Thursday, March 28, 2019

Do You Only Like Healthy People?

Have you ever been to a baby shower, and everyone asks the expecting mother if she wants a boy or girl, and she says that it doesn't matter, as long as it is healthy?

What if the baby isn't healthy? Is that baby less worthy of being loved? 

Now think of your friends. If you have a friend who has depression, you rally around them, bring them meals, text them to check up... For about 2 weeks. Then that illness is old news. You move on to the next thing. Because they must have figured out how to deal with it by now. Surely, they have decided to be happy again, right?

I know that we don't intentionally do these things. I don't know a single person who would maliciously exclude non-healthy people from their circle of friends.

But it occurs frighteningly often, mostly because it can be more work to maintain those relationships, or we don't understand their illness, and so we avoid them because we don't want to say the wrong thing and hurt someone's feelings. 

When there is a person with a disability at your church, 9 times out of 10, the chances are that you will make a little bit of polite talk, but not really ask a lot of questions and truly get to know them, or invite them to your game night, because you don't want to accidentally offend them in some way, and honestly, you don't want to feel uncomfortable by being around them for an extended period of time.

When I take Chelsea out in public and people notice that she has a disability (which occurs more and more often as she gets older), most people walk by us and pretend they don't notice her little squeals and odd noises. But there is the occasional person that sees her, smiles, and tells her how beautiful her smile is, or that she has a cute laugh.

And that makes Chelsea GLOW. But she has no real friends, only superficial friends. Because it is hard to be Chelsea's friend. Nobody understands her, and sometimes she acts strangely, and it freaks kids out.

But there are also times when people notice Chelsea and actively avoid us because it scares them when a little girl makes strange growling noises and cackles. I had one little girl start to cry because she was scared of Chelsea. 

So it sure seems like as a society, we only like healthy people. But my goal is to reach out to those who truly need a friend. The mom with post-partum depression. The boy with a genetic syndrome, or the girl with an intellectual impairment. 

Because I want everyone to have a friend! 

Monday, March 18, 2019

The Oxygen Mask Analogy

Just about everyone has heard the oxygen mask analogy. That you are on an airplane, and the cabin loses pressure, so oxygen masks drop down. You are always instructed to fix your own mask on first, then assist the people around you. 

Sounds pretty straightforward, right? Special needs moms get this line all the time. That we need to fix our own oxygen mask on first. Take care of ourselves first before tackling other things. 

Here is the flaw in the analogy. I feel like when people think of this analogy, they imagine a nice family sitting side by side in an aisle, and you place your own mask on, take a nice breath, and then adjust your kids' masks in place. 

Here is what I picture:

The cabin loses pressure, and I am sitting in an aisle in the middle of the plane with my baby. My son is up near the front of the plane looking at the engines outside the window while my older SATB2 daughter has locked herself in the bathroom at the back of the plane.

Now, the pilot loses consciousness, so my husband has run up front to take control of the plane not crashing. I am holding my breath while I dash all over the plane- fixing one child's mask on, dashing back, maybe stopping for a quick gulp of air before I run back again to fix another child's mask.

That is the natural instinct for parents. I remember imaging what scene would look like if I did put myself first. I would be sitting there, maybe with one kid next to me with an oxygen mask, breathing fresh air while I knew my children were desperate for help. Needing me, but I wasn't there because I was too focused on my own comfort. 

I wouldn't be able to live with myself. I HAVE to help my kids.

So I HATE that stupid oxygen mask analogy that I hear all the time!

New Canoe Analogy

I heard a new analogy from a special needs mom that I greatly admire. 

She said to imagine that you are in a canoe, paddling upriver. You are paddling as hard as you possibly can, but then realize that your canoe has holes in it, and you are beginning to sink. 

So what do you do? Keep paddling?

No! You will pull over, kick everyone out of the boat, and patch up the holes. Once it is fixed, you will probably take the canoe out yourself to test it, and make sure that it will support your weight.

You need to know that the canoe will not let in any more water. You want to know that it is safe for your family to ride in. 

Then you slowly add family members back in before starting off on your journey again, now with a repaired boat. 

How Do I Repair My Canoe?
Everyone is always running around telling moms to make time for "self-care". Totally honest here- I'm not sure what that looks like. 

I always picture me getting my hair and nails done when I hear "self-care", but that doesn't help me feel better at all. Maybe until I get home and realized that I spent therapy money on a manicure that will wash away with the sudsy dish water. 

It was explained to me that "self-care" is something you do that helps you feel like not just a mom. 

For me, that is reading, talking to friends, taking classes, doing plays, running obstacle course races, and writing. 

Here again we will run into problems- who is going to watch the kids while we have this time? How can I afford to take classes when all of our money is going towards our kids? 

BUT- I also know that it really is important, and will try better to put myself as a higher priority. 

Monday, March 11, 2019

700% Mom Days

I am a firm believer that people prioritize what matters to them. And you see people who do incredible things because they set their mind to it and give 100%!

I have a cousin who has done a phenomenal job of eating right, working out, and he looks amazing! He really put his mind to it and has achieved some very aggressive physical goals! He is truly inspiring!

I have another friend who has the happiest family I have ever seen. Seriously, they are always smiling, she and her husband are always goo-goo eyed over each other, and they are so stinking cute!

There are so many inspiring role models I see that I would love to emulate! 

But now, I run into a recurring problem. 

I want to give 100% to my kids- to teach them, love them, and play with them. I want them to be happy and emotionally well-adjusted.

I want to give 100% to my husband- to support him, love him, and keep our marriage strong, because the vast majority of families with special needs kids involve divorce.

I want to give 100% to my special needs girls- to do therapy, make sure they have a better tomorrow, are taken care of and happy.

I want to give 100% to my gifted son- to encourage him, help him manage his emotions, to challenge him and keep learning interesting.

I want to give 100% to making my house a home- having it relatively tidy, meals cooked, with floors vacuumed. (because a messy house= an emotionally messy me, and babies eat crumbs)

I want to give 100% to my physical fitness- to finally lose those last 10 baby pounds, to feel healthy, to be strong and be able to keep up with my kids. 

I want to give 100% to maintaining my own sanity- taking time for myself, having a hobby, being a good role model for my kids. 

That is 700% y'all. And that doesn't even include a full-time job that many moms have! Or my church work, or volunteering, or taking care of changing air filters or getting that alignment done on the car. 

I wish I had some awesome advice to give on how to manage everything. 

But I don't. 

Sometimes there is no dinner made, and we have cold cereal, and I wonder if my children will grow up to have dreadful eating habits.

Most days in the last few months, I haven't made it to the gym because I am too exhausted physically and emotionally from managing three kids who are all very, very high maintenance in their own ways.

But that is okay. I do my best, and I'm sure that everyone out there does too. 

Even when we have bad days, we know that tomorrow is a new day, and we can get up and try again. 

That on the day when we need a break, when we end up watching some completely pointless tv show and sneakily eating the kids' Halloween candy, we can say "Today I am recharging." knowing that tomorrow is another 700% day.

And we will continue to give 700% every day, because that is what we moms do

Monday, March 4, 2019

Not Disabled Enough

I encountered a new prejudice targeted at me that I hadn't experienced before. 

When Chelsea was very young, I always felt the need to fight tooth and nail against "regular" people being mean because my baby was disabled.

Now with Lily, I am heading into the years ahead with a more relaxed, experienced air. I have done this once before, and I can do it again, and having a kid with a SATB2 diagnosis isn't the end of the world.

So when Lily was diagnosed, I headed down to the early intervention office and got her all signed up for therapy classes. Here is where the story starts:

I was in class with Lily, and had been going for a few weeks. I was starting to get to know one of the moms, and I thought we were becoming friends. She had a daughter a little older than Lily, and they were working on the same skills- crawling, pulling to stand, etc. 
Picture is Lily with our awesome PT!

As we were finishing up class one day, the physical therapist asked if we were practicing the therapy homework suggestions she gave us each week. 

"Oh yeah!" I smiled. "We love doing therapy together; it is so much fun! We do our work every day."

Because it is truth! I enjoy spending time with my baby, and most of the stuff that is assigned for therapy is pretty fun- stand in front of a mirror, crawl up stairs, blow bubbles and try to reach for them.

The other mom gave me a funny look, almost patronizing. "Well, I'm sure it is easy for you to do therapy since she is getting the hang of it. The rest of us have to work much harder." she said, and left. 

I found out next week that she quit because she didn't like the positivity I had about my child's disability.

Message: You don't belong in this group because your child isn't disabled enough

I have developed a much thicker skin over the years. But I want to discuss this mentality a little bit. 

Because I get it!

I was that mom when I had Chelsea.

I remember going to classes and seeing kids with Autism or Down Syndrome learning to walk and babble much, much faster than Chelsea was. 

I remember crying, wondering what on earth I was doing wrong that my baby wasn't developing. Wondering if there was some secret that everyone else knew that I didn't.

And was I ever resentful! I was so upset, knowing that I was working so so immensely hard, for hours every day, while other moms just seemed to coast through parenting without exerting much effort.

And it didn't seem fair.

So I don't blame the other mom who was upset that I seemed to be happy and doing well with my baby. I've walked miles in those shoes.

And let me tell you, those shoes hurt. A lot.

And I have walked in the shoes of a parent who feels isolated from other special needs parents because it seems like their baby's disability isn't as serious as THEIR baby's. 

So they automatically dismiss my concerns and feelings, because my problems don't seem as big.

It made me think about how I parent. Sometimes, it is easy to dismiss one of my children's concerns because their issue seems so trivial.

But to that person, that is their next big hurdle, and they are focusing all their energy on it!

So no matter how big or small someone else's trial seems to us, let's just cheer each other on! 

The world needs more cheerleaders and fewer critics.