying to find ways to modify it so it will work. I hate feeling like I keep failing at equipment for him. On the brightside however, a Convaid representative has been diligently attempting contact with the equipment vendor we've been going through. It sounds like if I'm patient that a cuddlebug trial may be in our future. So far he's been unable to make contact with them, but I'm still hopeful they'll make a connection soon and that we can try something that has the potential of working for Noah.

The weather has us cooped in again this week. No sensory class today, and no pool therapy last week. And his therapist got stuck on the way to the house today, so no therapy today either. At least we had a miniature break in the weather for one day and were able to get together to celebrate my birthday with my mom and Chris. We had to sing happy birthday three times because it gave Noah the giggles. Maybe someday he'll be trying to sing along. He certainly loves birthdays. It's a combination I think of the candles and the singing that he seems to enjoy. Noah also loved the fleece pajama pants that his daddy gifted me with. We placed them on his lap on his highchair and he clung to them looking down to pet them occasionally. I think he liked the fuzzy feeling of them. It was cute. Anything that will trigger a positive sensory response in him is truly wonderful.

Chris and I have also decided that it's time to redecorate Noah's room a bit. He's no longer a baby. Even though his skills may very much make him look like an infant, he's simply a toddler. And a change of scenery might be nice for him. Noah has latched on recently to Blues Clues, and seems to have put Elmo on the back burner. Blues Clues is a little harder to find because it's no longer being made, but I was able to find some cheap stickers to throw up on his walls and some curtains that were on clearance at Target. Noah won't mind that it won't be fancy and elaborate. It's just time to put away the baby decor. We hope to make that our spring project, Chris and I are slow to get things accomplished these days. There never seems to be enough time to do all we need to. We want to make sure the room stays simple. We aren't going to paint the walls a color or do anything loud, as I think it would be overwhelming for Noah sensory wise, not to mention financially something we can't do. He can't focus on things that are overly busy. He needs simple. And everyone needs a "zen-like" place to sleep. Noah has also outgrown his baby changing table. I researched pedatric changing tables, and without surprise they are in the thousands! I found a really nice one by Sammons Preston with drawers, and doesn't look like a doctor's table that you attach to your wall. And I bet a million dollars that Medicaid won't go near it. I don't even know if I could score that on appeal if special needs children can't get beds approved how on earth would I even think I could get a pedatric changing table approved? And the list of things that Noah needs just keeps growing...

"Sleep is an Art" (That Noah has not learned).


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sunday, February 6, 2011

The Year of the Rabbit

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February 3, 2011 marked the start of the year of the Rabbit on the Chinese calendar. A year that is believed to bring quiet, positive and inspiring things. I survived the year of the Tiger, and is certainly had it ups and downs; a car accident, social security modifications, medical bills, you name it there was something falling to pieces at least three or four times a month last year. I love fresh starts. Even if we convince ourselves that they are such. It opens your intentions and subconscious to possibilities. Doors open that you may have not realized were there, you have renewed perspective faith and hope. A new found energy comes over you. And suddenly you say to the world I can do this, tomorrow might be different, but today - today you can do this! And then you cross your fingers and your toes that all that positive energy that you can gather will somehow filter to the sweet little one in my life - Noah. That he will feel all things are too possible for him.

I've spent some time reading new blogs this week, new amazing challenges, families facing what seems to be the impossible. The fight between life and death for a child that is a reality for many of us. You question sometimes is it better to put it all out there, to expose yourself in your most hurt, dark and painful moments. How will our words be taken? Will they be digested and dissected into a million pieces? Will we find words and comments of comfort or face heavy criticisms? Will our words be twisted and used against us? Are we better off remaining silent? Are we even helping the world at all by sharing our lives, exposed and raw? We network with other parents, talk to others that have children similar in special needs and conditions. We hope to give hope and inspiration to those sitting on the sidelines, serving as example that you too can rise above some really difficult times, to demonstrate there is such beauty underneath a child that cannot speak, or walk, or sit. At the same time we do crave and need a certain amount of support to get through the day. And some days we're a bit easier to knock down than maybe the next person. But we continue to get up and dust ourselves off regardless and move on because we know in the end we're advocating for the most precious things in our lives.

I stumbled on this poem titled a Litany for Survival in touring a blog. I've read it four times now, including this post. Thought about it, considered it, and it spoke to me in a different way each time. Like this layered message. I am one that can no longer indulge in the passing of dreams of choice. It took only one life altering event, and I feel robbed of them. Like they were stolen without warning. My dreams are no longer my own, they exist only for Noah. I do reside and live with fears. Many of them. Fears for the future, fears for safety and quality of Noah's life, fears that the world will be unkind to him or us as a family, fears that someone will stumble across my blog and dissect into a million pieces when it's intent was just merely to offer support to others, describe what our life is now like, and share with the world this beautiful blue-eyed little boy that survived against the odds. But as the poem suggests:

"and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
we were never meant to survive"

It is better to speak, and not be silent. As special needs parent, I don't want to close that door. I want everyone to know what this is like, I want to share Noah's story, for better or for worse, I want to offer hope, or let you share in our sadness or joy. There are so many beautiful blogs out there filled with inspiration, hope, love and faith. And most importantly God. Regardless of the scrutiny the medium of a blog offers, the fears that somehow your words will be taken sideways or backwards, or misunderstood. I commend all that are brave enough to do it. That put themselves out there to suffer any potential scrutiny. We make ourselves vulnerable and find ways of such expression that only we can bring in sharing special needs with others in the community. We should not be silent, for most of us we are our children's only voices. Their journeys deserve to be told. Our lives shouldn't be hidden in the closet like a disease trying to be contained. God would indeed want us to share our special children with whomever came across our blogs. There could be someone out there needing a message in something they read in a blog. Whether that be advice, help, support, or information on equipment or therapies. That is what it should be all about. Don't be afraid to write, don't remain silent, our children are counting us to be that voice.

For those of us who live at the shoreline
standing upon the constant edges of decision
crucial and alone
for those of us who cannot indulge
the passing dreams of choice
who love in doorways coming and going
in the hours between dawns
looking inward and outward
at once before and after
seeking a now that can breed
like bread in our children's mouths
so their dreams will not reflect
the death of ours:
For those of us
who were imprinted with fear
like a faint line in the center of our foreheads
learning to be afraid with our mother's milk
for by this weapon
this illusion of some safety to be found
the heavy-footed hoped to silence us
For all of us
this instant and this triumph
We were never meant to survive.
And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full we are afraid
of indigestion
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
we were never meant to survive
- Audre Lorde, The Black Unicorn

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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wednesday, February 2, 2011

Love & Understanding

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While I was waiting for Noah's battery to rundown the other night I watched an episode of Parenthood on television. This particular episode had a storyline of a grandfather wanting to take his grandson who has Asperger's Syndrome camping. His parents, with obvious apprehensions allowed it, outlining a written guideline for a reference on how to handle situations with their son. The grandfather denied needing any kind of help. He had it covered. After all it was his grandson, how complicated could he really be?

I seen qualities that were so very familiar in that dynamic. The grandfather wasn't doubting that his grandson had such a diagnosis, but I don't believe he truly had a firm understanding of how difficult just one entire day was with a challenged child. He winds up calling the parents for help and advice after an apparent meltdown from his grandson, and after the parents had spoken to him on the phone magic words to calm and soothe his world, all was fine and they were able to finish their camping adventure. They both returned home to anxiously awaiting parents to hear how the trip went.

The grandfather admitted he really had no idea what they must experience as parents, but said his grandson was a great boy. You could tell this character had a new profound understanding of his special needs grandson. I hear a lot of special needs family with the same complications. It's a hard road to really understand unless you're personally living it and it affects your daily life in some way. You can be a family member - even a close one at that and unless you help daily, or often you may not fully realize what a day in a life for special needs really means.

You may hear your son, daughter, sister or brother, or best friend discuss what it's like to have a special needs child, you may sympathize and try to relate, but until you've had it land in your lap all alone - just you and that special needs child one on one, you can't truly ever know how hard it really is. Does this mean that every grandparent needs to go off on a trip with a special needs child? No. You have your own backyard to get to know them. Same is true with friendships that often become substitutes with family breakdowns. Spend time, not even necessarily alone. But take the time to see it, just not hear about it. Watch it with your eyes, so your heart has a greater understanding. We can speak a thousand words, try to describe it to the moon and back. But bear witness to it, just for a moment. Appreciate our experience, know that we're doing the best we can with circumstances that are often beyond our control. Give us that room and freedom that we need to cry, find our joy, celebrate inch-stones, and cry some more. Most importantly don't pass judgment.

A lesson that my mother reminds me of all the time. We came out of Target the other day and a young kid, who to me looked beyond irresponsible, probably lacking a job, potentially drug addicted, scruffy, and without manners to say please and thank you, pulled up in a white handicapped licensed car, which clearly wasn't his, asking for two dollars because he was hungry. I hesitated thinking there is nothing wrong with him and I didn't believe he was hungry and need two dollars. Yet my mother passing zero judgment, gladly hands over the last two dollar bills she has in her purse. And after he drives off she turns to me and says we must give him the benefit of the doubt and pray for him. I guess God couldn't have sent a better teacher for me to lead me by example. She was right as much as I could sit there and study this kid, it wasn't my place to judge, I wasn't in his shoes and maybe just maybe he was telling the truth and was indeed hungry. Who am I to judge? We've all got our personal struggles on this earth. With understanding comes profound love and acceptance.


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Cooped Up & Cold

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We are still missing sleep. You'd think Chris and I would get used to it. But we truly suffer when Noah's bedtime is 2am and he gets up at 6am. I'm not sure which is worse late nights, or being up every one to two hours. The other night we had an added bonus, his loudest toy in the master bedroom decided to go off because the batteries are trying to die. Nothing like being woke up to a toy cackling at you and lighting up your room like a UFO just landed on the carpet. And of course our little light sleeper heard every second of it and was up immediately. Darn.

Noah has been doing really well in pool therapy, we put a life jacket with a hood on him for the first time. He tolerated it really well, and we were able to give him some more freedom with his vestibular motion in the water. We made the formal decision to take a break from sensory class for a while. We've had discussions about addiing additional types of therapies in its place, but we're just trying to make sure we don't overload Noah. We know that he lacks the speech component to his therapy week. We've been trying to do as much in-home speech as we can, yet to no avail. Noah still has no words. We've had recommendations to enroll Noah in hippotherapy in the fall, something we can't afford either. I'm so frustrated that Medicaid won't help us pay for these things. It's not like they are experimental, they do work. I also was reading up on the benefits of acupunture for the compromised brain, and the help it can often give the nervous system, and we can't try that either. I know there is no cure for brain damage. I'm not looking to "fix" Noah. I know I can't do that. God how I want to. But it's compeletly out of my hands. All I can do is attempt to find ways to improve his life. And it's frustrating not to have access to things that we truly believe would offer Noah the hope of making physical gains.

It's been extremely cold here the last couple of days. I'm thankful that our snow was minimal as I know many other states haven't been that lucky. Due to the temperatures Noah's sensory class was cancelled, and I'm not sure if pool will be possible or not this week. The pool often suffers with temperature problems when it gets really cold outside, even though it's an indoor pool it still has an impact on keep the temperatures as high as usual for him. It's just as well that Noah stays inside, the cold can't be good for breathing, and I'm sure these temperatures will sprout a whole new chain of illnesses that we'll have to watch for. We keep Noah still heavily guarded from germs. We just aren't risking the onset of seizures if we don't have to. We remain so very thankful to family, friends and therapists that warn us when they aren't well so we can keep Noah healthy.

A representative from Noah's equipment vendor has agreed to pick up the Twist pediatric chair that is in my basement non-functional for Noah in the next few weeks. Even if it is modified I know that it's not the right chair for him. I really want to trial the Convaid Cuddlebug, yet I'm told that there is no way to do that in this state since there isn't a vendor that carries them. So as any persistent mom, I contacted Convaid via email to see if I had any other options to trial their product to see if it is a good match for Noah. Maybe I'll hear back, maybe I won't. But I won't give up on finding the right equipment match for him. There is a reason there are so many products out there because it isn't a one size fits all for special needs bodies. And I'm determined, to find the perfect equipment match for him. He deserves to be comfortable.

Hopefully Noah will want to snuggle for a while today and nap. Another cold day today, which means we'll be cooped up inside again, for the third day in a row. The highlights to our day are washing rugs and scrubbing the kitchen floor since the dogs think it's too cold to take even 30 seconds to piddle outside. I don't blame them really, below zero temperatures I wouldn't want to potty outside either. And Noah seems to like some of their cooped up energy as they bounce around stealing clean socks from my laundry basket and playing tug of war. I think I even seen him smile in one of their directions yesterday and usually he avoids looking or paying the dogs any attention unless he has to. Waiting patiently for spring.


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.