Friday, February 26, 2010

We are Still Aiming for the Stars

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The last update in Noah's journal apparently started a huge firestorm of not-so-kind reviews. Chris and I realize that not everyone is going to agree with our decision to put traditional therapy on hold while we explore something new. I've heard we're foolish, stupid, buying false hope, not accepting things as is, wishing upon a star that doesn't exist.

I understand that there isn't a single person that believes Noah has the potential to one day crawl, walk and talk. People take every opportunity that arises to point out to me there is no cure for brain damage, that Noah isn't going to one day be recovered. Chris and I are the only ones that hold that hope and belief that it is possible. That doesn't mean that I'm "delusional" or that I can't accept "reality." I never forget what our reality is every time I look at that precious human being laying on the floor knowing that he cannot move on his own, cannot look up and say mamma, that he isn't standing up or sitting in his crib each morning waiting on me. That he can't feed himself or even hold a bottle. My reality never escapes me. I live this every single second of every day. Do I wish it was different? Absolutely I do. Not just for me. Not just because I'm a selfish mom that wanted a normal baby but because I want it for Noah. I dream big for him. And I can't find anyone else willing to dream big for him but me. Don't hope, don't expect, totally accept this is your life. I am so over hearing that from everyone.

No mom says when they are pregnant, boy do I wish that I'd get blessed with a special needs child that has complications? Who would want that?

You quickly find out that your support group turns on you, because you're not doing all that they are for their children. If you aren't participating in every single option of treatment you suddenly hear that you're not doing enough. As Noah's parents we reserve the right to participate or decline any treatment we like. That's our right as his parents. We also reserve the right to feel any way we choose about our life. If I'm sad or worried, that's my right, if I'm happy that he can get his butt up in the air, that's my right. Don't steal my thunder and try to slap me down. I don't have the luxury of posting Noah's first steps or his first words like other moms. I get to post little things like Noah rolling and is bringing his knees up. I've been boldly reminded that all of Noah's progress still doesn't give any promise that he'll ever become anything.

What is most disappointing is that a lot of the judgments and negative feedback comes from other moms with special needs children. We expect that kind of thing from family and friends that have no clue what this side of the fence feels like, but how could you not root for another special needs child when you have one of your own? This isn't a competition to see which child recovers the best or the fastest. This isn't a chess game that you play that my stem cells trumps your ABM therapy. I would never dream of approaching a parent and telling them my way was the only or best way. I'm navigating blind doing the best I can do with my inner compass.

I'm over hearing that I'm terrible because I don't do fundraising events to get Noah other forms of treatment. It's great that other parents chose to, but I refuse to ask for money for the simple belief this is our burden and our burden alone. I am not naive enough to think that I am the only person in the universe that is battling financial woes. Every single person out there is battling a hardship of some kind. Every single one of you reading this has a heavy load of some sort. Every person that has kindly helped our family has done so on their own, and we remain forever appreciative but in no way expect such help.

I actually disabled Noah's sites thinking I was completely done with reporting how Noah was doing. One person can only take so many beat-ups before your raise the white flag and say enough. But if I do that, then I take away the hope that another mom might need for a baby like Noah. There could be another mom out there feeling just like I do. Another family struggling just like we are. Another family fighting the good fight to disprove all those doctors and therapists. The negative world wins. Most importantly all of Noah's earthly angels would be so heartbroken not to hear about how he's doing.

If you are around me in anyway I expect that you will be in Noah's corner. You will say he will do great things, you will give us hope, you will not tell me he will not do something, you will not tell me I'm not accepting today. I do not have room in my life for it. And if you are a medical professional or therapist I strongly encourage you to do that for every parent in our situation. You aim for the stars, you don't ever tell us that star doesn't exist. I'm spring cleaning early and if you're not on board then you're not apart of this journey. If I have to weed out every unkind person or family member in the universe then I'll do it, because Noah only deserves those that offer him the stars. He deserves that I find him all the love and support one can gather. If that means I have to password protect his blogs then so-be-it. I will find a way around every unkind word and person that is thrown at me.

This life isn't a piece of cake, and it is in no way helpful to tell me I'm a "defect" of a person because I can't get over that I have a brain injured son. If I want to dream of a future where he's able to walk, that's my business. I still happen to believe that with God all things are possible. Don't tell me to get out of the clouds. Don't tell me to get off my knees and stop praying.

Believe in possibilities - Believe in Miracles - Believe in Noah.

Stacy, Chris & Noah

Wednesday, February 24, 2010

Leap of Faith

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Brystal performing her roll-over dog therapy

Noah's Rear Action (without assistance)

We decided to take a huge leap of faith this week. Chris and I decided to put traditional therapy on hold to pursue the ABM method exclusively. We've gone back and forth with the pros and cons for days. The biggest hurdle is wanting to pursue ABM but realizing we are on our own financially to pursue it. Medicaid will not recognize ABM as therapy and considers it strictly alternative. But we both agreed that our instincts are telling us we have to try, even if we fail, we can say we tried it - gave it a hundred and ten percent of all our efforts.

I dreaded approaching our physical and occupational therapist with this idea to put traditional therapy on the back-burner for a while. Primarily because I've created such an amazing bond with them both. They both were so loving and supportive when I told them our plans. And genuinely want nothing but the best for Noah always. I know they will continue to always be there whenever we are ready to start up therapy again, and if I need help or support in the meantime.
We have been doing ABM therapy on an off for the last few weeks. Noah seems to be responding very well to it from what we can tell. Granted people may measure progress by sitting, crawling, walking and talking, but for Noah we have to give him the building blocks before he can do any of those things. There is no immediate cure for brain damage. But I continue to hope that we'll build good bridges with everything that we try. And I think it's important to remember that no one thing is going to be a cure. All therapies are different all results are different and most importantly every single disabled child is different. They are like snowflakes. Beautiful creations but no two are alike.

Noah continues to be a night owl. We're almost to the point where we've given up on the idea that he'll ever be a great sleeper. He just keeps making his bedtime later and later regardless of his napping schedule during the day. He can still make it to 11pm. No matter what we try. And of course he'll still get up a few times in the night after that. Noah has also acquired the skill of putting his butt in the air with both knees bent while being on his tummy. We are quite proud he's learned to do this. I call it the stink bug position since his face still remains planted on the floor with only his butt being lifted. Our littlest dog, Brystal, in the last two days has also decided to become one of Noah's therapists (we're happy she's not charging us for her roll over services). She will walk over to Noah nudge him in the middle of his stomach to get his attention and then rolls over on her back and stays there for minutes before starting the process over again. We think she's demonstrating the art of rolling over. It's quite cute, and loving and I'm happy to report I caught a picture of her in action.

Gives new meaning to "living on a prayer."

Stacy, Chris & Noah

Saturday, February 20, 2010

Acts of Kindness

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Thank you all for all the kindness you've shown our family and especially towards little Noah.

Tuesday, February 16, 2010

Noah's Check-Up

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Today was Noah's baby check-up appointment. There are days when I feel like I simply cannot win. I'm boldly reminded around every corner that Noah doesn't fit any typical baby mold. I'm so tired of filling out these stupid questionnaires, about what your baby can do. Today's questionnaire had no's checked on all 5 pages. He's doing nothing babies his age can do, not one single thing. Why make me fill it out? It's pointless. We all know he's tremendously behind. There is something in every part of my day that is a constant reminder that Noah is so far away from being like everyone else. I'm not allowed to have a normal day. My days are not like everyone else's. It's far from easy, it literally makes you feel like you have this overweight monkey sitting on your chest that refuses to get off and keeps jumping up and down on you for kicks and giggles while you lay there struggling to breathe. And no one ever comes to tranquilize it.

Noah's hemoglobin tests were fine, he didn't even cry when his finger was pricked and he got his very first band-aid which is bugs bunny. As the nurse put the band-aid on his finger she said now don't you eat it, and I had to remind her, don't you worry he can't get his hands to his mouth. The doctor still thinks that Noah is underweight. He is gaining but not fast enough for their liking. He weighed in at 16lbs 13 ounces and has gained a 1/2 inch since his last visit. Now they want me to do blood work to see if Noah has a deficiency in another area that is causing him not to gain weight faster. They also have put in a referral to a nutritionist and GI specialist for weight gain and occasional constipation. My gut instinct as Noah's mother is that there isn't a problem of any kind. There are healthy normal children that fall into this weight category. And it's not like Noah is going backwards, he's not losing weight, and he hasn't stopped growing.

I have days where I try to figure out exactly when was it that God decided that he'd give this life to me. Was it when Chris and I were sitting in the lobby of the doctor's office and I seen a severely handicap child and it's mother and turned to Chris and said I'm so glad that will never be us the day before Noah was born, was it the day I held a down syndrome's friend at a high school dance and said you look so very pretty, was it because I followed all the rules and never colored outside of the lines with my life and God thought I had it too easy? What was it? Could I have changed it? Could I have done anything differently so that God would have made Noah not have special needs? I still have this beautiful fantasy that I'll be able to get Noah to recover almost fully if I keep diligently trying all this therapy, that there is light at the end of this dark tunnel with lights that flash dim and bright. I try so hard not to succumb to the the thoughts of acceptance that Noah will never walk and talk, even though most people take every opportunity to remind me that is most likely true.

I've posted Noah's song that was made especially for him on his website, it is in the upper right hand corner of his site.

Back of every creation, supporting it like an arch, is faith. Enthusiasm is nothing: it comes and goes. But if one believes, then miracles occur. - Henry Miller

Stacy, Chris & Noah

Sunday, February 14, 2010

Be My Valentine

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"And now these three remain: faith, hope and love. But the greatest of these is love"
(1 Corinthians 13:13)

Happy Valentine's Day!


Saturday, February 13, 2010

Noah Gets The Kid Cart

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Noah received his kid cart at therapy this week. I spent the hour trying to learn how to piece it together and take it apart. It's more complex than the average stroller. Noah doesn't seem happy about it. I don't think he appreciates being as restrained. If you ask Noah today I think he'd give it two thumbs down. They also had a back walker there for another child and they put Noah in it just to see what he would do. I honestly didn't expect for him to do anything other than go through the motions and just stand there. However I was taken back when Noah actually moved in it. It was the first moment where my overwhelming emotions flooded and I couldn't hold it back. I was slightly embarrassed that I couldn't contain myself. I suppose there is this feeling that you must remain strong at all times, to demonstrate outstanding courage, hope and love, to find strength and focus that leads all to believe you can completely handle everything that is thrown your way. Tears are simply a sign that there are cracks beneath the strong-front, giving away the secret that as put together as I may try to be that there is still that weak spot in my greatest wishes for Noah to recover all of his motor skills. I think it was simply a combination of seeing him walk, and seeing him in a device in order to do so. No parent I think ever wishes to see their child in any handicap apparatus. I had a good hard cry on the way home, shouting to God just please heal him, please make him fine, please allow him to walk and talk. I want out of the special needs world so ever bad. I want Noah to be able to function like everyone else.

I find that we all wish and want our children to recover to the best of their abilities, not because we cannot accept them "as is." Well-intentioned people tell us we're not living in the moment, we're too focused on things we cannot change, the future that holds no guarantees or promises. That may be partially true, but at the same time we've given life to a human being that is very visibly different from most everyone else, we worry about the future because we hold so much love for this life, we want to know that when our time is done here that the life we brought into this world is capable of thriving and succeeding without us. It's a basic desire. Every good parent only wants the best that can possibly be for their child. It's our love that drives us for a better tomorrow, we have no choice but to accept today.

I've finally completed the Anat Baniel Special Needs DVD series. I've gained a lot of information, increased my awareness of how Noah moves and learns versus how normal healthy babies do, and things we can do better to help him. I thought that it was a very beneficial video and well worth my time. I'm happy we've explored the method and remain excited to see the differences it may bring about in Noah's movements. Most people measure milestones only by sitting, crawling, walking and talking, but the milestones for Noah will be different. Medicaid of course views ABM as alternative therapy and would never consider paying for it in addition or as an alternative to what we're currently doing. Exploring the method will cost us out of pocket. But it would be that way for any parent wanting to explore alternative therapies. Sometimes it is a discouraging feeling. I don't have unlimited resources at my finger tips, I don't do fundraisers, I don't have wealthy relatives, haven't won the lottery, but at the end of the day, money is what makes the world go round. And I have to find a way with what I have to get the very best I can for Noah. In my heart I hope he knows someday how very hard I've advocated for him with what was within my means.

Yet I continue to dream that dream called hope.

Stacy, Chris & Noah

Wednesday, February 3, 2010

Noah Enjoys the Big Bugs

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I took Noah to the Butterfly pavilion for a little outing Monday. Noah loves nature, and clearly is going to love bugs and things that crawl. Thank goodness my my mother introduced me to snakes and my second grade teacher got me fascinated enough with spiders that my mother agreed to let me keep one as a pet in a dairy queen cup in the kitchen window for two years. However with that said, there are still critters that give me the heebie jeebies. They have a new spider that is much bigger than Susie, the pet-able tarantula, it must be nearly my shoe size. It's the type of spider that nightmares are made of. They also have a new exhibit called Tropical Odyssey equipped with as equally freaky bugs in unspeakable sizes (all of which are deceased and pinned to boards). It's more like an active learning center for children. It even had a miniature zip line for children to play on. I watched as other kids zoomed down it thinking that will never be Noah. Let out a sad sigh, and actually wiped away one solid tear before anyone paid me notice. And then I remembered I've already learned the lesson "never say never."

Noah has still decided that sleeping only three weeks through the night was over-rated and we're now back to being up multiple times during the night with a bedtime of no later than 10pm. Chris and I have tried just about everything we can think of to either make an earlier bedtime occur or sleep better through the night, but to no avail. At least we knew that for a short period of time that sleeping through the night was possible. Maybe he's dreaming, maybe it's teething, or maybe it's just another "Noah time" event.

I just completed the third Anat Baniel Method DVD. Each DVD is opening my awareness to new possibilities, new ways of thinking. It has given me a center of gravity that nothing else has done. It has restored what those so very doubtful of Noah's success had taken from me. It has eliminated the negativity and replaced it with amazing possibilities for Noah's future. I am so excited to incorporate this method into our daily lives. Movement with attention I think will benefit Noah's ability to finally make "sense" out of all the "non-sense." His brain makes different connections due to his injury, but the brain is constantly learning, constantly growing and I fully believe for all of us that we can always teach our brain a new way of doing things. Most importantly Anat Baniel speaks about an "echo" - essentially a sign of feedback that means that there's a level of understanding occurring in the brain for change to be possible. In my opinion, Noah has a very strong echo. He socializes, he understands, he's making connections, he just needs help understanding why his body is not moving in ways that are most beneficial for him. I don't really know how long it will take Noah to make these adjustments in his movements, but I feel and believe it will happen. I'd love nothing more than to wake up one morning to a completely recovered Noah, but I will wait patiently for change. Never say never.

Stacy, Chris & Noah