Tuesday, June 28, 2011

Conjunctivitis Strikes

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Noah Day 2 of Illness (much improved photo)

Noah had a bit of a rough end to his weekend, developing bacterial/chemical conjunctivitis that came accompanied by a fever. It came on rather quickly like in a matter of hours a slightly red eye exploded into a swollen, crusty, draining eye that quickly spread to the second eye. Poor little guy isn't happy about his eye ointment treatments, and it is much improved today, although it still looks very bad.

Daddy bought him a Nemo stuffed animal fish, and Grandma got him a new Elmo DVD to make him feel better. He was rather sad and and his tone was floppy most of yesterday, an indication that he indeed was under the weather. The heat I don't think helps, as I'm trying my best to keep the house as cool as I can for him. Doctors say it most likely that Noah acquired the bug at pool therapy, since he is not able to get his hands to his eyes. I'm sure he wants to they have to bother him. I see him trying to rub the sides of his face on the floor. He's no longer contagious, which is good news for Luke who I think didn't catch it (only time will tell as I'm not really sure about the incubation period on this germ). And they say that he'll look pretty normal by Thursday, and I'm crossing my fingers and toes.

I'm also having to wash his bedding and all that he touches daily since he lays on the floor and surfaces so the germ doesn't stay there and re-infect him. Makes for lots of laundry and busy work for me on top of having to handle a special needs little one and a baby. Thank goodness that Noah's little brother is very patient.

I was able to meet a new neighbor on one of our evening walks with the boys. Chris had to keep walking, as Noah hates it if he isn't on the move, while I chatted. Her husband has MS, and she recently quit work to care for him. It was nice just to talk to someone who understands, who knows what this feels like, the fear and sadness that accompanies it all. We hugged and cried on the sidewalk together. She is such a beautiful person and I share her pain. This isn't easy being a caregiver to someone you love and knowing you are limited in the fact that you cannot cure or fix them. For a moment I didn't feel so alone on the block. Someone understood. We promised to take a walk or have coffee together sometime soon. No one should feel alone in this and it will probably be really good for the both of us.

Please say a little prayer for Noah that his battle with conjunctivitis is short lived. I miss his clear baby blues.


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

Saturday, June 18, 2011

Double Blessed Father's Day

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What Makes a Dad

God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle's flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so,

He called it ... Dad

~~Author Unknown.~~

The devotion that Chris has for Noah grows with each passing second. I watch as Noah's daddy totes his floppy body from place to place, as he tenderly lifts him out of a bath and gently puts on clothing over stiff arms and legs, his patience for a child that is restless to fall asleep, words of encouragement for a child that cannot self-feed, excitement for a little one that can only roll over, loving glances for a child that is trying so hard to move towards his father in a walker, a daddy that points out airplaines in the sky, a daddy that holds his growing body and feeds him bottles, a daddy that takes long walks and says "I love you, my little buddy."

God couldn't have blessed our two boys with a better father. Chris is the most amazing man I have ever met. His heart swells with this emense love for his family. He is Noah's biggest fan, supporter and believes all things are possible. After a long day at work, he immediately runs to his Noah and embraces him with a loving hold. Scooping him up in his arms kissing him on his forehead. Noah smiling as he is carried from room to room. Chris' love has grown this year as he welcomed his second son. Little Luke tucked in his arms, starting to babble and smile for his daddy. You can tell Chris glows with this love that he holds for them.

On Father's Day I feel so blessed to be witness to such an amazing bond and relationship that he has with these two special souls.


Monday, June 13, 2011

One Giant Step...

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Noah finally made an effort to take small steps in his gait trainer. It is still not going as great as I think it could. The seat on the Rifton goes side to side on him when he tries to walk, I really think it needs different seating for him, probably something stationary like the kidwalk offered. Darn do I feel like we made the wrong equipment choice yet again. He has the desire to try though, and is happy about making the effort. Now if only I could just make it easier for him. Of course we are having issues with shoes, but he's willing to give sandals a try, another small step, then we'll move on to regular shoes. Noah has outgrown his sure steps and therapy shoes, so we'll have to work on that soon with his Orthotist. I'm sure he could also use a new theratog suit, he just grew super fast.

We have been practicing walking out in our driveway, Noah likes the sense that he's going somewhere. Even if it's just to the sidewalk. It's curious to watch how our neighbors take to watching Noah in his walker. I would say most notice, but they try not to stare or watch, or really pay us any attention. We're kind of like out of sight out of mind, as they go about grooming their yards and parking their fancy boats. A wave or a smile might be nice. I certainly don't see a block party in our future. You would think that society would have come much further than we have with the stigma that is attached to disabled bodies.

Today Chris and I were out and needed to stop somewhere to eat and feed Noah. Of course we don't have a highchair with us that accommodates Noah, all we had was his stroller. The restaurant didn't want to let us in with the stroller. They said it was a fire hazard and against policies. I understand, I'm not trying to break the rules, but Noah can't sit in a booster seat, or any seating that restaurants offer. The manager made an exception and allowed us to dine with the stroller, it wasn't like I was lying to get the stroller in the doors, it really is the truth, Noah cannot sit unassisted. I almost wish there was a card or a letter I could carry with me that I could show someone to say Noah really has a disability and just because we don't have a "wheelchair" because he is so little doesn't mean that he doesn't have these needs.

The manager came by to ask how everything was but he couldn't look at Noah or us in the eye. I was going to thank him for letting us in with the stroller, but I detected that the "Noah situation" made him very uncomfortable, so I let him get away from us quickly without us saying a thing. We ordered the only thing on the menu Noah could eat... ice cream. But it bought us enough time to get home.

Today I actually had my head held high. I am proud of my Noah. He's doing the best he can with some really crappy circumstances. He didn't ask to be this way. It must be tremendously hard to be him, and he's trying... we're all trying to help him. So what if a restaurant manager gets the hebbie jebbies when looking at us? We're a family just like anyone else - we are just slightly different is all. But I look at Noah and just love him to pieces. How can you not just love him? He has such a sweet little soul. Those who take the time to know Noah understand that. He's more than just a body that cannot work properly.

He's been quite happy lately, a welcome change from the fitful fights of going to sleep. Now we have just the opposite. He wants to play, laugh and giggle for a long while before he's ready to say goodnight. However that's much easier on our nerves, so we let him play away as we wait patiently by him until he's ready for us to hold him to help his arms and legs settle so he can sleep.

We resumed pool therapy and it's going great. Noah hasn't forgotten the experience and has made great gains. It's small things, but giant for us, extra seconds or minutes doing something in the pool just makes us feel like he's making progress. The hippotherapy hunt isn't going well. There are no scholarships to be had. Apparently there is no money to give any out and they haven't offered scholarships in years and I'm just not sure it's possible without financial help. Therapy costs are tremendous out of pocket for us for what we are already trying to provide for him. It is discouraging not to be able to get all he needs.

"We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don't see a cripple. I haven't met anyone yet who isn't handicapped in some way. So what's the big deal? Don't hide your deformity. Wear it like a Purple Heart." - Georgiann Baldino


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

Monday, June 6, 2011

The Space In Between

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It seems as if almost everything I have for Noah isn't working these days. He looks like he's outgrown his highchairs, the double stroller we have catches his long legs because he moves them all the time and gets stuck, so it doesn't work, leaving me without a way to really stroll both children at the same time. I lack the funds to go out and purchase a side by side double stroller and I still think Luke is too small for such a thing, I have no idea what to do with Noah's seating. I found a Seat2go online that looks promising but it's so expensive and the you have to buy the headrest and abductor separately, both I think he would likely need. And then I run the risk of it getting here and it not working. I got the Tumzee, it's worthless. If you are a special needs parent considering it, don't. I'm not even sure it's comfortable for a typical growing child. Of course to return it is a restocking fee of 15 percent and I have to pay for shipping...

I'm very frustrated, that I can't seem to find something that works, it limits my ability to do things. I can't even attempt to go out with both boys anywhere really, I'm pretty homebound without help. Noah gets upset frequently and there is no way to hold him and Luke at the same time and without a double stroller of some kind it is pretty much game over.

Chris and I attempted a Home Depot run the other day with both boys realizing the double stroller we have just isn't going to cut it for Noah's muscle tone as he fights to get his legs out from underneath the foot rest. So Chris carried his limp body through the store, as people stared on. Sometimes it feels quite horrible to be this "freak show." An unkind glance is just as bad as an unkind word. You constantly feel on display. Often Chris and I feel like we really don't fit in the world on either side. We no longer fit in with society's definition of "normal" and we don't quite completely fit with the "special needs community."

Other families with special needs have these groups - mom support nights and such, they network in ways I simply can't. And if you find that you're out of favor with one then you're really out of favor with them all, even if you've never met a single one. Dads, really are entirely left out of the equation in the land of special needs, leaving it often to a female-drama filled arena. Maybe that's because many abandon their fatherly and husband duties when presented with a life-altering special needs child, I don't really know. It's a phenomenon that I ponder and recognize exists.

I must admit these past few days I've felt a combination of both sadness with a hint of bitterness. My feelings are in no way because of Noah, it's more because I cannot provide him what he needs. I can't get a functioning stroller, I can't get him a seat to eat better in, really the list is endless and it leaves me with this immense failure feeling. A mother that cannot provide. I feel stuck and often hopeless. I convince myself that if I had the access to the right equipment that Noah would be making more gains. I've tried foundations without success, I can't even afford these recycling equipment groups, like differentneedz.com. They say you get a discount, but even $500 is out of reach for an item that is originally priced at $800. I've tried to contact groups like Kids Mobility without any response. There are days when it just feels simply useless despite my best efforts. How does one stay on the side of optimism when it feels the odds are constantly against you?

I found this little prayer box at a local garden store. It has three little angels inside for prayers. I wish it had three hundred. I need all the little prayer angels I can get. Each little angel is carrying a special prayer. As hard as things get I know God is there, and I have to keep trusting "where there is a will there is a way."


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

Friday, June 3, 2011

Finding Hope

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Noah's little "Miracle Garden" is doing wonderfully. Every sprout is up and thriving. It really is a special little garden and it is so wonderful to watch it grow. Sometimes it is hard to find the excitement in each day, knowing that Noah cannot catch a grasshopper to show me, he cannot play in a sandbox, or splash in a wadding pool. I don't get to experience any of those things with him. I wish I did. I try to find things to fill that void and occupy that space in my heart that craves such things, like watching a simple garden with the hope that it grows. Yet I still feel so robbed of all the things Noah and I should be able to do together. I'll put Luke in an outfit once worn by Noah, and think this is what he should have looked like, moved like, and sounded like. It feels so unfair that Luke can do these things and Noah cannot. Having a other child that is capable of all physical abilities in no way lessens the pain and loss that you feel.

I feel Chris losing some of his unwavering hopes that Noah will walk and talk. I see him trying to accept things, I hear the worry in his voice - the fear as he tells me Noah must never be institutionalized or put in a group home after we die. It is especially difficult for me as I always lean on Chris for his optimism about Noah, and to see him starting to worry about Noah's future makes it harder for me. We both are starting to detach ourselves from the love we have for this home. Deep down we know time is limited for carrying Noah's growing body up the stairs, and we realize he may not be capable of getting up them on his own. It brings constant uncertainty to our lives. We cannot plan our future in anyway as we do not know what tomorrow will bring us.

Noah seems restless these days, the weather is warmer, and we should be outside doing things, but Noah has no swing set, no outdoor activities. He's getting heavier for me by the day. His long legs dangling as I struggle to carry him. All he has is a therapy mat to lay on to watch the sky and clouds above him. He gets board easily, causing him to have mini tantrums. I feel his frustration, being locked in a body that doesn't work, unable to communicate to me his needs.

I dream of healing, I would the gift of someone or something to repair him. I find myself often searching for hope in all the wrong places. Internet searches for children that are doing better, therapies or equipment that are bringing successes, stem cell therapy clinical trials, the list could be endless. But I am learning hope isn't on the computer, it isn't on a google search, it's not found in someone else's blog or website. If anything you could quite conceivably make your aching heart worse by trying to find it in all those places. I have to find hope by looking at Noah. At his small fragile little body, by looking into his eyes and telling him he can do this, that he himself has to want this for his life as I can't do it for him. He himself is the hope.

"Hope never abandons you; you abandon it."
George Weinberg


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