myhollydays

A glimpse into the world of the handicapable.

Archive for the tag “spina bifida”

Adoption

When I was a kid, I never understood what it meant to be adopted. Meaning…I knew that I WAS adopted, I knew that I had a Korean mommy. I knew she couldn’t take care of me, but loved me very much-according to my mom. I just didn’t know what the whole process really meant.

I’m noticing that more and more of my friends, colleagues and people about my age are adopting…it is finally sinking in the reality of adoption. What it costs the birth mother emotionally. I couldn’t imagine what it would be like to hand over Caiden to complete strangers and trust that they would love him as much as I do. I can’t imagine the sacrifice my mom and dad made when they decided they would take me in. How difficult it must have been to have a child that doesn’t speak their language, doesn’t look like them and have no idea of her full potential (physically, emotionally and academically). I don’t even want to get into how much the adoption itself cost!

I applaud all the moms and dads out there that have welcomed those who are considered “unadoptable” (like myself). Wow…

Now that I’m all grown up (I’m using those words loosely), I appreciate all that my parents did to make sure I felt loved. They did a great job making sure that I knew that I was hand picked and wanted. They pushed me because she knew I could do anything I set my mind to. I am here today, a wife, a mother an educated professional…and able to achieve all that and more because of this great country and my awesome parents. My parents never made a distinction between birth kids (aka the “real” kids as some would say) and the adopted kids (er…fake kids?). We were a family and there was always room for one more.

I do think of my birth mother every once in awhile. I think how hard it must have been for her, but at the same time I am a little bitter at the country that (at that time) weren’t as open minded to disabilities as the Western world.

But I’ll let you in on a little secret…my brain still thinks I’m Caucasian.

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…I Was Bitten By A Radioactive Disabled Person…

Questions I had been asked these past few weeks…

“What did you do to prepare for pregnancy?”

Since my husband I decided we would like to start a family, I began researching…a lot!  There wasn’t a lot out there and I didn’t know what to expect.  I contacted other women with Spina Bifida that had children, and asked them what they did.  I also boosted my Folic Acid intake and watched my diet.  I relied on the support of my siblings and close friends (and of course my hubby) to keep me positive.  As you can tell from older posts, the pregnancy went well.  Caiden is healthy and happy.  I am healthy and happy.  I would probably recommend to anyone (regardless if you have a disability) to stay in contact with your doctor, and keep an open line of communication with your health providers.  No one will have the same outcome or the same situation.
“Weren’t you worried that Caiden would end up with SB?”

Yes.  I was worried.  However, God is in control and wouldn’t give us anything we couldn’t handle.  I know this sounds SO cliche…but it’s true.  I think I also recalled something a friend had said to me in college…”What’s the worst that can happen?  Can you live with that?”.  The worst case scenerio would have been Caiden born with Spina Bifida.  It would mean medical issues, complications, possible learning problems, possible social problems, etc.  Wait…that was my childhood…my mother’s worries for me.  Well, I think I turned out fine.  I think I would have the first hand experience to help raise a child with SB.  We would have loved whoever God gave us.

“How did you get SB?”

see title to this blog…

“What difficulties do you face now that you have Caiden?”

I think worrying about him constantly.  He is mobile AND determined…a VERY bad combination for me!  =)  I love this kid dearly…but I can’t take my eyes off of him for second or he’s into something.  As far as the wheelchair and my disability…I’m not sure.  I think adjusting to the crib height.  I also have issues with saliva…need I say more.

“Would you adopt?”

I would like to.  Maybe not in the near future…and certainly not 18,  but we like the idea of a little girl in our family.

Have a question?  Morbidly curious about something?  Send those questions my way!

…And It Begins…

Caiden is sleeping in his own room.  He is in his own bed.  My hand was forced!

It started out like this…

I put Caiden in his little bassinet three days ago.  I turned around to clean off the coffee table and I look back and not only has Caiden sat up, but he started pulling up on his legs.  He was leaning over the side of the bassinet onto the couch arm rest (luckily, that’s the side he chose for this death defying trick!).  I quickly rolled to him and put him on my lap.  Sadly…an end of a stage.

My heart broke a little bit.  My baby, this precious little boy that was in my tummy, is mobile.  When Chris came home, I had him lower the crib and the pack and play.  We are now in the process of baby proofing the house…this will be our next adventure.

The crib is a bit deep for me to get Caiden out of, however, I can get him out by myself.  He usually sits up for me and then I stand him up and lift him onto my lap.  It’s awkward, I admit, but effective.  I’ll need to get used to the height, and the feel of the crib.  Another factor to consider…his weight.  Luckily, I am adapting well to his continually changing body and mass.

With each new skill he’s picking up, I can’t help but fall even more in love with this baby.  Who knew…?  Me…married…and a mother!

It’s a Sling Thing!

Episode 02 from Holly Cates on Vimeo.

Mini-sode Episode 1: Going for a Roll

My Holly Days Mini-sode Episode 01 from Holly Cates on Vimeo.

What was I so worried about?

Caiden is a little over 5 months now.  He is so happy, just smiles all the time.  He is also just a laid back kid, nothing seems to faze him too much.  He is a social little bug!

Since the summer began (2 weeks ago!), I get to stay home with Caiden and just hang out with him.  I LOVE being at home with him.  I get to see him try to crawl, give me the MOST DRAMATIC frowns, and give me the happiest squeals and giggles.  I am also VERY protective of him.

I think the reasoning is that, well, first off, I’m a mommy.  Secondly, I feared (okay, I admit, I still fear) what others would say or think of him having a mommy in a wheelchair.  I get the vibe at times that some people are not too pleased that I made a conscious choice to get pregnant.  I could have “spread” my disability to him, or made his life harder than it needs to be.  WELL…to be honest…who’s life is NOT hard?  Seriously…!

However, the thought still stays in my head.  I keep thinking…well, I grew up like this (you know…not walking) and I’m used to the stares, the nervous smiles and the “OH @#*&$ how am I supposed to handle this situation” looks.  Chris (the hubby) married me knowing he would have to deal with the above types of people.  He is used to it.   I am quite in awe of how brave and self-confident he is about the whole situation.  It never bothered him, even when others were worried for him.

BUT…I brought a baby into the equation.  Caiden wasn’t really born into it (not really), and he didn’t choose this lifestyle or his mommy.  So, I fretted (as any normal mommy would do) about how others would treat him, what other people would say to him, or how others would treat me when he’s around.  I know I can do anything I set my mind to.  If you give me a challenge, or just tell me I can’t…well, I will do anything in my power to prove you wrong…and then some.  Still, you have people out there who do not know me well, and will still try to limit me.  Not really on purpose, but trying to be the good Samaritan, or trying to “help”.  It’s condescending.  Plain and simple.  I do not need to be taken care of and I usually don’t need assistance…unless I specifically ask.  =)  I don’t want Caiden exposed to that type of mindset.

Yesterday, for the first time ever…Caiden and I went out to a place that wasn’t with my husband or family members.  I took Caiden to the store.  Just me and Caiden.  I was so nervous and scared.  I wasn’t nervous because of the transferring in and out of the car, or being able to carry him around, that’s EASY PEASY!  It was how I thought people were going to react.  I thought people might stare at me or at Caiden and judge us. I thought people would be rude, or disrespectful.

I got out of my car, put Caiden in his front carrier and we rolled in to the store.  This is the store that Chris, Caiden and I usually go to every week.  It was so intimidating at first.  But everyone cooed and smiled and played with Caiden and greeted me in such a respectful manner.  The employees were so nice and friendly.  The customers were hilarious.  Chris was right…they weren’t judging, they weren’t disgusted.  They wanted to help.  They wanted to see what they could do to make things easier.  Why was I so worried?  I forgot, most of this world is actually…good.  =)

God knew what he was doing when he gave me Caiden.  We are a perfect match.

So, that’s one fear confronted….so many more to go.  But you know what?  I’ve got time.  =0)

Adaptability

Today was a good day. School is almost at an end, and summer vacation is fast approaching. It also means that Caiden is getting older…and more mobile.
Yesterday, I sat him in his pack and play and watched as he rolled from back to tummy and back again. He sits on my lap and we ride. He also nurses with his feet on my wheels. It’s amazing how adaptable babies are. Caiden somehow knows what I can and can’t do, and seems perfectly fine adapting to me.
I can’t wait to see what he will be like when he’s a little older (although parts of me want him to stay a baby!).
Ok…time for bed!

I’m back!

Caiden on our first family vacation!

It’s still hard to believe…my baby boy is almost 5 months old. He gabs, rolls, laughs and grabs. He is a bouncy baby boy, and he is ACTIVE! He loves to jump (with help from his mommy and daddy) and dance, sing and play. It’s amazing how much this little Zoomie has grown.

I think what amazes me so much is the fact that he was in my body 5 months ago! Now that he’s older, he is able to bear weight on his legs and stand on my lap and he TOWERS over me. He is tall!

Everyone asks “What’s been the hardest part of being a mommy and being in a wheelchair at the same time?”. Well, to be honest…being a mommy has been easy. Being a mommy in a wheelchair…well, that part is easy too. After all, it’s basically the same thing…only, I’m faster down a hill.

I think I had a few concerns before Caiden was born. However, I figured it out with time and thanks to my wonderful, supportive and amazing husband. Here are a few things that I had on my mind before his birth:
1. How on earth do I carry him?
Easy peasy! When he was a bit younger (AND A LOT SMALLER), I could fit him in the crook of my arm and then push my chair by gliding along a wall or whatever free standing furniture was close by. I still do that, but not as much since Caiden is able to sit in my lap. I also use a carrying pouch. As long as Caiden is facing out, he is happy. He is definitely a great rider!
2. How do I travel with Caiden?
Again…easier than I thought. I carry him to my car with my pouch. I am fairly (and unnaturally) strong, and so putting him in the car seat was very easy. Then I load myself in the car…and voila! Off we go!
3. How would others view me? Meaning…how would other people (strangers and acquaintances) react to me with a baby on my lap?)
I’ve taken Caiden to the store, mall, park, etc. many times now. I usually get positive (or puzzled) reactions, but never anything negative (knock on wood). I can let my imagination go wild some times and it never bodes well for anyone. =)

Actually, when I post on Facebook (granted everyone on my FB account is someone I know personally), I get pretty positive responses. I am usually greeted with supportive comments and friendly well-wishers. I had noticed that a group that I belonged to hadn’t had much to say to me during and after the pregnancy. I know that there are people out there that did not want me to get pregnant in fear that I would give my SB to my son. I don’t think people realize how hard the decision was for me to become pregnant. I did worry about my health…about my mobility…about my job. I worried about finances…I worried about money…about my ability to be a mom…about…well, everything…I’m human. I worried so much about what my in-laws would think or say or react to my ability to handle pregnancy and being a mom. I worried about my family…how would they react, say or think.

But now that I have him, none of that matters. Of course…my worrying didn’t help, hinder or solve a thing. In fact…it was a waste of energy!

My sisters, bless EACH of them, would listen patiently to my worries. It was endless hours of me worrying and countering each with a sweet and loving reassurance.

But now…he’s here. He’s in my arms and made his way to my heart. I couldn’t imagine life without this little boy. I couldn’t imagine life with out my strong and loving husband. There is a reason why marriages either get stronger or break when a baby is introduced into the family. There are so many things that we have to communicate to each other. There are so many compromises and teamwork. I feel like I’ve met a whole new part of Chris. I love watching the two together, it makes me feel so complete.

My boys!

THAT’S why people think this way!

I was chatting with a friend about an incident that occurred not too long ago (in a land not too far from our own).  She was helping a client get a position and the potential “employer” (I shall call them poopoo head) was being so narrow-minded. Poopoo head insisted that the client would be unable to do the required tasks because… (insert limitations). I’m usually (heh) even about dealing with ignorance and stupidity, but the reaction of this poopoo head angered me.  She didn’t even give the client a chance.  It just brings me back to the days of interviewing and having to deal with the same thing.

Anyway…

I was doing research today on common myths and misconceptions about with Spina Bifida (SB) and found it interesting that the same myths kept popping up. No wonder people can be so ignorant! When you see the same facts posted again and again, you seem to just accept it as fact.  There are so many misconceptions that people just assume it’s true without researching it.

Here are a few in circulation:
1. People with SB die at an early age.
2. Have learning disabilities
3. Are mentally retarded
4. Can not have intimate relationships or capable of reproducing.
5. Are sterile (I know, right?)
6. Unable to drive
7. Unable to live independently

I admit, I may be a unique case…no wait! I’m not! I know so many SB adults with full lives and families of their own. I guess the websites were trying to say “some” SB kids can exhibit all or some of the characteristics, but not all.

Sigh…

I married a “walkee”…

Say it with me...COMMUNICATION...it's not a bad word...or is it?

Communication is so vital in a relationship. When a person says one thing, the other would read between lines that don’t exist. For instance…
“Oh, you look nice today.”
“What are you saying?! Do I NOT look nice all the time?”
Or they really don’t mean what they say.
“Oh…my favorite sword…you broke it. It’s alright.”
REALLY…he’s thinking…YOU BROKE MY SWORD…HOW COULD YOU? IT WAS ON PURPOSE! ADMIT IT…YOU WERE JEALOUS BECAUSE YOU DIDN’T HAVE A SWORD! NOW WE BOTH DON’T HAVE SWORDS.
(This conversation never took place. All events, words, conversations were completely fictional and the work of Holly’s imagination. Any events similar to this conversation is purely coincidental.)
What happens next? If you’ve been married or in a relationship before…well, you know what happens. Hurt feelings…yelling…gnashing of teeth…yadda yadda yadda…

My point…

Having a disability is one thing, but being married to someone with a disability is completely different…especially if you don’t know anything about disabilities in general (except things that are told to you by a friend of a friend). When Chris and I first dated, I don’t think it crossed his mind that dating me would be any different than dating an able-bodied girl. I never stopped to think about his perspective because he made our relationship seem so easy.

March 14, 2009

There are many compromises, give and take and reliability in our marriage…we are not perfect by any means (we argue and fight…who doesn’t?). But when it comes to getting things done…say, for example: I may not be able to do something (taking out the trash…putting up dishes, etc.) instead, I’ll find things that I can do so things won’t always have to fall on him (for instance; load the dishes into the dishwasher, cook, clean, clean out the stupid lint trap from the dryer even though it’s sticky and messy and I hate doing it, but I’ll do it anyways because I love him…oh…right…focus!). It doesn’t apply to house chores only…but in everything we do. We just make it work, because we want us to work.

I was very fortunate to have dated and married a guy who states exactly what he wants (or what he’s thinking at any particular moment). He tells me what he needs, or what he’s sick of…or what he likes. Sometimes what he shares has hurt my feelings. I know he is not trying to hurt me, so I try not to take it personally.
He is just being honest with me and wants me to be aware of how he feels. There are times when he is just thinking out loud; he’s concerned about me, or us, or the baby. I’m grateful (most of the time) because I know what to do to help, and sometimes that means he doesn’t want help, he wants me to listen, but at least I know what’s going on in his head.

I’ve also learned that I can’t hold him back from what he wants to do. If he wants to climb Mt. Everest…so be it. I will just sit back at the cabin at the foot of the mountain and wish him luck! But I won’t tell him he can’t because I am not able to.

In college, as our relationship became more serious, he worried about our future together. What would it be like? What would be required to take care of me? What are some things about me that he would have to learn?

Questions often plagued him, and as each one popped up, he would always come to me and we would talk about it. People would tell him things they heard about people in wheelchairs, and Chris would discuss it with me and we would confirm or deny the “rumors” (seriously…I’m so grateful for the internet other times I could just strangle the person that posts an opinion but call it a fact!).

I don’t know everything (you’ll never hear that from me again!). There were times when he would come up to me and say “I heard that people in wheelchairs (insert the hearsay), is that true?”. Well, I’d be stumped and have no idea. I know, I know…shock and awe…right? You would think having a disability would lend you the expertise and knowledge of that disability and automatically you become an expert. NOPE! I’m still learning as I go.

It was a long process in our dating life to get to a point where he was at ease with the level of care he would have to provide (which at this case is minimal).

He still loads my wheelchair in and out of the car (depending on who’s driving), and carry me up/down stairs at the movie theaters/concerts/etc. if we didn’t have handicap seating. This is the level of care he provides. I am completely independent and do not want his help. (So, if you notice he isn’t pushing me up a hill, or loading my chair into MY car don’t give him a dirty look. I’ve already told him I want to do it myself…again…dignity and pride! Actually, the real reason is so that I can keep up my upper body strength. Plus, I really don’t need the help.). =)

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