Tuesday, November 11, 2014

Down Syndrome Is Sometimes Hard

The other day, I let myself wonder- "Is it supposed to be this hard?"

You know, having 3 small kids. Is it harder because Addison has Down syndrome? Is the equation of our lives thrown off balance because as we add babies and watch them grow, the top end of our crew isn't growing at the same rate?
After I carry in the baby from the car- I carry Addison. Not because she can't walk the path to the house. She absolutely can. But she's just as likely to take a mad dash down to the road, and with the baby waiting in the house, and Carter skipping off to find his rake- I just can't risk it. So I scoop up her flexible self and feel her lean into me as I carry her to the safety of our house. My back feels a twinge, and I wonder how much longer I can keep this up. She is getting big.

After I change the baby's diaper- I change Addison's. She is making huge strides in potty training, and she does her best work at school. But she still has days where she has more accidents than not, so diapers are still a regular feature of her wardrobe, a few months shy of her 5th birthday.

Addison sits in the grocery cart with Carter which means that Eli doesn't have a seat in the Costco double cart even though he is very much ready for one. It is now ridiculous to put him in his infant seat in the back of the cart. He needs a seat! But Addison can't be trusted to walk. She will run off in .03 seconds. My entire life is built around keeping her safe, confined, and with me in spite of her recent desire to run free. So Eli remains stuffed in his carseat- like a sausage ready to burst on the heat of the grill while his sister keeps her seat. Eli has to wait until Carter can be trusted to walk full time for a seat to become available for him.

After I dress the baby- I dress Addison. She can pull shirts and pants on, but putting on a whole ensemble for school? If I let her dress herself we would be at least a hour late every day.  I don't have the luxury to sit around and wait for her as I might if she was my one and only. Toddlers fly around this house like dust in the sunlight. I gotta stay on my game, quickly moving from one child to the next, keeping everyone safe and alive.

These things and many others take up my day. And I wonder- is it supposed to be this hard? Is it so much harder because my almost 5 year old can't do many things for herself- let alone can't help me with the others? Would this be easier if she was typically developing?
October was Down syndrome awareness month, and while I appreciate the sentiment, sometimes I tire of hearing a month long shout to the heavens about the AWESOMENESS of Down syndrome. I have news for you- sometime's it's not awesome. What then? Do we still celebrate it?

I think it's a disservice to the world to talk only about the good, and not the hard.

It's a bit like when Christians post "The test results came back negative for Down syndrome. Praise the Lord! God is good!"

I would submit to you, that it is equally true to say "The test results came back positive for Down syndrome. Praise the Lord! God is good!"

Why are we so afraid to call out the hard for the good that it also is?

Why am I afraid to say- sometimes it is hard to have a child with Down syndrome. It can be a lot of work and frustrating at times.

If I say that out loud, if I whisper my "is it supposed to be this hard?" does it then give credence to those who are running the campaign to banish Down syndrome from the world via abortion? Those who are making the decision as to whether their child will suffer or have a good life- will it tip the scales toward the negative for them? Am I allowed to be honest or does it negate all of the awesome that I talk about- that IS of course there.

Something I am learning in motherhood, is to find beauty in the hard. And to find the beauty- you have to recognize that it is there.  (much like the beauty that is shining through this extremely dirty mirror)
I read an article this morning about a mother complaining that her typically developing 4 year old won't stop talking. "It's so hard!" she wailed "I never get one moment of peace!" My first thought was, "why is she complaining about something so awesome? Words all the time? Come to Mama!" She has what I wish I had with Addison right now, and yet she still thinks that parenting her child is impossibly difficult.

Parenting Carter is hard. This 3 year old phase assert-independence just might kill me. Parenting Eli is hard. He is determined to kill himself. I never get a moment's rest as he spends his days searching out and exploring. Someone might read that and think- I wish my 3 year old was spunky enough to be a wild child! I wish my 11 month old was that mobile!

No matter the details of our story, I think we can all agree that motherhood is hard.

So.....where is the beauty in the Down syndrome version of "hard"? How can a 4 year old who needs the care of a 2 year old be beautiful?

A few weeks ago while pondering this, I had an AH HA moment about motherhood.

The gift and reward of motherhood isn't what I GET from it all or how EASY it is made for me. No, my gift in motherhood is the ability to serve. Giving my all to my children. And no matter how exquisite the carving is on this stone- it will be hard.

"It is more blessed to give than to receive."- I feel like this just about sums up all of motherhood.

As I serve, as I give- there is so much beauty and satisfaction provided to me. Dying daily to my selfishness. Providing a loving home for my family to the detriment of my own comfort and rest. Gutting my heart and pouring it daily onto my family around me. This is their gift to me- allowing me to serve them. Allowing me to give. They are all so needy right now- perhaps it won't always be so. But will Addison allow me an extended period of giving? Will she provide me extra chances to serve, thus giving me prolonged beauty and satisfaction in my job as her mother?

As I think about Down syndrome and the extra service that Addison requires from me- I have seen first hand that this gives back extra reward. The ability to do so many things for her- is a gift to me. The service that she requires from me, pours me out daily in a way that is of huge reward to me as her mother.

This might seem ridiculous- counterintuitive. But so does the sentence "beauty in the hard."

But it is there. I promise you.

As she leans into me to be carried to safety from the car, I place a gentle kiss on her soft forehead and she smiles. It is a moment stolen and kept for just the two of us. A moment that we wouldn't get if she was walking in with Carter.

As I change her diaper, I think about how she is growing and changing into a big girl. I pray specifically for her safety- for her protection as she becomes a woman.

As she sits in the grocery cart instead of walking, she will often take her tiny feet and prop them up on my stomach as I am pushing the cart. She will reach her hands forward and try to grab onto me, giggling. Since she's in the cart, it is another moment for us- instead of having to give her over to all the distractions of the store.

As I dress her, we have a conservation about her outfit, and she helps put it on (she is more eager to help when she likes the outfit I have picked.) I get the chance to slide her shirt on over her smooth arms. I feel her strong legs resting on my lap as I slide her pants on. I remember how far she has come, and I remember to be thankful for the gift of life.

There is beauty all around me, even in the hard. Especially in the hard.

I am overwhelmingly thankful for it. Because without the hard? Down syndrome just becomes a one dimensional poster of AWESOMENESS instead of the real person in front of me with hopes and dreams, frustrations and pains, anger and joy. To claim only awesomeness turns Down syndrome into a campaign instead of celebrating the many faucets of the person.
Because show me ONE person who has no hard in his life? Just one.

It might look different with Down syndrome. But it is no less important to talk about- to feel- to power through.

Don't get me wrong- there are a lot of truly awesome things about Down syndrome. I am so thankful that it is a part of my life. But not just because of the awesome. I am thankful for the "not so awesome" stuff too. Because there is as much good there as there is in the other stuff. You just have to know what you're looking for.

So to answer my question- "Is it supposed to be this hard?" I don't know. Probably. But one thing I do know- I am thankful for the hard. Because it is showing me a new kind of beauty that I've never seen before.

No comments:

Post a Comment

Thanks for reading about my Everything and Nothing. I would love to hear from you!