Life Is Sweet

Life is hard, sometimes. In big ways, and in small.

My son is going to graduate from High School soon. I can't slow it down, and I can't get a do-over for anything I might have screwed up along the way.

He's not going away to college. And I suppose I could get all bogged down in the idea that he's not doing something that other kids are, but you know, he's going to graduate. That's not true for all High School Seniors.

And there may be some who don't think that I have any right to complain about that. Because maybe their kids aren't graduating. But hey, at least they're healthy. They've got that.

Well, unless they don't. And those parents could easily look at the parents of a kid who isn't graduating and think that they have nothing to complain about.

Of course, some kids haven't made it to their senior year. For one reason or another, they're not here anymore, and their grieving parents wish they had their child, even unwell, to hold.

We've all got something to worry about, be nervous about, or be afraid of.

We've all also got something to rejoice over, be thankful for, and appreciate.

I read a blog recently of a mother who is skipping her child's graduation. I don't judge her choice. I can't say what the right thing is for her and her child. I just know that I read a lot in the comments that was very judgemental about "normal" parents and all the things they're worried about.

Not that I've never been guilty of this. There have been times it's been hard for me to watch my friends children doing things I don't know if mine ever will. But I can not get bogged down in the "whose pain is worse" game. No one ever wins at that, and you just feel dirty for having played it.

Life is hard. But none of us has a monopoly on hardship. And it's not always hard. We take turns with the hardship, like a horrific game of hot potato, passing it from one to another.

None of us will get to escape catching it at some point.

But life is also sweet, and full of unexpected joys. Liam asked me a whole question today, a whole sentence, with the word please at the end. My baby who I wasn't sure would make it, now asks me questions. He says "please" and "thank you." Sometimes he even tells me he loves me.

Like Natalie Merchant says, "I tell you, life is sweet, there's so much more, be grateful."

I have a lot to be grateful for, and I think I will be a much happier person if I live from that place, than one of jealousy and bitterness. And that's the only gift the "whose pain is worse" game has ever given me.

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The Loss Perspective

I was talking to a friend recently, about moving from the first year of grief to the second.

It's a weird journey from start to forever (since with grief there's never really a finish).

The first days are acute. Everything feels like it's happening in slow motion. It hurts more than you can fathom. But at least you're busy.

There are plans to be made and things to be done. There are arrangements.

People come out of the woodwork to support you, and offer their love and concern.

It hurts, but for a time, you can see that your loss means something to others. That they too, see the rend in the universe that has been made by the loss of this person you loved so much. It holds you up in those early days.

But then, everything that can be done, is done. People return to their regular lives, and suddenly you have to navigate this world that has not been made right for you.

I remember being shocked that I had to do things like pay the electrical bill. My daughter was dead. How could bills be important?

Then there's the first year, which I refer to as "the year of firsts". First holidays and milestones without them. The pain is still raw and fresh, and people understand as you touch each meaningful date and acknowledge your hurt.

But I think the real work comes with the second year and beyond. Because that's when you get down to the real work of creating a life without someone that was supposed to be there.

I had a whole life with Sarah that I haven't seen outside of dreams. And while I don't live in the urgency that is new grief, it's now a weight that I carry all the time.

It's a different kind of work, grieving. It's not even that it's always sad. It just...is.  

Truly, though, I think most of you know, I'm a happy person by nature. I love people and I love life. I'm not swimming around in my grief after almost ten years. But I will never stop missing her, either. I will never get to stop carrying on with a life that was supposed to include her. So, it's just always going to be there, that weight of her loss.

So, I was having this moment of annoyance at a mom who was complaining about her child doing something normal and wonderful. It's been happening a lot lately, actually. People having the totally normal feeling that their kids are growing up too fast, and couldn't they just slow down a little bit?

It's a feeling I've had.

But right now, I'm watching Liam learn how to use a spoon. He's almost 3 1/2 and he can't use a spoon. He can't regulate how fast he eats. He can't tear food with his front teeth. These are all skills that most kids get at about 18 months.

Of course, he's also getting more words all the time, and walking up the stairs (instead of crawling), and gaining other great skills. There's a lot to be excited about.

And still, when I hear mom's complain, I can't help but think that they should be grateful that their kids are doing those things. Because mine isn't. Or won't. Or won't soon.

But then, I know that there's nothing wrong with how they're feeling. It's normal. And it's the same thing that people who've lost could think about me. How can I complain that Liam's not doing certain things yet?

He's alive.

He could.

I sometimes have to remind myself that we all have struggles, and sometimes the hardest struggles we face are to remember to see things from a perspective other than our own, and to choose gratitude for our circumstances.

I lost Sarah.

But I get to keep Liam.

One child can never replace another, but I have so much to be thankful for. I have to hold on to that gratitude with both hands and squeeze once in a while.

You should too.

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What Is Wrong With People?

This is a disability meme I can get behind.

A friend of mine asked me to write a blog post.

I can't tell you how much I appreciate getting to write a blog post where I don't have to come up with an idea.

That's genius, people. In fact, if you have ideas, don't be afraid to throw them out there. I totally take requests.

Anyhow, she's been frustrated an hurt by meme's she's seen that poke fun at kids with disabilities. Some of them even use images of actual children.

So, someone has posted pictures of a child they love, only to have it taken and used to create an internet meme that pokes fun of them.

It's bullying at it's lowest.

I feel this personally, since I'm a "Special Needs" mom (which I only put in quotes because really, I'm a mom period, but have to make the distinction of being a mom who has kids with various and sundry diagnoses).

Since having kids with Special Needs, I've become part of a larger community of really incredible people. Strong parents, and strong kids.

Between us, our kids cover quite a range. Unfortunately, so do the memes.

This is one of the least offensive Autism memes out there:

How about one of the many that target Tourette's, but don't actually understand it :

I'll be honest, I can't even bear to print the ones that poke fun at kids with Achondroplasia (Dwarfism) or Down Syndrome. They literally hurt my heart.

So, I have to ask the question: What is wrong with people?

Autism is a real diagnosis that presents challenges for those who live with it. And for those who are severely affected, it presents incredible challenges for their whole families, the likes of which idiots making these kinds of memes can't even imagine.

Tourette's Syndrome is a neurological condition that causes physical and vocal tics, and does not cause all sufferers to shout random obscenities. I'd love to see the assholes who write these memes try to live that way for a day. I doubt it would be so funny after that. 

I have mentioned at least once before that my friend has had people on the street take pictures of her 3 year old son with Achondroplasia. I can't imagine the kind of callous disrespect necessary for someone to do that. And I can't imagine what it would be like for someone to think they had the right to stop and take my child's picture. Little People are not just curiosities.

My friend has not yet been charged with assault. Which I'm pretty sure means she's a better person than I am.

One of my oldest and dearest friends has a child with Down Syndrome. And I have a child who is developmentally challenged. I have watched as our kids struggled, and worked tirelessly to accomplish things that come so easily to other people. To see people treat their challenges as something to ridicule, as opposed to seeing how much they've accomplished and how much cause we have to celebrate...I'll be honest. It's hurtful.

These kids work twice as hard as everyone else, to get half as far, and yet they're not bitter and angry. 

They're not unkind. 

And I'll throw in another pet peeve of mine: The R-Word memes. I was going to post one of the many that include the word, but they honestly made me too angry.

So, let me explain, simply when it's okay to use the R-Word. Unless you are using the word for some kind of scientific term paper in which you are talking about the growth of something being retarded by the application of something else, refer to this:

Because the thing is, people who are developmentally delayed or challenged, they're not stupid. They're not lazy. They have their own skills, they want to learn, and they work harder than almost anyone else. And to try to insult someone by comparing them to these incredibly special people, is insulting to those with the disability, who deserve to be in better comparative company. 

The people who make these kinds of memes need to stop trying to cover up their own lack of wit or intelligence by highlighting their own ignorance. 

I wonder how much less funny they would find their own memes, if they had a child who suffered from one of these conditions. 

Really, I feel no reason to wallow in self pity of any kind. 

My kids are here. They're growing, learning, and thriving. And while I find these memes upsetting, and I hope people know the truth about kids like mine, I also will not spend a great deal of time and energy on the people who create them.

After all, I know they won't stop. These kinds of people rarely think beyond their own immediate self-interest, and would say that I'm just being sensitive and should get over it. 

I do take some comfort in the idea that these things say so much more about the people who write them, than they do about our kids or the other people they target. And I'm grateful that the people who make the memes are few (if prolific) and that in reality, even on the internet, we have been largely embraced by people who have supported us and cheered for us.

You make such a difference to families like mine. When we feel exhausted and overwhelmed, you listen and encourage us. 

Thank you for that.

And if you know someone who makes memes like this. Please feel free to share with them some colorful words. Tell them the message is from me.

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With Liam, It's More Than Just A Tantrum

A tantrum from Liam is not a small thing.

One minute he's fine. He's happy. He's eating his breakfast and drinking his juice. And I keep reminding him that the table is not for climbing.

Then, for no discernible reason at all, it changes.

And my sweet, 3 year old Liam, loses his ever-loving mind.

He will not be picked up. He wrestles with any attempt to control him at all. He bangs his head, and bounces. Sometimes at the same time, sometimes alternating between the two.

This kind of thing happens at least once a day. At breakfast this morning, but it can happen anywhere and at any time.

Sometimes he gets rough. With me, and more importantly, with himself. He's developed a bruise recently, near his mouth, and I couldn't figure out where it came from.

But this morning I saw it, when he grabbed his own jaw and squeezed really hard. His thumb matched right where the bruise is.

This morning he pulled his hair, and repeatedly slapped himself in the face. All while alternating between quiet crying, loud crying, and letting out the most blood-curdling screams.

I got him onto the couch and covered him with a weighted blanket. I tried to speak soothingly, and prevent him from hurting himself. Then I took out my phone, and started recording it.

I recorded it for a couple of reasons. First, I'd like to be able to show the professionals who are working with us, what one of these meltdowns looks like, but that's really not the main reason I did it.

See, my pediatrician told me that if he's hitting or pinching himself on the face, I need to record it, so that I have proof that I'm not hurting him.

Can I just say how angry that makes me? Not at my pediatrician who cares deeply for my son, and genuinely just wants to make sure my ass is covered. No, I'm mad at parents who hurt their children.

Kids with special needs are especially vulnerable, because their care takes a toll, and increases stress, which leads to higher incidence of abuse. I understand it on a textbook level. On a maternal level, I understand it, not at all.

And because people out there do hurt kids, caregivers and professionals have to be concerned.

It means parents like me have to actually have to think simultaneously about meeting the needs of a child in the moment, and also protecting themselves so that they can continue to do so. While I understand it, it's so incredibly screwed up to think about.

The thing is, I don't feel stressed about having to care for Liam. Sometimes I feel inadequate and helpless, and there are things that do make me feel stressed in relation to Liam. But that's because I want him to be safe, cared for, and happy! And I don't blame him for stress. He's amazing. I'm so grateful he's here. Taking care of him, makes me happy.

I want to keep him safe. I want to figure out how to help him. And I want to be able to just focus on that.

I wish I knew what brought the tantrums on. I'd work to eliminate whatever is bothering him. I just honestly don't know.

I do know that his newest sentence is "Mommy, kiss" and that he really loves hugs. I know that this phase will pass, that we will figure it out, or he will outgrow it. I also know that we will likely face much harder challenges down the road.

But I have to tell you, watching my sweet little boy so angry that he is literally hurting himself, is almost more than my mommy heart can take.

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Liam Passes A Test! Sort Of.

Maybe I've mentioned that Liam head bangs.

Not like a rock star or anything. That would be fine.

No. Liam gets mad, frustrated, upset, annoyed, or, you know, finds a hangnail, and bangs his head with great force on whatever is close.

Whatever is close can vary. It could be anything. Like, the wall, a table, the floor, my face.

Oh yeah, I did say my face. Which really hurts, by the way. That child does not hold back.

So, I brought this up to his Pediatrician.

I mean, my kid has a permanent goose-egg on his forehead, and I'd like to know why he's doing this, and how to help him.

I'd also like people to not think I'm hitting him in the head with a hammer or something.

Anyhow, our Doc talked with the Neurosurgeon's Nurse Practitioner, and he ordered a CT and shunt series (which are basically x-rays that show where his shunt is and if everything is copacetic).

Ever dragged a toddler to a hospital from a nap?  If so, I"m really sorry.

The good news was that he'd slept a little, and was not a complete crab-fest.

The bad news was that he still hates CT machines, x-rays, and me for making him do it. And there was not enough sleep to make that okay. Not that there is enough. I'm not sure chloroform would make him comply with people making him lie down on a table to take pictures of his brain.

He's really stubborn like that.

The end result is that we don't know any more than we did before. His fluid levels haven't changed, even though they upped the flow of the shunt in February. INow they want to do a flow study to see if it's draining properly.

They've promised to sedate my toddler for that.

Doesn't that sound fun?

And of course I have mixed feelings. I'm glad there's nothing clearly wrong with the shunt that is causing my sweet boy pain, or anything. I'm also frustrated that it's not something simple that we could see and fix. Because my little Liam is still headbanging.

And still on my face.

On a cuter note, I think we read some of his favorite books 50 times each, and it turns out that he knows some new animals. Like elephant. He's really cute when he says elephant.

And being with his Mama can still make him calm down and be his sweet self again. Eventually. It's comforting to know I still have a little of the magic left.

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Motherhood: It's Not A Competition

Liam did a couple of really wonderful things today.

He told his daddy, "I lub you" clear as a bell. And later, when he wanted to try my glass of wine, he said "Uh wan sum". Liam learning 3 word sentences and using them appropriately is huge news for him, seriously.

That got me thinking about how raising a kid with special needs isn't like a movie where you build up to a climax and then everything works out. It's a series of successes and failures.

I had this whole blog post planned.... But then I went looking for an image for the post.

And I found the one above.

Moms, this is what is wrong with us.

Motherhood is not a damn competition.

There aren't points for natural birth (or birth at all). There aren't points for how many kids you have. There aren't points for crunchy living, or attachment parenting. And there sure as hell aren't points for having kids with special needs.

My kids are all special. Some of them are special for different reasons, but they're all special to me. And they make me better, sure, but not better than other moms. They make me a better me.

We all have a superhuman love for our kids. We all do more in a day that people realize. We all put aside our own wants and needs to meet the needs of our babies.

Our challenges may vary, but it's a damn hard job for everyone.

I can't stop people from making memes like that.

I can't stop people from treating both parenting choices and circumstances beyond their control, like levels in a game I never got the rules to.

But as for me? I'm going to try to encourage and support.

I'm going to recognize that I'm not better than anyone else.

And I'm going to keep treating this whole motherhood gig, like something we're all in, together.

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If you love your kids and wake up trying to do the best for them every day, than you're a good parent.
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