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