52 x2. Will You Take Care of Me?

We celebrated Moms yesterday.  Since I don’t post on Sundays, I’m taking the opportunity today to re-post my favorite Parent post because I love Mom and Dad and I recognize that they do some serious heavy lifting to take care of me daily.  xoxo

In other news, I went to Whole Foods with Ernie and Kpop/Ez on Saturday and the one we went to has a parking garage underneath, and then you have to make your way to the upper level to access the store.  I rode the escalator for the first time!  I have considered it before, but have chickened out or it was vetoed by Mommy.  But this time I climbed on (that was the hardest part) and Ernie rode up before me and prepared to meet me at the other end.  But I had so much time to look at the top of the stairs and gauge the speed at which the escalator was moving that I was able to step off smoothly.  My brother characterized it as “anticlimactic.”

This is how Mommy takes care of me – comfort food!

I had a few minutes after VT yesterday so I sat down and read a book.  Childrens’ books generally have large print so they are easier for me to read.  Plus they are heavy on the pictures, which I also like.  Much of the clientele is pediatric, so the waiting room has a bunch of books and puzzles for kids.  I picked up a hardback picture book called Will You Take Care of Me? (Bridges & Sweet, Harper Collins 1998).  The premise is that a mommy kangaroo and her baby are on their way home. On the way, the baby kangaroo asks a series of questions, e.g. “If I turned into an XYZ would you take care of me?”  The baby imagines turning into many things, including an apple tree, a bicycle and a bar of soap, and each time the mommy responds with some appropriately witty answer that indicates she’ll always take care of the baby no matter what.

At the end of the book the little kangaroo asks, “What if I became a baby again?” – would his mom redo the hard work of caring for an infant?  Of course the mommy answers with a resounding “Yes” and I was ready to bawl at that point.  Thankfully my own Mommy came in the door at that moment so I distracted myself with putting on my coat and getting into the chair lift.

The reason why that book made me sad was because that’s what happened to me.  I was 30 years old, able to support myself and live independently, and then all of a sudden I became a baby again and my parents had to move to OR and do everything for me.  I’ve asked Mommy about it, and she kind of shrugged and told me, You’re our child.  Where else would we be?

Many people might agree and think that what my parents did was an ordinary and expectable response.  Based on what I’ve heard about parenthood, perhaps others would have done the same thing.  I’m just pointing out that my parents rearranged their lives to move to OR for a few months, then kept on rearranging them so I could move back in with them.  Naturally, it’s hard for me sometimes since I’m an adult and was used to living in absolute independence, but I gratefully acknowledge the backbreaking work my parents have put in to take care of me, a very large “infant,” since I’m physically unable to care for myself.

Since it was unknown when I’d wake up, Mom and Dad just waited by my bedside for over a month.  “Wasn’t that boring?” I asked one day.  Mommy didn’t even dignify my question with a response.  She just made a sound like, Pshaw.  The sameness was made bearable by the expectation that one day I would wake up, so they waited patiently.  Spoiler Alert:  I woke up and gave lots of people a (mildly) hard time. 

What happened to me was sudden, meaning there was a point in time that marked my transformation from independent to disabled person.  But there are many folks who face a life of caring for a child with special needs from the point of birth.  The road can seem awfully long and I applaud those parents who care for kids like this on a daily basis.  I also take my hat off to the grandparents who spend their golden years raising their grandchildren for whatever reason, but I digress.

When I was in OR I got to know a family with 2 daughters.  Our care group met at their house and the dad was the ringleader.  He also happened to work in the group I interned for in 2008.  The eldest (K) has special needs and will likely require care for the rest of her life, and the youngest (B) is currently away at college.  I got to know them both, and got along with K since I thought we were very alike (more so now that my filter is compromised), and I was also like B in that we both tend to work/study a lot.  Maybe a bit too much.  Their mom told me once that sometimes it might be hard to face a lifetime of care (when the normal way of things is to be an empty nester and eventually spoil grandkids) but in the perspective of eternity this life was actually very brief, and her expectation was that God would eventually make everything okay.  This thought took hold of me and gave me the perspective/courage I needed to leave my family and move to Africa.

I also know a family here in the D.C. area with 4 kids.  The eldest has Down’s and is a complete riot.  I only met her once, but I still hear stories about her that make me laugh.  When she was born people understandably struggled to find the right thing to say.  Some of the comments were a little too pitying to be encouraging, though, making her father glad that he was/is her dad, not anyone else.  Thankfully,  the Lord knows where to put kids like us.

Picture of the Day:  

Doing what we do best.


139. How to Care for a Special Needs Child

How to Care for a Special Needs Child

This is by no means an exhaustive list of ways to care for a special needs child, but it’s just a few thoughts that have grown out of my experience as a SNC (technically I’m an adult, but have become a child again in many ways) as well as my interactions with the special needs children in my life. Obviously I am not the parent of a SNC but Mommy and I have discussed this at length. Anyway, think of these things as a starting point.

1) Care for yourself.
If you’re a caretaker, remember the safety speech flight attendants give before take-off: You’re supposed to fix your own oxygen mask first before helping your child with his/hers. This applies to caring for children with special needs – you’ll be no good to anyone if you’re so harried you’re making yourself ill. Taking care of yourself might require you to accept help from others, e.g. people might volunteer to do things like come and fold your laundry, cook you a meal; or perhaps you might decide the best course of action would be to hire a housecleaning service; maybe you need a mental break and you want to go to the spa or play golf. It doesn’t make you a bad person, or an inferior caretaker for seeking/accepting help or relaxation. It allows you to save more energy/recharge for your primary job function.

Also, if you’re an interested onlooker, be a huge cheerleader for the caretakers you know. A long time ago I read the bio of Nick Vujicic (the young man born without arms or legs, he travels the world speaking and despite his lack of limbs he has impressive mobility skills. He also apparently has excellent balance – I think the cover of one of his recent books shows him surfing. Surfing.). He said that when he was born (I think he was the firstborn, and there had been no indication that the infant would have any issues) no one sent his mom flowers. Now I’m not going to blame any friends of the family for not sending flowers since it’s so hard to know what to do/say in a situation like that – perhaps they thought flowers would have been more upsetting? But I’ve thought about that story for a long time. So I’m re-gifting this beautiful bouquet that I received in the ICU – they’re a little late, but they are in celebration of the new grandson that just joined the family.

Flowers for Nick Vuijic's Mom, FOMO

2) Remember the siblings.
The family that includes a SNC might often find itself dominated by the immediate and admittedly urgent needs of that child. If there are siblings in the mix we don’t want them to get lost in the fray. The siblings are the SNC’s greatest chance for normalcy in that they will need to learn how to “push and shove” as they grow up, like normal siblings do. Also, the siblings can be the SNC’s greatest advocates when the parents aren’t around to shield from playground meanies etc. So whether or not you’re a member of the family, or just a concerned onlooker, remember the siblings and make them feel special, too.

Side note: In case my siblings haven’t figured this out yet, they all fall into the category of people I can never do enough for. I can’t even begin to list the things they’ve taken care of for me that allowed me to move back to our parents’ house and live my outpatient life. Also, I’m thinking of one particular story in which someone showed special kindness to my sister simply because she’s my sister. That one act won my loyalty for life and opened the door for our kind friend to get to know what a funny and lovely person Ai Ai is as an individual.

3) Celebrate the small stuff.
When I first learned to sit up my parents would sometimes Skype with Ernie & Co. while I was sitting in my Physical Therapy chair. One day, Ernie, Karine and Ezra were on the screen and I remember Karine looking at me through the computer’s camera and saying encouragingly, “That’s good sitting, Aunty Ning Ning!”

When I was officially let go from my job I celebrated by hosting a frozen yogurt party for Hannah and Josh since I was staying with them at the time. Celebrating turned a sad occasion into a happy memory.

Being a party waiting to happen (and I don’t even like parties) helps break up the monotony of recovery. And if you think about it, there’s a lot to celebrate. Just be enthusiastic so the SNC can get on board with things as simple as sitting in a chair. An accomplishment is an accomplishment. Let’s call a spade a spade.

4) Make adjustments so that SNCs can help.
This weekend Ruthie asked me to snap the ends off of the asparagus for dinner. I was only too pleased to be able to do this simple but therapeutic task (I focused on my weaker hand’s movement).

I used to be able to reach the washer and dryer from my wheelchair, but since I started walking it has gotten harder since you have to stoop a lot to get things in/out. So Tanpo suggested I wheel Jack, my transport chair, over to the laundry room if I really was bent on doing the wash. Yes, I’m bent on doing the wash because being able to do things around the house is a HUGE notch on my belt as a SNC. Mommy has to get the things out of the back of the dryer for me, but the little helps I receive contribute to me being able to help in my own way.

5) Communicate love and acceptance based on the SNC’s current state.
There is a lot of hope in the way I live since we’re waiting and seeing what the extent of my recovery will be. But I know that if I could only lie in bed (like the early days), unable to even communicate by blinking, my family would love me anyway. It might be the case that a SNC is incapable of “helping” around the house in any way as detailed in #4. In the event that an SNC can’t even squeeze your finger back as you sit by his/her hospital bed, hold his/her hand anyway and continue to talk to them. Even if I don’t get one iota better than I am today, I know that my family loves me because of who I am at present.

6) Cultivate a spirit of thankfulness.
I read the story of a child in another country whose mother carried him to school for 2 or 3 years since he did not have a wheelchair. The problem was that the teachers were beginning to tell this mom that the child was getting too old and too heavy for them to lift around the classroom. That’s when Joni ET’s organization, Wheels for the World, stepped in and provided a child-sized chair for this young scholar.

Seeking medical treatment might be taxing on a family’s resources, but the fact that intervention is even an option, and that there are options to choose from, are wonderful privileges of living in a part of the world where such services are available. I’m not saying you need to immerse yourself in a world of depressing “could be worse” scenarios to cheer yourself up, I’m just saying that concentrating on the “Haves” instead of the “Have Nots” of your life is good practice for everyone.

This is the story behind the flowers pictured above. Also, these lilies are for the lovely Mrs. V, who recently delivered their first child – a beautiful baby boy.