Tuesday, May 24, 2011

Put a Little Spring in Your Step

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Yesterday was the first day I attempted taking both boys on a walk by myself. I tried to gather all the things that would prepare me for making it around the block and back... water, keys, garage door opener, a receiving blanket for Luke to block the sun, a bottle for Noah in case he screamed and I needed something in a pinch... got the stroller ready, put Luke in then car which was close to the stroller. Put Noah in the stroller strapped him up, quickly snapped up Luke in the snugglie as fast as I could as Noah hates to wait and gets upset quickly. Rushed out the garage door and down the street like I knew what I was doing. I got four houses down before I realized I had no shoes!

So I throw the stroller in reverse only to toss the garage door opener out of the stroller as it shattered into several pieces. As I bent down to collect all the pieces to put the garage door opener back together the strap on the snugglie came undone. I couldn't re-hook it without taking Luke completely out and starting over. So one handedly I scramble to put the garage door opener back together only to realize I killed it. Thankfully I had remembered a set of keys, as a back up plan. So I run back unlock the doors feverishly all the while Noah is starting to whine and gearing up for a tantrum if I don't hurry, and I'm still holding Luke with one arm since I lost the left side of the snugglie support. Find some flip flops and we're on our way.

I'm surprised I just didn't give up and call it quits. But I kept going and we made it all the way to the elementary school up the street. It was field day. It didn't make me as sad this year to watch the other kids playing as it did last year. I think for me it was more of one last tour of a goodbye since the school is permanently closing due to budget cuts. It would be last time I'd ever see school kids playing there. The end to a piece of my childhood. It was okay to say goodbye, it was closing the door to memories of a little girl that had no idea what lay ahead for her in life. A time when life was innocent, sweet and easy.

I walked one last time where I learned to skip double rope, where I threw sand on the slide, where I fell off the monkey bars and landed in the nurses station, where I watched Blair whip out his boy parts on recess and pee in the tunnel. I passed the bicycle cage where the bikes were kept during the day, visualizing mine and how proud I was when I decorated the spokes with paper ribbon in red white and blue to match my patriotic outfit for a elementary school parade. I remember the tree that little five-year old Emily and I sat under when she told me her mother died of cancer, and I cried for the first time for another human being as we hugged. The gazebo that no longer exists that I would eat popsicles under. And the field where I let my monarch butterflies go that Mr. Waddingham had helped us hatch from their cocoons. I could still in my mind hear the bells ring and the sounds of happy squeals. I could see my small self lining up in order to go in to wait my turn for the drinking fountain. Life was truly beautiful then. What a wonderful little girl I was. I was precious and I miss those tender years in a lot of ways. I'm glad I didn't know then what life would be like when I got older. I am glad I enjoyed every beautiful moment that was brought to me, and that I had no worries. What an easy and wonderful childhood. I can only hope that my boys have a childhood that is filled with such memories.

After exchanging some hugs and conversation with a friend that I once worked with that I see from time to time that was watching her child participate in field day, the three of us headed back home. The walk back was slower paced. I had burned all my energy. My left arm was heavy from supporting Luke's weight that the snugglie had failed to provide. My right hand sweaty from being the only hand to push Noah in a stroller. I had wanted to drink the water I brought but failed to have a third hand to do it with so I trudged on. Me and my two boys. I think I was a bit lonesome on my walk. Sometimes I feel as if I am walking all alone. But I wasn't really alone because I am walking this road with these two sweet boys. Just the three of us.


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

Sunday, May 22, 2011

Sure it Hurts...

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Today, I had to go shopping for necessities, so I bundled up Luke since I'm his only food source, and my mom for an extra set of hands, and Noah and daddy stayed home to cuddle and take a nap together. We bumped into an old friend that we hadn't seen in years, she didn't know much about Noah other than I had an older child. Probably through the grapevine as people talk. I'm sure I'm quite the topic... the girl up the street that went to school with so and so that had a "damaged child"... did you hear? We explained Noah and having quadriplegia cerebral palsy. She was completely un-interested, in Noah. She went on and on about her "normal developing" grandchildren how they run and run and she can't stop them, how they tug at her hair and are busy and into everything that are Noah's age. As my mom quietly says, Noah may never walk. Yet she kept going and going, and said it was great Luke was fine. Some people talk around it. I tried to read in her eyes was it because the topic made her uncomfortable? No. Was it because she didn't know what to say to me? No. It was because her perfect life trumped my non-perfect life. After all how does one go about bragging about a child that cannot sit, crawl, talk, walk or even self-feed? Saying my child is able to roll about on the floor doesn't entitle me to boasting rights like other parents. I used to think I represented a parent's' worst fear, that I'm a prime example of what could happen. So they could not go there in their minds to discuss it let alone comprehend what life for me must be like. But the more time goes on, I just think some people are plain flat out ignorant and insensitive. There are no good excuses for some.

The question everyone seems to be asking: of course Luke is fine. What happened to Noah is not my fault. It is not Chris' fault. It is automatically assumed that just because Noah has cerebral palsy that Luke does too. Cerebral Palsy is not genetic. And it hurts to hear people say well at least you have Luke. No, at least I have both of my children. Both boys. Just because you have a typical normal developing child it does not erase or ease the pains of a having a special needs child. Suddenly you have a normal child and no one wants to acknowledge Noah's existence they only want to ask how the one that doesn't have problems is. It doesn't just make everything all better. I will still grieve the loss of my first born's motor skills, I still will ache for him and all he should be able to do until the very day I take my last breath. Watching Luke do things Noah should be doing is difficult. I want those same things for Noah, how can I not? Luke will grow up attending therapies, and watching his parents work with their older brother, it will never be like most households.

I've continued to struggle to find a way to pay for upcoming hippo therapy for Noah. It's frustrating when I hear other special needs parents spending hundreds to have their nails and hair done, off to the spa, off to the Caribbean for a vacation while respite care tends to their child, still while receiving fundraising funds... all these wasted thousands of dollars that I only wish I had for therapy purposes. I've never had a massage, can't have my nails or hair done, there is no pampering, no vacations in our future. But that is okay. It doesn't bother me, I am not jealous. I don't want those things. But what I do want is the opportunity to help my Noah. And I can't. I would love to be like the rest and have all this extra money floating around plus whatever else fundraising provided. It feels like some of these families are double dipping. If you have the money to go on a Caribbean Cruise then why are you fundraising? Cancel your fancy vacation and use it to help your child. I can't think of the last time I bought a pair of shoes, or make-up, or anything for myself. And I hear the excuses "you need to take time for yourself." What time? There is no time for me. There never will be. My days are consumed with therapies, and tending to a child that is in no way self-sufficient. I don't have the luxury of trying to potty train my two year old, or reason with him over why he can't have a toy, or communicate with him about being sick. I don't have anything that resembles a normal life. Just because a new baby came along doesn't mean life got all lolly... it is still the same hardships it was before, the only difference is there is another beautiful soul to love and a sweet little brother for Noah, a built in friend who won't look at him any differently. Luke, unlike the rest of the world, will see his brother for what he is, not what he isn't because he won't know anything else.

I've learned I can't change the way people respond to me having a special needs child. You can't force someone to feel things they don't, you can't educate them, you can't replace a cold heart for one that beats with love and understanding. Sure it hurts... but there are lots of things in life that hurt. You just keep picking up those broken pieces of your heart and you carry on.


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

Friday, May 20, 2011

Time for Therapy

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I've been trying to balance mothering a special needs child and a newborn. It's much like probably having a twins, trying to feed both at the same time, soothe two crying at the same time, carry two at same time. Except Noah is much bigger, and harder to care for than a little ten pound baby. Noah is at least able to look at his little brother now without a meltdown which is improvement. Luke of course has adored Noah from the beginning and is just patient and quiet.

I of course have also been on a mission to figure out Noah's therapy. Which is very time consuming. His doctors and therapists have recommended Noah enroll in hippotherapy as they think it will help his trunk and head control more. They recommended a place close to us, which costs $750 for every 10 weeks. And Noah would need continuous therapy there year round. Which added up is thousands. Supposedly DDRC (Early Intervention) pays for hippotherapy but when the center contacted DDRC they said the budget could not help our family at this time. Insurance won't go near it, which leaves Chris and I on our own for funding. I don't know whether to find some type of fundraiser, or grant or where to start. When you are told your child needs it, you just have to find a way... somehow. We meet with the ranch for hippotherapy next weekend to do a meet and greet of the therapists and horses to get Noah aquainted. I really think he'll do quite well, he made a great horse connection last fall at the pumpkin patch and showed no fear and the horses took to him immediately. His doctor even was hopeful that it may even prompt speech to start. Which would be a dream come true.

I've also been trying to figure out a better way to get Noah to be more calm at meal times. He gets overly exicted and his arms just go everywhere, knocking spoons out of your hands, the food gets dumped if it gets too close to him, the dogs are loving it, but clean up is terrible. For the longest time Noah has hit his knees on the highchair tray, so we took it off, I found knee pads deisgned for crawling children, to put on him so we can try the tray again in an attempts that it may help limit some of his arm movements and that he may try to learn to pick things up off the tray. I also found a gadget called the Tumzee recommended by a friend that also has a son with special needs. http://www.tumzee.ca/
It is designed to help Noah with his hands and head in crawl pose. I hope he's not too big to fit into it. I'm also going to try hanging the Wingbo swing my mom got him downstairs to see if that type of motion will spur any type of crawling effort.

Always trying to think of ways I can better help him. I still always feel like it is never enough. That Noah has the potential to get better if I could only provide him with all the therapy and equipment he needs. Noah has been doing well with the Ipad. I've found some great sites that offer free apps on a regular basis, since we cannot financially afford to by apps for Noah. Babies with Ipads, Moms with Apps, and A4CWSN (Apps for Children with Special needs). A4CWSN is having an apps party June 11th at 9am, where you can score lots of apps that you could not otherwise afford. http://www.a4cwsn.com
Everyone that attends the app party is guaranteed at least one app that would cost money to otherwise purchase for special needs.

The Two Angels Foundation 5K walk is this Sunday. I don't think I have what it takes to run after having a baby so soon, but Noah was invited to attend the special needs adaptive dash, which I think he might really like to do. He's a bit older now and his daddy could run him to the finish line in a stroller, maybe next year he'll be able to do it in his gait trainer. That would be fantastic. It is a great cause and I would encourage all those in the area to participate and run for such a good cause: http://www.twoangelsfoundation.org/id17.html
They also serve a light lunch, goodies and refreshments after the race, and it really is a wonderful opportunity to meet other special needs families and children.

Noah is refusing to walk in his gait trainer, I fear maybe I got him the wrong one. He seemed to walk fine in it at therapy that one time and I really thought he needed somewhere to place his hands, where the kid walk did not provide for that, but I see all these other kids his age walking in gait trainers called the Pony or the Mullholland, or even the kidwalk and I start to doubt whether I made the right equipment choice for him. There are so many things out there, how would I know what is the best for him? All I have to rely on is what therapists tell me may or may not work. And now I'm stuck with this Rifton Walker and what if he never walks in it? What if I failed and he needed the Mullholland or the Pony? Now I'm just out of luck because insurance won't fund something else.

Please continue to pray that I can find a way to get Noah the therapy he needs, I'm trying not to stress about how to do it, and just letting God take the lead, it's all I can do, it's kind of out of my hands. I've tried all avenues I know to try.


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

Saturday, May 7, 2011

A Grandmother's Love (Happy Mother's Day)

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Before Noah was born, my mother loved him. After he was born she loved him even more...

When our lives were shattered with Noah's diagnosis, my mother found a way to hold us all together. We felt the loss of many friends and family members who were unable to cope with our circumstances, yet my mother stayed by our side, and constantly reminded us we were not alone. She has dried the tears that Chris and I both have cried and shared in our small joys. She's hugged us both during some of our hardest days and nights. Encouraged us every step of the way that we were doing a good job with Noah. She never waivers with hope and faith and continues to believe all things are possible. In the middle of the night you can often find her snuggled next to Noah. She comes at all times of the day to soothe a distraught toddler and to help his overwhelmed and exhausted parents. She holds our hands through hospital visits, and accompanies us to all emergencies, even holding her small grandson's hands in an ambulance ride.

Knowing our ability to get out is harder than most, she often shops for us, tends to errands and picks up dog food on her way home from a long day at work. She gets up hours early before work to come assist me in getting my morning started and help with Noah, knowing that it makes her day longer and more tiresome. She gives of her heart and time so freely, never expecting anything in return. When she looks at Noah it is with such intense love, that she sees no physical limitations, she speaks to him when words do not exist. She's learned how to carefully feed, clothe and bathe his fragile and floppy body, and learned to protect his head as he fumbles to find control. She holds him when he's upset and rocks him to sleep so ever gently in her arms. His long body stretched out across her lap, as she holds him as if here were still the tiny baby we brought home. All the while looking at him with such awe.

Noah is never off her mind as she comes home with clothing, and supplies, and diapers for him or toys that might help him with his development, all the while she lets her own wants and needs go to provide for this tiny little person that she adores. She has immeasurable patience for Noah, never getting upset that he cannot do something or requires extra help and attention. Never once has she ever spoken an ill word, gotten upset with him, or given him an unfavorable glance. She is Noah's earthly angel guiding him the best that she can. We are so blessed that she is along this journey with us.

She did not stop mothering when my brothers and I were grown. She's continued to love us and provide for us the best she can even into our adulthood, sticking by our sides always, unconditionally, and without limits. A mother's job is never done, it's never over, it is death do you part. And my mother has embraced her special needs grandchild with open arms, loving him beyond all words. She is amazing, and everything I hope I can be for my children now and always.

My mother has taught me that we are equal in this world and that no one person is ever better than another. She's kept me humble, even when my goals and dreams were soaring in the clouds. She's comforted me during my mistakes, and taught me how to learn from them. She's taught important lessons like "you can catch more bees with honey than vinegar", "patience is a virtue," and "good things come to those who wait." She has demonstrated on giving without receiving as she often gives her last pennies away to those she sees on the streets, is willing to talk to a stranger that has no home or gives a ride to a stranded person in need. I have learned from her example. She has taught me to love thy neighbor no matter what and to find at least one good thing about each person I meet. She has helped mold and craft me into the person I am today.

Without her important life lessons, like "put yourself in someone else's shoes," and "To never judge a book by its cover," I wouldn't have been properly prepared for raising a child with special needs. Because of her I have tried to become a person who is kind, patient, non-judgmental, fair, honest and loving. She's taught me to hold my head strong even when the odds seem against me, she's taught me to stand up for myself and for others when I see wrongdoing. She's given me the confidence and love to continue to grow as a person, to not limit myself in only what I know today, but to encourages me to seek out new personal growth in each day, to learn something new, and most of all to count all my blessings. I give my thanks to her today and everyday for the special person that she is.

"A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts." Washington Irving

With Love,

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