“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.
I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.
But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.
But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular. Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
Indeed.
My Side of Typical
Thursday, March 21, 2013
Wednesday, March 20, 2013
Drained
Some days I just can't do it. I'm not sure why. Either I'm exhausted, or not feeling well, or stressed more than usual, or overwhelved, or simply drained, or...or...or. I'm not sure the reason matters, but somedays I just can't be the mom I should be. I want to lock myself in my bedroom and ignore the world outside. It doesn't happen very often. But once in a while I just need time to decompress, refuel, a mental health day off. Parenting a special needs child is demanding, a 24 7 job. And every once in a while I need a few hours off...or maybe a whole day.
When Miracle Boy was 6 months old, his dad left. There is a whole long story there, but it has nothing to do with this so we'll leave it in the past. For the next 7 years, I was a single parent. And there were times when that was really tough. But honestly, it was nothing compared to parenting a special needs child. I simply cannot imagine being a single parent of a special needs child. I'm so thankful for all the support I have.
Even with all the great support I have, there are some days I just can't do it. I can't repeat my part of the same script for the 82nd time that day, or watch the same airplane video over and over and over and over.... Or, change the pull ups on my 7 year old. Some days I just need a break.
And I try not to feel too guilty for it.
When Miracle Boy was 6 months old, his dad left. There is a whole long story there, but it has nothing to do with this so we'll leave it in the past. For the next 7 years, I was a single parent. And there were times when that was really tough. But honestly, it was nothing compared to parenting a special needs child. I simply cannot imagine being a single parent of a special needs child. I'm so thankful for all the support I have.
Even with all the great support I have, there are some days I just can't do it. I can't repeat my part of the same script for the 82nd time that day, or watch the same airplane video over and over and over and over.... Or, change the pull ups on my 7 year old. Some days I just need a break.
And I try not to feel too guilty for it.
Thursday, March 7, 2013
Careful What You Wish For
When Bambam was 2.5 years old and not uttering a single work yet, I had but one single wish. If he could just talk. If he could just tell me what he needed, wanted, liked, hated, was scared of, etc our lives would be so much easier. The endless meltdowns would slow down, possibly end. It was to me the answer to everything.
With hours and hours of therapy and patience, he did eventually start speaking. And has not shut up since. I have never been around a child with such severe verbal diarrhea. That child is never quiet. He talks incessantly, and usually about one topic that he perseverates on day after day after day for weeks. The topic may change every few weeks, but after 3-4 weeks of hearing about the same biplane, or pizza delivery man, or bulldozer I'm about ready to use the pirate bullet on myself. How much is one parent expected to take?
Last weekend Miracle Boy was gone. And Bambam was obsessing over this fact. He is after all Miracle Boy's shadow. Sometimes I feel bad for that teenager as Bambam follows him all around the house. So starting at 6:30 Sunday morning Bambam started with "When brother home?" or "when brother time?" or "brother home 10 minutes?" or "brother home an hour?" or "brother home yet?" or ..... you get the idea. Every 5 minutes there was some version of this question. And he doesn't just ask the question, he has to poke you too, just to make sure he has your attention. Imagine: poke, poke, poke every 5 minutes. And he does not discriminate on where he pokes you, arm, leg, stomach, back, boob. Poke, poke poke, "brother home 10 minutes?" over and over and over again.
By 10:00 am I had locked my self in my bathroom. I know, mother of the year award. But seriously, if he poked me one more time I was going to loose it. Poke, poke, poke. If you don't think that is irritating, you are a saint.
I love that he can talk and tell us what he needs, when noises are too loud, that he likes the garbage truck, that the neighbor's dog is his friend. I love the things he says, he's funny without trying. Having him tell me that he had lunch with TJ and played with Ben at recess is beautiful to me. He's worked so long and hard so he can tell me. But silence, just a few minutes of silence, well they say its golden. I'm not sure, I don't think I've heard it in oh 4 years or so. Perhaps I should borrow his noise cancelling headphones.
With hours and hours of therapy and patience, he did eventually start speaking. And has not shut up since. I have never been around a child with such severe verbal diarrhea. That child is never quiet. He talks incessantly, and usually about one topic that he perseverates on day after day after day for weeks. The topic may change every few weeks, but after 3-4 weeks of hearing about the same biplane, or pizza delivery man, or bulldozer I'm about ready to use the pirate bullet on myself. How much is one parent expected to take?
Last weekend Miracle Boy was gone. And Bambam was obsessing over this fact. He is after all Miracle Boy's shadow. Sometimes I feel bad for that teenager as Bambam follows him all around the house. So starting at 6:30 Sunday morning Bambam started with "When brother home?" or "when brother time?" or "brother home 10 minutes?" or "brother home an hour?" or "brother home yet?" or ..... you get the idea. Every 5 minutes there was some version of this question. And he doesn't just ask the question, he has to poke you too, just to make sure he has your attention. Imagine: poke, poke, poke every 5 minutes. And he does not discriminate on where he pokes you, arm, leg, stomach, back, boob. Poke, poke poke, "brother home 10 minutes?" over and over and over again.
By 10:00 am I had locked my self in my bathroom. I know, mother of the year award. But seriously, if he poked me one more time I was going to loose it. Poke, poke, poke. If you don't think that is irritating, you are a saint.
I love that he can talk and tell us what he needs, when noises are too loud, that he likes the garbage truck, that the neighbor's dog is his friend. I love the things he says, he's funny without trying. Having him tell me that he had lunch with TJ and played with Ben at recess is beautiful to me. He's worked so long and hard so he can tell me. But silence, just a few minutes of silence, well they say its golden. I'm not sure, I don't think I've heard it in oh 4 years or so. Perhaps I should borrow his noise cancelling headphones.
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