I’ve often lamented the fact that Tom is a morning person. Not only is he a morning person, but he also passed on that revolting trait to our children.
Exhibit A: Alyssa had a two hour delay this morning due to ‘professional development’. Do you think that child used those two hours to catch up on her sleep? Oh no, not on your life! She was up at the usual time of ten minutes after dawn or, as some call it, 6:10. Not one to waste a minute of possible flipping time, she was cartwheeling around the house by 6:30.
Ugh.
And also ugh? Tom usually wakes up happy and when he’s happy, he sings. This used to irritate the shit out of me. Mostly because I’m a horrible person who begrudges other people any sort of happiness if it has to happen before 8am.
But this morning as I headed down the stairs to pack Alyssa’s lunch, I heard Tom in the kitchen, singing. He doesn’t tend to sing songs you’d actually hear on the radio or even songs that have actually been composed by anyone with any sort of musical training. He’s been known to sings numbers or letters, just belting out words to no real tune.
Instead of being irritated by this serenade I stopped and smiled. It hit me that he hasn’t been singing much lately. So it was nice to hear him singing because it meant he was happy.
Yes, my inner bitch kept her mean mouth shut, even in my head. I stood for a minute on the stairs and took it all in. The sounds of Alyssa flipping hands over feet from the living room to the family room, Olivia chirping to Tom about the braid I’d just put in her hair and Tom singing in the background.
We’re happy and sometimes I have to just stand back and bask in it.
A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.
Thursday, December 6, 2012
Wednesday, December 5, 2012
I Know I Can Because I Do
One of the benefits of not getting Olivia’s diagnosis until she was two years old is that I never wondered if I could parent a child with special needs. I never worried that I couldn’t handle it because I was handling it. I had been handling it for over two years before we got the official diagnosis.
By the time we got the 5p- diagnosis, we were actually in a much better place than we’d been during O’s infancy, when we were being told by doctor after doctor that she was fine, she was going to catch up, she was just loud but not sick. No, not sick at all.
I read about parents who worry about being able to care for a sick or special needs child and I want to hug them. I want to tell them that it’ll be okay, even if it isn’t okay.
We do what we have to do. We care for our children as needed.
My cousin, Holly, knew at 18 weeks pregnant that she was going to have a child with medical issues. She found out in her 32nd week of pregnancy that her daughter was going to have even more problems than they’d found at 18 weeks. She went into parenting knowing it was going to be tough, but she also knew she loved her daughter before she was born. She was willing to do whatever it took to give her daughter the best life she could have.
Those of us who don’t find out during pregnancy, aren’t quite as prepared but we manage.
Even though Olivia spent eleven days in the NICU, when she came home, I thought we were good to go. I thought we’d settle into being a family of four. I thought O would be much the same as A had been as a baby. I knew to expect fussiness and sleeplessness. I knew nursing wouldn’t be easy (can we say non-existent for both girls?) and I knew I’d hate pumping with a fiery passion.
But I didn’t know she’d cry pretty much non-stop for the first six months of her life. I didn’t know she’d fail to reach milestone after milestone. I didn’t expect t start therapies when she was a year old. I had no clue that we’d end up with a genetic anomaly as a diagnosis.
But by the time we got that diagnosis, I’d already proven to myself and everyone else that I could do this. I could be Olivia’s mom.
I’d also proven that I could parent a child with delays while still being a pretty damned good mom to my firstborn. I’ll admit, that was a fear of mine when we decided to have a second child. I worried that Alyssa would suffer and that fear came without knowing about the special needs our second child would bring with her.
The thing is, we all do what we have to do. We do it and we usually do it well because it has to be done so we step up. We take a deep breath and we get on with life.
And that’s what I’d tell any parent who has gotten any diagnosis that brings special needs with it. You can do this. You can keep getting up every single day and making it through meals and homework and therapies and doctors’ appointments. You will do it because the other option…well, most of us don’t feel like there is any other option. We do it because we love our children more than we ever imagined possible and we want more for them than doctors predict is possible and we know, WE KNOW, that our children are more than their diagnosis. We know that our children are individuals with personalities that are unique and their abilities are just as unique and they will surprise people every single day of their lives.
We know this because they have surprised us from the start. The capacity to love is a surprise, the fierce need to protect is a surprise. The joy a smile can bring is a surprise. So yes, sometimes, that surprise diagnosis can be devastating but there is so much good waiting around the corner. So keep putting one foot in front of the other until you get to turn that corner.
By the time we got the 5p- diagnosis, we were actually in a much better place than we’d been during O’s infancy, when we were being told by doctor after doctor that she was fine, she was going to catch up, she was just loud but not sick. No, not sick at all.
I read about parents who worry about being able to care for a sick or special needs child and I want to hug them. I want to tell them that it’ll be okay, even if it isn’t okay.
We do what we have to do. We care for our children as needed.
My cousin, Holly, knew at 18 weeks pregnant that she was going to have a child with medical issues. She found out in her 32nd week of pregnancy that her daughter was going to have even more problems than they’d found at 18 weeks. She went into parenting knowing it was going to be tough, but she also knew she loved her daughter before she was born. She was willing to do whatever it took to give her daughter the best life she could have.
Those of us who don’t find out during pregnancy, aren’t quite as prepared but we manage.
Even though Olivia spent eleven days in the NICU, when she came home, I thought we were good to go. I thought we’d settle into being a family of four. I thought O would be much the same as A had been as a baby. I knew to expect fussiness and sleeplessness. I knew nursing wouldn’t be easy (can we say non-existent for both girls?) and I knew I’d hate pumping with a fiery passion.
But I didn’t know she’d cry pretty much non-stop for the first six months of her life. I didn’t know she’d fail to reach milestone after milestone. I didn’t expect t start therapies when she was a year old. I had no clue that we’d end up with a genetic anomaly as a diagnosis.
But by the time we got that diagnosis, I’d already proven to myself and everyone else that I could do this. I could be Olivia’s mom.
I’d also proven that I could parent a child with delays while still being a pretty damned good mom to my firstborn. I’ll admit, that was a fear of mine when we decided to have a second child. I worried that Alyssa would suffer and that fear came without knowing about the special needs our second child would bring with her.
The thing is, we all do what we have to do. We do it and we usually do it well because it has to be done so we step up. We take a deep breath and we get on with life.
And that’s what I’d tell any parent who has gotten any diagnosis that brings special needs with it. You can do this. You can keep getting up every single day and making it through meals and homework and therapies and doctors’ appointments. You will do it because the other option…well, most of us don’t feel like there is any other option. We do it because we love our children more than we ever imagined possible and we want more for them than doctors predict is possible and we know, WE KNOW, that our children are more than their diagnosis. We know that our children are individuals with personalities that are unique and their abilities are just as unique and they will surprise people every single day of their lives.
We know this because they have surprised us from the start. The capacity to love is a surprise, the fierce need to protect is a surprise. The joy a smile can bring is a surprise. So yes, sometimes, that surprise diagnosis can be devastating but there is so much good waiting around the corner. So keep putting one foot in front of the other until you get to turn that corner.
Tuesday, December 4, 2012
Busy
We’re not. Busy, that is. At least, not compared to others out there who have almost constant activities, places to be, things to do.
Alyssa has gymnastics on Thursdays. It runs from 6:15 to 7:15.
That’s it for our weekly scheduled activities.
But each evening, when we walk in the door at about 5:45, I feel like we’re sprinting toward bedtime. It feels like there is just enough time to make dinner, eat dinner, clean up after dinner, maybe bathe a child or two and suddenly, it’s 7:30 and time to be reading to Olivia and then scratching her into slumber.
Once O’s asleep, Alyssa attaches herself to my side for at least a half hour, soaking me in. And I soak her in too. I know these moments are numbered, these times when she wants to be next to me, touching me, laughing with me, watching inane television with me.
When Alyssa finally drops off, I have about ten minutes until it’s time for me to go to sleep too. Though I usually turn those ten minutes into an hour because, hello, alone, I’m ALL ALONE. Have I mentioned that I need alone time to recharge so that I can give my all to those around me who want all of me? Yes? It cannot be repeated often enough.
Our one truly busy day, Thursday is just hectic enough that I don’t relish the idea of adding more days like that to the week. I get of work at 4:30, I drive directly to my mom’s, 18 miles away, where the girls are hanging out after school. When I arrive, Alyssa takes that as her cue to change into her gymnastics clothes. I find a ponytail holder because I know she’ll forget. I find Olivia’s shoes and socks (she takes them off the instant she walks in the door at my mom’s. She says her feet are sweaty and she hates sweaty feet.) and make her let me put them on her. I gather coats and backpacks.
We are usually pulling out of the driveway 20 minutes after I get there and head back to town.
Olivia and I wait in uncomfortable chairs for an hour while Alyssa flips and bends and swings and balances. She loves the class. And I love that she loves it. But the waiting? Boring. I’ve already let her know that Olivia and I might have to start making mini trips…somewhere during that hour. Just because I get tired of trying to entertain O. I know, I could leave her home with Tom but she doesn’t’ want to stay home with him and any working mom will understand that I’m already away from my girls 40+ hours a week, even one more hour (two if you count travel time) feels like too much.
So, we’re not busy even though it often feels like we are. Or perhaps busyness is in the eye of the beholder. What seems like busy to some feels relaxed and easy to others and what seems frantic and insane to one person will just feel like everyday busyness to another.
Alyssa has gymnastics on Thursdays. It runs from 6:15 to 7:15.
That’s it for our weekly scheduled activities.
But each evening, when we walk in the door at about 5:45, I feel like we’re sprinting toward bedtime. It feels like there is just enough time to make dinner, eat dinner, clean up after dinner, maybe bathe a child or two and suddenly, it’s 7:30 and time to be reading to Olivia and then scratching her into slumber.
Once O’s asleep, Alyssa attaches herself to my side for at least a half hour, soaking me in. And I soak her in too. I know these moments are numbered, these times when she wants to be next to me, touching me, laughing with me, watching inane television with me.
When Alyssa finally drops off, I have about ten minutes until it’s time for me to go to sleep too. Though I usually turn those ten minutes into an hour because, hello, alone, I’m ALL ALONE. Have I mentioned that I need alone time to recharge so that I can give my all to those around me who want all of me? Yes? It cannot be repeated often enough.
Our one truly busy day, Thursday is just hectic enough that I don’t relish the idea of adding more days like that to the week. I get of work at 4:30, I drive directly to my mom’s, 18 miles away, where the girls are hanging out after school. When I arrive, Alyssa takes that as her cue to change into her gymnastics clothes. I find a ponytail holder because I know she’ll forget. I find Olivia’s shoes and socks (she takes them off the instant she walks in the door at my mom’s. She says her feet are sweaty and she hates sweaty feet.) and make her let me put them on her. I gather coats and backpacks.
We are usually pulling out of the driveway 20 minutes after I get there and head back to town.
Olivia and I wait in uncomfortable chairs for an hour while Alyssa flips and bends and swings and balances. She loves the class. And I love that she loves it. But the waiting? Boring. I’ve already let her know that Olivia and I might have to start making mini trips…somewhere during that hour. Just because I get tired of trying to entertain O. I know, I could leave her home with Tom but she doesn’t’ want to stay home with him and any working mom will understand that I’m already away from my girls 40+ hours a week, even one more hour (two if you count travel time) feels like too much.
So, we’re not busy even though it often feels like we are. Or perhaps busyness is in the eye of the beholder. What seems like busy to some feels relaxed and easy to others and what seems frantic and insane to one person will just feel like everyday busyness to another.
Monday, December 3, 2012
Fogged In
I had to leave home early this morning to get to work early because of inventory. Ahh, counting isn’t something this former English major enjoys. Alas, we do what the boss tells us, right?
When I woke up at 2am because of Olivia’s hard noggin digging into my spine, I glanced out the bathroom window and noted that a bit of fog had rolled in.
I went back to bed (one that didn’t already hold Olivia and her bulbous head) and lay there, wide awake. I was worried I wouldn’t hear my alarm. Duh, I always hear the stupid alarm. Except when I don’t, right?
I finally fell back to sleep only to be woken up by Olivia, who’d left the bed I’d abandoned her in and traveled across the room to find me. She was itchy, she said. It was 4am.
I muttered that I’d scratch her for a minute but then we were going back to sleep.
The alarm went off at 5. I kissed her and told her I was going to go use the bathroom, that she should try to go back to sleep because I’d be right back.
I wasn’t right back. But she did go back to sleep. Woo hoo!
I looked out the bathroom window again and saw that the fog had thickened.
I was ready to walk out the door at 6am. Tom reminded me to use the fog lights on my car.
I’d gone half a mile when the school’s automated messaging system called to let us know that school was delayed two hours due to the weather.
Two hours later, the school called again. This time to let us know that school was being cancelled due to the fog.
Yes, the fog was that dense.
I was reminded once again how lucky we are that Tom works from home. I didn’t have to worry about childcare or how to get the girls to that childcare. I know they’re home, safe and sound, probably wearing gymnastics suits and watching season seven of Bewitched.
These are the moments when I’m reminded of how fortunate we really are.
When I woke up at 2am because of Olivia’s hard noggin digging into my spine, I glanced out the bathroom window and noted that a bit of fog had rolled in.
I went back to bed (one that didn’t already hold Olivia and her bulbous head) and lay there, wide awake. I was worried I wouldn’t hear my alarm. Duh, I always hear the stupid alarm. Except when I don’t, right?
I finally fell back to sleep only to be woken up by Olivia, who’d left the bed I’d abandoned her in and traveled across the room to find me. She was itchy, she said. It was 4am.
I muttered that I’d scratch her for a minute but then we were going back to sleep.
The alarm went off at 5. I kissed her and told her I was going to go use the bathroom, that she should try to go back to sleep because I’d be right back.
I wasn’t right back. But she did go back to sleep. Woo hoo!
I looked out the bathroom window again and saw that the fog had thickened.
I was ready to walk out the door at 6am. Tom reminded me to use the fog lights on my car.
I’d gone half a mile when the school’s automated messaging system called to let us know that school was delayed two hours due to the weather.
Two hours later, the school called again. This time to let us know that school was being cancelled due to the fog.
Yes, the fog was that dense.
I was reminded once again how lucky we are that Tom works from home. I didn’t have to worry about childcare or how to get the girls to that childcare. I know they’re home, safe and sound, probably wearing gymnastics suits and watching season seven of Bewitched.
These are the moments when I’m reminded of how fortunate we really are.
Saturday, December 1, 2012
Distracted
This morning, as with every Saturday morning, Tom came to wake me up before 7:00 to let me know he was leaving to go auctioning or whatever you call it when someone goes to an auction to look for things to buy so he can turn around and sell them.
Ahem. Yes, he came to tell me he was leaving. Thought honestly, I can say that I'd be pretty aware of his absence if I came downstairs at 8:00 with the girls trailing behind me like a couple of ducklings even without his announcing it to me in my slumbering state.
Though he does this every Saturday, this morning he had another reason to wake me to tell me he was leaving.
He let me know there was a package on the kitchen table that I might need to take to the post office for him if he didn't get back from his auction in time to do it himself.
This reminded me of eight days ago when I called him as he was driving to town to pick up some parts for the van. I wanted to know if he could go to another store about three blocks away from where he was going to be and get some lights for the Christmas tree.
Alas, I asked too much. He really, truly couldn't spare the time to do that. He needed to get to Auto Zone and back out and back home in record time to work on that van.
But today, since I was probably going to town anyway, driving four miles one way out of the way wouldn't be too much of an imposition, would it?
Oh. I think I might be a little annoyed by the entire situation. Huh.
As the girls and I drove to the post office, my phone rang. It was the sender of the package. He said he was leaving the auction area and would be home, probably, with just enough time to get the package to the post office. Where was I?
I informed him that the package was already en route, so don't rush and do watch for deer.
I started to park right outside the post office but noticed a sign that said that spot was reserved for postal workers.
So I pulled away, telling Tom that I needed to drive around the block and find another parking spot. He informed me that those spots are actually only reserved at 7am, for loading.
He's right.
I then said, "Oh, I could have parked in the slanted spots in front of the post office instead of going around the block to park in the parallel spots."
He laughed and said, "Yes, you could have."
I muttered, "Well, I must be a little distracted, since I'm driving while ON THE PHONE."
He got the hint. I love yous were exchanged and we hung up.
And he made up for much of the irritation this afternoon by putting up the outside Christmas lights while I vacuumed my disgusting car.
It all evens out in the end. Pretty much.
Ahem. Yes, he came to tell me he was leaving. Thought honestly, I can say that I'd be pretty aware of his absence if I came downstairs at 8:00 with the girls trailing behind me like a couple of ducklings even without his announcing it to me in my slumbering state.
Though he does this every Saturday, this morning he had another reason to wake me to tell me he was leaving.
He let me know there was a package on the kitchen table that I might need to take to the post office for him if he didn't get back from his auction in time to do it himself.
This reminded me of eight days ago when I called him as he was driving to town to pick up some parts for the van. I wanted to know if he could go to another store about three blocks away from where he was going to be and get some lights for the Christmas tree.
Alas, I asked too much. He really, truly couldn't spare the time to do that. He needed to get to Auto Zone and back out and back home in record time to work on that van.
But today, since I was probably going to town anyway, driving four miles one way out of the way wouldn't be too much of an imposition, would it?
Oh. I think I might be a little annoyed by the entire situation. Huh.
As the girls and I drove to the post office, my phone rang. It was the sender of the package. He said he was leaving the auction area and would be home, probably, with just enough time to get the package to the post office. Where was I?
I informed him that the package was already en route, so don't rush and do watch for deer.
I started to park right outside the post office but noticed a sign that said that spot was reserved for postal workers.
So I pulled away, telling Tom that I needed to drive around the block and find another parking spot. He informed me that those spots are actually only reserved at 7am, for loading.
He's right.
I then said, "Oh, I could have parked in the slanted spots in front of the post office instead of going around the block to park in the parallel spots."
He laughed and said, "Yes, you could have."
I muttered, "Well, I must be a little distracted, since I'm driving while ON THE PHONE."
He got the hint. I love yous were exchanged and we hung up.
And he made up for much of the irritation this afternoon by putting up the outside Christmas lights while I vacuumed my disgusting car.
It all evens out in the end. Pretty much.
Friday, November 30, 2012
So Much Better
Somehow in the past month or so, I’ve come to a place of acceptance. I’ve grown more comfortable in my own skin.
Just this morning, Olivia announced to everyone in the bathroom, “Mom, you have big bosoms.”
Why yes, I do have to shower and dress with an audience. Doesn’t every mother?
I just smiled and thanked her for noticing.
She wasn’t done, though. She also noted, “You have a big belly too.”
Again, thank you for noticing and letting me know, just in case I wasn’t aware.
Which I am, by the way. I know how big my bosom and belly are. But you know what? I’m not all that worried about it these days. Yes, I hate being heavy but I also know what needs to be done to fix it and if I’m not at a point where I can do the things that need to be done, well, so be it.
And let me tell you…this acceptance, this self-forgiveness? It’s gone a long way toward making me a better mother and wife. I don’t take every single thing Tom says and analyze the shit out of it. I don’t wonder why he said something with just the exact words he did. I don’t wonder about any hidden meanings. I figure if he has something to say, he’ll say it. He’s a guy. They usually don’t hint around.
My mothering has come so far in such a short time. Yes, I still get irritable. I still get grouchy. But when it happens, I apologize, I hug the girls and I let it go. I’m grateful that they do too.
My patience seems to be stronger and lasts longer.
You know the old saying, “If mama isn’t happy, no one is happy.” I think it’s very, very true. I’m grateful that these days I’m pretty happy which makes my entire family happy. I’m still learning that my own happiness starts with me but I’m getting there and that’s all I can ask of myself.
Just this morning, Olivia announced to everyone in the bathroom, “Mom, you have big bosoms.”
Why yes, I do have to shower and dress with an audience. Doesn’t every mother?
I just smiled and thanked her for noticing.
She wasn’t done, though. She also noted, “You have a big belly too.”
Again, thank you for noticing and letting me know, just in case I wasn’t aware.
Which I am, by the way. I know how big my bosom and belly are. But you know what? I’m not all that worried about it these days. Yes, I hate being heavy but I also know what needs to be done to fix it and if I’m not at a point where I can do the things that need to be done, well, so be it.
And let me tell you…this acceptance, this self-forgiveness? It’s gone a long way toward making me a better mother and wife. I don’t take every single thing Tom says and analyze the shit out of it. I don’t wonder why he said something with just the exact words he did. I don’t wonder about any hidden meanings. I figure if he has something to say, he’ll say it. He’s a guy. They usually don’t hint around.
My mothering has come so far in such a short time. Yes, I still get irritable. I still get grouchy. But when it happens, I apologize, I hug the girls and I let it go. I’m grateful that they do too.
My patience seems to be stronger and lasts longer.
You know the old saying, “If mama isn’t happy, no one is happy.” I think it’s very, very true. I’m grateful that these days I’m pretty happy which makes my entire family happy. I’m still learning that my own happiness starts with me but I’m getting there and that’s all I can ask of myself.
Thursday, November 29, 2012
Basking in Her Affection
I’m part of a couple of groups on Facebook that were created by and for parents/family members of children with 5p- syndrome.
I love the perspective these groups give me. I love that parents and caregivers can share celebrations and concerns about our kids, get advice or just virtual hugs (though, honestly? Someone typing ‘hugs’ is just short of irritating, just saying) when things are tough.
One parent recently asked about affection. This parent’s child refuses hugs and kisses. The parent wanted to know if any other parents dealt with this.
We definitely do not have this problem with Olivia. She’s one of the most affectionate kids I’ve ever met. In fact, there are times when I have heard myself yell, “Stop kissing your sister!”
I know. Such a stupid thing to have to yell but there you have it. However, I don’t think Olivia is kissing her sister to be affectionate so much as she’s doing it to annoy her sister.
But aside from that, Olivia loves snuggles, hugs, kisses, back rubs, arm scratches. Touch is definitely one of her languages of love.
Another thing I’ve learned by being a part of these groups is that autism is often an added ‘bonus’ to kids with 5p-. Bummer, huh? I mean, talk about adding up the challenges. 5p- already challenges an individual’s ability to communicate. Add in a touch of autism and damn.
So far, Olivia doesn’t show any signs of autism. We do have it on her IEP because it gets her better services. Being aware of the possibility is part of the battle, though.
We shower Olivia with affection and she gives it back just as much. Sometimes, if you ask Alyssa, Olivia is too affectionate. I realize, though, how lucky we are that she is able to show us how much she loves us in so many ways. Not everyone is that lucky and that makes me very sad.
I love the perspective these groups give me. I love that parents and caregivers can share celebrations and concerns about our kids, get advice or just virtual hugs (though, honestly? Someone typing ‘hugs’ is just short of irritating, just saying) when things are tough.
One parent recently asked about affection. This parent’s child refuses hugs and kisses. The parent wanted to know if any other parents dealt with this.
We definitely do not have this problem with Olivia. She’s one of the most affectionate kids I’ve ever met. In fact, there are times when I have heard myself yell, “Stop kissing your sister!”
I know. Such a stupid thing to have to yell but there you have it. However, I don’t think Olivia is kissing her sister to be affectionate so much as she’s doing it to annoy her sister.
But aside from that, Olivia loves snuggles, hugs, kisses, back rubs, arm scratches. Touch is definitely one of her languages of love.
Another thing I’ve learned by being a part of these groups is that autism is often an added ‘bonus’ to kids with 5p-. Bummer, huh? I mean, talk about adding up the challenges. 5p- already challenges an individual’s ability to communicate. Add in a touch of autism and damn.
So far, Olivia doesn’t show any signs of autism. We do have it on her IEP because it gets her better services. Being aware of the possibility is part of the battle, though.
We shower Olivia with affection and she gives it back just as much. Sometimes, if you ask Alyssa, Olivia is too affectionate. I realize, though, how lucky we are that she is able to show us how much she loves us in so many ways. Not everyone is that lucky and that makes me very sad.
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