...........seems like every time I sit to write, I am just as behind with my blog as I was the last time. The blog is two-fold. 1. to capture memories 2. to share my heart. I "write" in my head everyday... in fact, I wish they had a "record" button on my eyes and my thoughts so I could play back moments I see and thoughts I have. I think technology is getting there, just give it a few years.
All that to say, sigh...............I am emotionally a bit unstable. As I continue to journey through this new life, I realize that I feel pressure to not talk about Sanfilippo as much with people in my life. I am a broken record. How to you express, over and over and over, the same-but-different grief? No one can fully understand what it is like to be in Arizona on vacation, looking at Brooklyn, my precious 16 month little curly-haired ray of sunshine, thinking how I am so thrilled to be absorbing her coming into her own.....and then get a text that, yet another, MPS child is in heaven. To look at the video in memory of "another angel who got his wings" and see the face of Jayden....
It is too much to bear.
To live in death and life all the time. I find myself wanting to ignore Sanfilippo only to have it creep up on me like a guy in a haunted house that doesn't say "boo" but just gives you that creepy vibe that leaves you feeling like someone is watching you and following you and at some very moment, you may be his next victim....that waiting. Yuck. I don't want my life to ever be waiting for the day I loose my children. But, how do I do this when all the MPS kids around me are dying? There has been 4 so far this year that I have known of and I am sure there are more. That is why I avoid the forums because it hurts so bad. I also know that I can't and don't really want to ignore it I just want to learn how to balance it. Even as I write that, I can hear God laughing. I am soooo not in control, yet I want to get a handle on it. I hate feeling out of control. I can control so much of this, I think to myself. I can control the therapy the food , the medicine, the fundraising, the day to day stuff, but every time I try to juggle....I sense one more ball is dropped as 3 are thrown in.
Oprah has parents of dead children speaking, there are websites that I am looking at that deal with wheelchairs, strollers, special needs equipment, safe beds, and foundations of other families that have lost children. In the same moment, I am supposed to be joyful. I am supposed to embrace the moments....And I am.....but I still get annoyed with my kids. I still want to shake them sometimes for drawing on the couch with marker, for spilling 4-8 times a day, for always making messes, for not sitting still, for not following one little, simple direction. For pulling my hair, kicking me in the stomach, physically draining every pound I have....only to crack a smile and giggle that just melts me and makes me feel guilty for taking out my frustration of waht Sanfilippo is robbing my children of on them. I know that God is in control and I say that a lot to remind myself I am not, but....having an eternal perspective only goes so far in the day-to-day. I make one moment successful by remaining in God.. and 30 seconds later, I am back in the world!
I realized in the airplane that God has a birds eye view that I will never have. I only see what is in front of me and he sees from above. Oh, how my perspective changes when I am in the air, looking down at a mountain vs. standing at the base of one! No wonder He says he can move mountains!! He has a different perspective. Looking at one from 30,000 feet I feel like I can pinch my two little fingers together, grab one, and plop it down 40 miles west too!
Lately, I feel the challenges/testing that God is giving me is a constant, dull pain. Ever had that? Where there are times you can ignore it becuase you are busy, but as soon as you slow down long enough to notice... it keeps reappearing, as you beg for it to go away? It feels like all the little things, the minor irritations are driving me to crack a bit. I mean, it is like when my "sadness" of sanfilippo is flaring like athletes foot and I try to pee on it, only to have splashes of pee end up all over my shower! (gross...but I hear it works :) I mean, I go to wal-mart, see a special needs boys running around failing his arms and yelling while everyone stares. I am "triggered" immediately. The internal dialogue begins:
Do I look? Do I help? Is he ok? Where is mom? Did he escape from her view? Do I smile? Oh, that is going to be Jayden in a few years....if he is mobile. No. Don't go there. Yeah, but you know it's true....mighty to save, blah blah..... Oh, my precious boy. Soap. Diapers. I hate that I can't find size 6 diapers in LUVS. Yup. He is still in diapers and now I am going to have to contact a medical supply store and order them. Crap my phone is dying. Augh. they are out if everything I need. Ok. Pull yourself together. Ooohh...a cute shirt. No. Milk, yogurt, ...that boy is still running around. Get up to the register, unload my hours worth of shopping. Lady scans first item as I dig through my purse, flaming that now I have to go to Jewel and Target to get the stuff wal-mart didn't' have. No money. No wallet. Left it at home. Leave the store almost in tears empty handed and back to square one. Sigh.........
You get it....and it feels like it has been every day. I know that 10% is my circumstance and 90% is my attitude in response to it. But I struggle controling my anger and frustration. So, I cussed out God (not really) the entire way home. And you know what, he met me in it. Nothing changed. I just felt not alone. I am so sick of testing, changing, obedience, stretching. Haven't I been stretched enough?!
It is like I live in two worlds. I have great friends, great family, great kids, great marriage, great home, great church, great job, every material thing I need. Clean water, heat, a bed. Food, love, and help. Yet my frustration level is like 0 to 60 when a minor irritation occurs. The straw that breaks the camels back. There is so much I want to be doing (research, therapy with my kids, getting the best stuff for them, studying Jayden's IEP stuff, talking with other parents, cleaning the house, feeding my family dinner, reading, praying, growing, blogging, fundraising, mission trips, helping people, thank you notes, gifts for people that are not late) but it is just piling up faster than I can take it down.
I have no "bow" to tie this blog entry ending up. I am just messy. And, although it sucks, I am awkwardly ok with it being so.
