A new year. The middle of the first month of 2012. It has been 4 years since the drama of D's struggle to live began. A day like today we were fighting stupidity and the system back home, in a hospital that grants deaths sentences like passing the sugar. Just a week ago another family contacted us, as their 2 months son is going through such drama in the same place... What a mix of emotions are triggered each time such a call comes! And how much I wished we could be able to really make a difference and help these kids that are not given even the hope of life.
So... Four years later... How does it feel? What has been accomplished? How the future looks? Where are we heading? Who has been there to help? What are we going to do, to make dreams happen? Simple questions... Deep questions...
How does it feel? Well... It feels like Holland (I'll post the Holland essay at the end, for the benefit of those who don't know what's the internal joke/irony of Holland). It feels good. Our girl has exceeded the expectations, and the immediate death sentence. Our girl communicates, has a sassy/bossy/bitchy personality (I don't know where she gets it), is thriving in PreK, amazes everyone who meets her, and keeps on being our own little big miracle. I cannot imagine life without D. I cannot imagine how I could have grown and become better person without her. She brought a rainbow into my black and white life. She brought so many things I could not fathom... I did not change myself, but she changed my outlook for life. I am the same, but better. V version 2.0. Because of her I learned there is good people left in this world that I was mourning... She brings the best in everyone she meets. Because of her I was pushed into making drastic changes... I rediscovered my love for Art, and how much I enjoy sharing it with her as well as doing it for her. I have learned to savor each second of my life, to take it all slow... I was living so fast, ignoring the roses completely, ignoring people and how a single word or glance could affect them. D brings on a warrior with velvet gloves, fierce and cunning yet sensitive and more spiritual. She is the constant proof that God is here, God performs miracles all the time, and it is people who turn away from Him and choose not to acknowledge all that He do. D brought on many gifts... true friends, true family, true love. She is the greatest gift that God granted me.
What has been accomplished? D is alive, healthy, thriving her own way. We are here to fascilitate her life, so she can do what she is meant to do. She can be whoever she wishes, and I have no doubt she will do even more amazing things... She is my hero. No girl should go through all she goes through... No child should have to face so many doctors, hospitalizations, or know what suctioning or venting, or a bipap is. No child should be stranded in a bed unable to move or speak for herself... So far we have fought for her so she lives as a normal 4 year old would... And she loves Nihao Kailan, she loves WonderPets, she's starting to like Barbie, and seems to enjoy rolemodels like Pocahontas and Mulan. D loves her teacher, and is very focused whenever he reads to her, and whenever they do crafts or other school activities. D loves going out... The Aquarium keeps on being her favorite place. She enjoyed watching Disney on Ice, so shows seem to be a new acquired taste. We are working on having her in a power wheelchair so she has a bit more independence. We are working on video-conference so she can meet peers at school and develop some friendships. We are exploring technology like new switches for complete computer control and an exoeskeleton so she can be more independent and do things herself, and a machine to help us do her PT in a scheduled, daily basis (motoMed). We want her education to be well rounded and to expose her to as many things as possible. We have done some of it, but still it is a long uphill road that we must climb... on our own, full of fights and roadblocks.
How the future looks? D can do anything. We are paving the way to make that certain... She behaves and has the interests as any other girl. With the right resources, she can be a brighter star. SMA has no treatment now, but soon it will have treatment (2-3 years from now) and maybe a cure (within 5). We strongly believe this, and so we strongly believe in planning for short and long run. We must keep on doing what we have been doing... so she is healthy and has minor hospital stays or illnesses. And we must be vigilant and be ready for any emergency, so we can fight the odds.
Where are we heading? Right now we are stuck in Newark... D is under DEO at Newark Public Schools... Her services are all set, far from perfect but at least the team is decent. We hope to eventually move out of here to a place where K can safely attend a PK, and D maybe attend 2-3 times a week. We look forward to M getting an LPN so he can take care of her for one shift, generating appropriate income so we can move forward... We want to move to PA, NY, MA or FL. That is our long-term goal. This year the goals are simple: D attending her PK graduation, D going to Camp at Museum again, D with video-conference for Kindergarten, K saying words and phrases, D getting power wheelchair, D getting exoeskeleton go, D getting laptop with complete control over it, D completely controlling her eyegaze system.
Who has been there to help? D's godfather has been there all along, helping her all the way. SMA families have been there to grant support and advise through the groups at Facebook, SMAspace and SMA Support. Sadly our families have not been too supportive... Only the aunt E, grandmothers E & M, and great-grandmother G have been supporters from far. Other friends send the occasional message or "like" on social media... Last year was sad because we had no visitors at all from family... but D spent 6 weeks going to camp and amazing us all, D's Godfather came for 2 weeks for her birthday, Help Me Howard and the Bussani people donated the van. This year we have at least strangers from a nearby church visiting us... not our church, but still they have welcomed us and are helping us. So this year started being not so bad... even if D was at the hospital for a week (New Year's Eve). We hope that this year many more amazing things happen... maybe an apartment with 3 rooms... maybe a Make A Wish trip after D celebrates her 5th birthday, or at the end of the year...
What are we going to do, to make dreams happen? I have to keep on advocating, reaching out to people, being on top of things for D and K, and for me. I may change my interest at college to Health Informatics, or Special Ed Teacher, and I'm attending specialists to try fixing my diabetes and my neck/arm/trapecius. M should start and complete LPN stuff... And this year should go away as fast as it began. Hopefully by 2013 we can then achieve M getting LPN, me finishing WGU, and being able to move somewhere where he can work as D LPN for one shift, and me being able to work outside the house... while K attends PK after she turns 3, and D start 1st grade actually going to school where she should stay at least until 8th grade... ideally for 12th and graduation (I would like... actually LOVE if she can get to have the same school experience that I had, same peers for all my school years and having 1-3 best friends!).
There is a game plan... or a skeleton of it. I know that what lays ahead of us is a big challenge, but I am not scared of it. We cannot focus on storms ahead, but only on the rainbow above us... the promise that God made of a new day. All that we have is His promise, His blessing, His strength... a a whole road ahead of us that is yellow-bricked and fuels wonder, defiance... and even more HOPE.
It's a rainbow, it;s a rainbow... a beautiful rainbow in the sky...
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