Tuesday, September 18, 2012

Wholehearted Parenting

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God knows I am giving this special needs journey with Noah everything I have and then some. Around every corner there seems to be someone who wants to jump in and tell you that you could be doing more - could be doing things differently - could be doing things better. I'm trying. I'm trying as hard as one mother can try. I can push Noah only so far before I break him like a fragile vase. We're pushing Noah as much as we think is possible without crushing his spirit. Eight hours of a special needs camp isn't going going to "fix" Noah. Demanding he be forced to walk for two hours a day, or scolded if he soils a diaper at almost age four... that isn't going to "fix" Noah's quadriplegia cerebral palsy. There are lots of parents with typical children that push glory onto the next generation. I know, as I came from a father that did that. He demanded that his children be nothing less than a concert pianist and major league baseball star. When we both fell short, his withdrew his love from us. Most importantly I don't want history to repeat itself, I don't want to place demands or goals that can't be reached. I don't want Noah to ever wake up and feel that he's less because he can't walk or talk. That somehow I won't love him as much if one day he doesn't stand up on a podium somewhere and make this incredible miracle speech and walk to accept a diploma. Noah will never disappoint us. It's impossible. I am living without expectations for either of my children. I'm just thankful they both are here, breathing... and happy.

Sure I dream of a world where Noah's physical abilities are restored, I haven't given up hope and faith that they still may. I always am praying and asking God for that miracle. And you hear of children that don't talk until they are five, don't walk until they are twelve. It happens. It's possible. But I want Noah to feel he's doing it for him, not for us. That he will be loved no matter what the future holds. And that as a family we'll face the unknown together, find courage and hope together.

I stumbled on something the other day called the Wholehearted Parenting Manifesto from Darling Greatly - Brene Brown. It was beautiful and everything I feel about our family's life. I hope you enjoy it as much as I did.

The Wholehearted Parenting Manifesto

Above all else, I want you to know that you are loved and lovable. You will learn this from my words and actions - the lessons on love are in how I treat you and how I treat myself.

I want you to engage with the world from a place of worthiness. You will learn that you are worthy of love, belonging, and joy every time you see me practice self compassion and embrace my own imperfections.

We will practice courage in our family by showing up, letting ourselves be seen, and honoring vulnerability. We will share our stories of struggle and strength. There will always be room in our home for both.

We will teach you compassion by practicing compassion with ourselves first; then with each other. We will set and respect boundaries; we will honor hard work, hope and perseverance. Rest and play will be family values, as well as family practices.

You will learn accountability and respect by watching me make mistakes and make amends, and by watching how I ask for what I need and talk about how I feel.

I want you to know joy, so together we will practice gratitude.

I want you to feel joy, so together we will learn how to be vulnerable.

When uncertainty and scarcity visit, you will be able to draw from the spirit that is a part of our everyday life.

Together we will cry and face fear and grief. I will want to take away your pain, but instead I will sit with you and teach you how to feel it.

We will laugh and sing and dance and create. We will always have permission to be ourselves with each other. No matter what, you will always belong here.

As you begin your Wholehearted journey, the greatest gift that I can give to you is to live and love with my whole heart and to dare greatly.

I will not teach or love or show you anything perfectly, but I will let you see me, and I will always hold sacred the gift of seeing you. Truly, deeply seeing you.


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

Thursday, September 13, 2012

Land of Disappointment

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As I had predicted Noah's exchange on his demo Freedom Concepts bike will only include standard equipment and nothing that will really be customized for Noah. We were first sold on the idea of a Freedom Concepts bike with the belief that it was a product that offered the most customized options for a child with severe cerebral palsy. That they had the potential to be custom made for each child's particular needs. And while I think that's still possible; the kind of features and customization that Noah would need would exceed more than the $2,500 donated funds between two foundations. They won't fund things like a raised pummel seat so Noah doesn't slide/arch forwards, a Neoprene Hip Stabilizer because we are significantly worried about movement in his hips, sheep covers or sunshades for sensory issues, or even leg braces so that Noah's legs don't turn inwards while pedaling... all of those things would cost thousands more. Chris and I have surrendered to the fact that our original goal and dream for Noah isn't happening as we had hoped and intended for him. Freedom Concepts will exchange Noah's rusted demo bike with another bike on Tuesday with changing a few features to include a closed handlebar, headrest, footplates, and a narrower seat. Will that be enough to make it the right match for Noah? I really don't think so. I'm trying to be optimistic but realistic at the same time. But it is what it is, and it comes down to money like most things do.

This week will be Noah's second week at hippotherapy with a new horse. Dock retired and Chris and I are really sad about it. Strangely we both felt a connection with Dock - a trust - an unspoken caring that we felt from him. We both had trouble bonding with Lightening - Noah's new ride. It wasn't that Lightening really did anything that spooked us as parents, he just rather seemed uninterested and lazy. Dock just gave us a vibe that he knew what he was doing and was going to do the best job possible at helping Noah. Lightening just wanted to nap afterwards rather than really get to know Noah. Although Lightening is about the same height Dock was he's a bit wider so he provides more movement. And although the therapist reports that Noah handled the extra movements well, I still have some reservations about it all that I can't quite put my finger on yet. Maybe we'll feel differently this week with Lightening. Maybe we're just missing Dock too much. It's hard when you find what you feel is a perfect match and things change.

Still no progress on our Mygo Lecky Feeder/Activity Seat with hi/lo base. That's a huge thing for us right now something we really need and something we're very frustrated about. And there is no way I could find a foundation able to help with that kind of a cost; no way I could fundraise enough, no way we could fund it out of pocket. I'll wake up in the middle of the night and stew about it all. My mind wanders to what haven't I thought of or tried; a shed a pint of tears into my pillow trying not to wake up the household. I hate it when my hands feel tied. I keep trying to think of ways to get around these constant roadblocks with little success. But Noah depends on me to come through for him - so I carry on each day trying to find ways around all these continuing obstacles.

Noah has started to apply a lot of pressure his index finger with his thumb causing self-injury. So I spent six hours researching inexpensive thumb splints I could afford. $18 for each hand was the cheapest I could find. Hopefully they will help. It's the best I could do under the circumstances.

Noah's feet are still too small for winter Piedro shoes that are the appropriate size for him. There a vendor that is in New York that does custom molded shoes but they are $700 out of pocket. Unbelievable it's not a typo - $700 is the cost. So to say to say the least we can't go that route. I contacted a new orthotic vendor that I'm hoping can offer Noah something for now. My two product choice options are Sure steps and Keeping pace. Keeping pace definitely has a more attractive line and I didn't much care for the sure steps that Noah had previously. His Piedro shoes that we purchased out of pocket were really the best stabilizing shoe. But once again I have to go with a different plan. I really liked a high boot option for Noah but non of them look like they come in a velcro style and Noah isn't a fan of laces. We need something that we can quickly put on him. He'll fight us if we have to lace up something. But hopefully the orthotist will have some ideas or options for us that maybe I haven't thought of.

We put in a request in for a stander for Noah. We're hoping for a sit to stand device that I think would help Noah with sit to stand patterning and would be easier for me to load him into. I fear it's time to get Noah weight bearing and we really need to move forward with those types of equipment. I don't know that it will be approved or not. But I continue to be as hopeful as I can be knowing that it too could likely face the same uphill battle that I'm facing with the Mygo Leckey Feeder Seat. How I would so love it if I didn't have all these worries, headaches and daily battles on Noah's behalf. If I could just be mom. That I didn't have to spend hours advocating for Noah each day. That we could just be. Maybe someday - but for now I fight on.


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

Tuesday, September 11, 2012

Fraud Woes

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We have a lot of days where we already feel kicked completely to the ground - and just when you think things can't get any worse we received a call today telling us that my identity and at least one bank account card, if not more has been stolen. Debits have been coming out of our account for a minimum of five days and have depleted our funds. We've talked to the fraud department at our bank, cancelled all debit cards. With the multitude of things already going on in our lives this is the last thing we needed to happen. I know that criminals don't discriminate. I know all about identity theft problems with the years I worked within the court system, but once again you always feel like it can't happen to you - and it does. I've ordered a copy of my credit report and can only pray that it's isolated just to my debit card and that they haven't obtained my SSI number - or we'll have a much bigger problem to handle.

Of course behind the scenes we've also been fighting hard to get approval for a Mygo Lecky Feeding Chair with hi/lo base. It's not going well. It's deemed as a non-medical necessity even though Noah needs this for safety. His special tomato seat that was donated by a loving foundation doesn't have the safety we need. Noah's tone is so strong he can snap the latch on the back neck piece undone which causes him to slip out of the harness and hang by his arms. The equipment vendor thinks I can just find private funding. Everyone thinks I can find private funding. No one has any clue on how hard help is to find. It's nearly impossible to find. We're still fundraising for Noah's service dog. There's now way on earth we can even come close to fundraising for everything Noah needs. And there are so many other items that we need to fight for soon not limited to but including a bath chair and stander - all of which face a similar denial of non-medical necessity, won't improve quality of life, or not offered as a paid benefit under Medicaid.

We re-measured Noah for an exchange on his Freedom Concepts Bike yesterday. And had a re-look at accessories and features Noah would need. His therapist had a long list of items she felt Noah really needed on this bike. And although I haven't heard back from Freedom yet, my heart tells me that there is no way Freedom Concepts will be able to accommodate Noah's needs without telling me the same thing as Noah's equipment vendor - go find more funding.

I prayed so hard that God would make SSI stop sending me notices. He granted my prayers and for a whole month I had a reprieve of no notices. However, last Friday a big stack of mail with a handwritten "return to sender not at this address" arrived in my mailbox. The US postal service had been delivering my mail to another address this whole time. The address is correct on the label so why the Postal Service wasn't getting it right is beyond me. I can only hope that this mail problem isn't a part of my identity theft development. As always I'm confused by SSI's calculations of help for Noah, but he's still active for benefits at this time so that's really as much effort as I can give it right now.

In addition of course to all the above difficulties; I've also been battling a sciatic nerve problem every time I pick up one of the boys. And the pain is so intense it stops me from completely walking on my right leg. The reality simply is carrying a growing Noah with his arching tone, lack of head and trunk control is taking it's toll on our bodies. It's hard. We have a lot of stairs and we have to carry Noah everywhere. This is far from a handicapped accessible home. Just lifting him out of the tub his a big challenge. And everyday I carry him down a large flight of stairs from one room to another and several trips in and out of the car for therapies, not to mention that special needs equipment weighs a ton. I keep trying to find ways to get my body to go the distance after all I will have to do this for the rest of our lives. And I'm the only set of arms Noah has during the day.

We're rather used to life storms, but sometimes these storms are like hurricanes. And right now this hurricane is knocking us off our feet. As always we know tomorrow is another day and that each new day has the hope for miracles.


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

Saturday, September 8, 2012

The Short Straw

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Noah's Therapy School Picture

Drawing the short straw, bad luck, and life’s misfortune often comes to the minds of those who see you with a special needs child. Some may turn away trying not to notice, some look extensively out of curiosity, while others are brave enough to engage in a brief conversation. There are even a handful of strangers that I find genuinely care, and would love to extend any support and caring that they can.

The doctor’s voices still ring out in my ears like an echo that won’t leave my side: “he, suffered a global brain injury at birth as a result of not breathing or having a heartbeat for the first thirteen minutes of life. The prognosis is grim he will never learn to crawl, walk, or talk.” Some days the dismal predictions seem haunting; while other days you think you can continually find hope and faith that those early voices were all wrong.

Although Noah is still quite young at his tender three and a half years of age, it is apparent to many visually that Noah is indeed different in some way from other children his age. Even in a stroller you know just by how Noah moves that he’s not a “typical” child according to what most people measure as such.

We’ll be out shopping and the most common phrase is “somebody looks tired.” Noah’s little floppy body and lack of physical support often make him look sleepy even when he is not. I’ve never been embarrassed to discuss Noah and his special needs. I’ve grown rather proud over the last few years that he made the choice to stay on this earth and allow me the privilege of being his mother.

One sales representative a long while back, was quite blatantly honest and said, “I just couldn’t handle that if I had a child like him.” Her remarks were not intentionally aimed to hurt, her honesty just slipped off her tongue in a natural, casual fashion. This life isn’t something that anyone decides they want. It lands in your lap life a mysterious gift, all wrapped up in a brown paper bag with the most intriguing bow so you know that the gift inside must be nothing less than magnificent.

You open that gift, with such anticipation only to find that it wasn’t at all what you were expecting, nothing at all that you had asked for. Yet you find that it was exactly what you were intended to get, if that makes any sense at all. That gift was designed just for you because not everyone with that gift would or could accept it.

There is nothing about having a special needs child that is about drawing the short straw, bad luck, or life’s misfortune. One of the possible reasons I was gifted with a special needs child is because I would have never answered honestly “I couldn’t handle it if I had a child like him.” Unknowingly, my heart was open to endless possibilities, good or bad. I would have never rejected my gift for any reason.

Certainly my life’s gift has proven to be the most challenging task of my life. It’s come with many tears, heavy worries, and sleepless nights. But it has also filled my days with profound love and gratefulness for the smallest things I may have. I find such beauty in simple things like watching a grasshopper wipe water drops off it’s legs, finding magic in a butterfly that hovers over a delicate flower, or watching a single leaf drop gently to the ground and anticipating the sound of a light crunch as it hits.

Life often feels like it is moving in slow motion. Noah isn’t meeting milestones. There is no rush to chase him around or to keep him out of trouble. He too, observes the world differently because of his physical limitations. . I’ve slowed down to participate with him. He’s teaching me to see the world how he does. And it is more beautiful than I could have imagined it to be.


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

Tuesday, September 4, 2012

World Cerebral Palsy Day

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Today is World Cerebral Palsy Awareness Day. In honor of today, Noah's Inspiration Through Art foundation photographer, Lisa Kitto, helped me make Noah's awareness photo. I wish I could tell you the world was filled with love, understanding and kindness for Noah, but that's simply not always the case. Even this past weekend we took Noah to Dairy Queen, as ice cream is quite arguably his most favorite food group. There was a long wait in line and Noah immediately started to get impatient. He doesn't wait well - he hates being stationary or waiting for anything. There was a couple in their middle years who asked the ages of both my boys. I told her and she then responded that the she thought at the age of 3 1/2 that I as a parent should have taught Noah patience. I replied of course that it was very hard to attempt to teach a child who was non-verbal with quadriplegia cerebral palsy patience. And immediately she turned to me and barked "And you take him out in public like that?" Well yes after all cerebral palsy isn't a disease and I'm not just going to hide my disabled son from the world.

Thankfully minutes after we got through line there was an adult man in an electric wheelchair waiting in line next; his speech was hard to understand and slurred with his two service dogs, a wedding ring on his finger. God always places people in my path as he knew I'd see it as a sign that I was not alone and sending me hope that yes Noah too will find his way in an often hard and cruel world. As we loaded the boys in the car an elderly couple approached, I braced myself for whatever was next, but they lovingly said they could just hug and squeeze both my boys, wished us a happy ice cream experience and we were on our way. There are some really wicked people out there. Can you make love grow in their hearts? Likely no. Can you teach them to be kind and have acceptance for a little boy who is very disabled? Likely no. Acceptance is a choice. I can't educate anyone, I can't make anyone feel something they don't. But God is always watching. Always. So it's not up to me to keep score of those who treat Noah as anything less than the beautiful little boy that he is. I can only be the best mother I can be; the best role model to my children; and to remember to always treat everyone as I would like them to treat me and my children.

Noah has been increasingly joyful lately. His laughter is such a heavenly sound. His dad and I both smile and are filled with such comfort that our little guy is so happy. Despite his challenges he still is happy to be here. I bought this little pop-up play tent for Luke since he's in a hiding play phase, but ironically Noah has found more enjoyment in it than his little brother. It's very lightweight with paper-like fabric so he's able to get it over his entire body leaving just his feet hanging out. Chris and I talk to each other like where is Noah? We can't find Noah... where could he be? He knows he's hiding and just laughs at us trying to find him. We love this new game that we play. It's so normal for a 3 1/2 year old to play in this way and reaffirms to us that Noah is just like any other kid - he just goes about it a little differently.

In honor of Noah, the next disabled person you see - regardless of the age or disability - say just one thing that is tremendously loving and kind. Remind them they are accepted and cared about in this world.


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