A couple of weeks ago my husband, daughter, and I were walking out of Starbucks and there was an older gentleman sitting at a table outside. As I walked by I heard him say “cerebral palsy?” I turned and said “yes”. He then said that he had 5 year old twin granddaughters and that one of them had cerebral palsy. I asked him how she was doing and he said very well. He then asked me if I found that it was hard to make friends? I kind of shrugged and said I guess so, but that I had my group of close friends growing up and that I did not feel like I was lacking. He also asked if my husband and I grew up together, to which I replied that no, we met in college. We did not chat for long but I hope that I was some encouragement to him seeing that I was married and had a daughter.

Awhile back I was in a Bible Study and a woman was sharing her story about raising a child with a disability. She broke down in tears when she told us the story of them recently getting a puppy. She said that her son said to her that now he had a friend. She trusted in God to lead him, and trusted God in what ever her son’s future would hold, but (normally) she wondered if he would ever lead a normal life, ever be able to live on his own, ever get married, etc. I approached her after the study to say to her that as a disabled person myself that her son is probably stronger than she thinks and that he is so blessed to be raised in a Christian home with parents that pray for him every day. She was grateful for my comments.

It wasn’t until after hearing this woman’s story, did it even cross my mind that maybe my parents had thoughts like this when I was growing up. Now maybe I should confirm this with my mom before writing this post, but it makes me kind-of sad to think that they would have wondered these same questions... because I never wondered these questions about myself.

My parents bought me a car for college graduation. My mom shared with me later that they felt like they just left me with this car wondering if I would ever be able to actually drive it. The reason they bought the car is because I told them that I would need it to find a job and for transportation. I guess I just figured I would learn how to drive. I did have my driver’s license but when you get your driver’s license in a small town with no stop lights, no traffic, and a two lane highway, well... it doesn’t really give you any experience for driving in a city, parking in parking lots, changing lanes, getting on the freeway, etc. But that summer, with the help of friends, I learned. My mom also admitted to me once that she also had wondered if I would be able to live on my own and cook for myself, but that she also knew there were options like in-home care and pre-packaged meals that could make life easier. Turned out, I didn’t need either.

It also wasn’t until I had a child of my own did questions about my own child’s future pop into my head... and she’s not disabled. But I don’t dwell on these. I pray, and trust in God that she is in His hands. So I can only imagine the questions about my future my parents might have had.

I hope this post is an encouragement to a mother out there raising a disabled child. I don’t remember ever feeling pity for myself wondering if I would ever be able to live on my own, find a job, get married, have children. Yes I experienced flat out discrimination when looking for a job, but I wasn’t going to let that stop me and eventually I found employers that saw past my disability. I am strong, stubborn, and determined to accomplish those things I set my mind on...and patient. If you can not change your circumstances at that time, you can always change your attitude toward your circumstances. A dream I had growing up was that I would get married and have a family, but also in the back of my mind part of me knew that might not be a reality. But I chose not to dwell on that. I chose to remain positive, because feeling sorry for yourself doesn’t get you anywhere in life.

Um, I have kind of gotten off track, and I don’t know where I’m going with this so I think it would be best if I just stop now and say goodnight.

March 10

Well... it happened. The thing I knew I would never be able to do. The thing I tried not to think about because it saddened me the most. My baby fell asleep in the car and I was not able to carry her into the house.

Kiana fell asleep in the 3 minutes it takes to drive home from the baby-sitters. She was so peaceful. So sound asleep. But I had to wake her and make her walk into the house on her own. And it made me sad. She didn’t seem to mind, didn’t seem to be affected by it. She fussed a little when I pulled her out of the carseat, but then she walked/stumbled into the house half asleep, asked for milk, and then cuddled with me on the bed.

I don’t know why not being able to carry a sleeping baby or child in from the car is so upsetting to me, because she’s never going tro know the difference. But I guess it’s because I remember my parents carrying me in from the car and placing me in my bed after I had fallen asleep on the car ride home. A few years ago I watched the movie “Things We Lost in the Fire” and the only reason that movie was memorable to me is because there was a scene where the father carried his sleeping child in from the car and I remember thinking that I would never be able to do that.

If the stroller had been easily accessible today I would have tried to lay her in it and wheel her in the house. But, it wasn’t. Oh, well. I’m going to end this post. Kiana got her nap today and was unfazed by being woken up in the car. It was just a sad moment for me.

I'm a mom!

A couple of months ago I was at a resort having Sunday Brunch with my husband, daughter, and my parents. My husband was going through the buffet with me while Kiana was at the table with Grandma and Grandpa when my previous boss’s wife came up to me. I hadn’t seen her in four years, so it was one of those surprise encounters of “Hi. Wow. How are you? What have you been up to?” And I was so proud and excited to tell her that I was now a mom. I didn’t even care to mention about my job.

My ex-boss’s wife was happy for me. I had talked to her about wanting children 4 years ago so she had already asked the questions: “can you have a baby? will he/she be disabled?” etc., etc. But I knew she would probably go back to her husband and tell him that I was a mother and I’m guessing his reaction was shock. And I knew he would tell my ex-coworker that I was a mom. My ex-coworker is a mother as well, but I always got the vibe from her that she had an I’m-better-than-you, younger-than-you, don’t-need-a-college-education-to-make-more-money-than-you attitude. When we first moved here I was shocked at how many jobs a husband and wife had between them to raise a family. It is like 3 or 4. I’m thankful we have been able to continue to live here on 1 and ½ incomes. I’m so happy and proud to be Kiana’s mother. I’m proud that as a family living in a very expensive State that we sacrifice luxuries to put family first and that I only need to work part-time and am able to be home to raise my daughter. Aside from my relationship with Jesus, my family is the most important thing to me. So I’m proud that I didn’t feel like I needed to mention that I worked part-time because the fact that I was a mom was all that she needed to know. (So ha! I’m a mother too, but I stay home! (yes, that’s the evil side of me coming out.))

I had a woman a few months ago ask me if I lived on my own. When I said yes, and that I was married she was shocked. I decided it might be too much for her to take to mention that I was pregnant too. I’m a lot more capable in the comfort of my own home than I appear to be out in public. As a child I learned to ignore and not to be bothered by the stares and looks I get from others. But sometimes they do make me nervous and when I feel like someone is watching me, I start to tense up and shake and become less able of doing the task, making me appear to be even more disabled.

It is interesting the different reactions I get from people when I tell them that I’m a mother...or that I’m married, or have a college degree, or drive a car. Even from family and friends whom have known me for years. When people found out I was pregnant they had so many questions.

I didn’t have the answers as to how I was/am going to raise a child, but I knew/know that if God was going to bless me with a child that He knew I was capable, and that gives me peace. God does not give you more than you can handle (without Him). “I can do all things through Christ who strengthens me” (Philippians 4:13).

Sometimes I just like the shock factor.

February 19, 2011

Just another day...

I wanted this post to be about my pregnancy or labor and delivery, which is why I haven’t posted in awhile. I’ve been putting it off. It seems too daunting of a task. I’ll get around to it soon. But in a nutshell: my pregnancy- normal; labor and delivery- FAST, no drugs, natural, normal. “Normal” meaning that my disability did not affect my pregnancy or ability to deliver naturally.

I’ve started writing a post on pregnancy but the words just are not flowing. But I wanted to post something today... anything.

It’s a Saturday and I’m ready to face the day with my knee pads on and a thermos full of coffee. :)

15 months

My baby is now 15 months. Wow! Where has the time gone? She is getting easier to take care of, physically, for me. She understands a lot more of what I say, she’s able to communicate to me more, both in words and sign, and she is more capable of helping me.

Kiana is now practically dressing herself. She knows the process of putting on a shirt and shorts and puts her arms through the arm holes herself.

I still need to give her a toy to keep her busy during diaper changes, but most of the time she stays still. Sometimes, now, when I say “diaper change” she’ll run over and pull out the diaper changing pad for me.

The other day when I was getting the milk carton out of the fridge I realized it was too heavy for me and had to set it on the floor. Kiana came over, picked it up and tried to set it on the counter for me but it was too high. What a little helper.

There are new challenges though. Like trying to race her to the bathroom and get the door shut before she comes in with me and pulls all the toilet paper off the roll. She’s fast.

Kiana is an energetic little toddler, but she is very patient with me. We are beginning to adjust to my husband’s new work schedule and classes. Her and I are home alone more, with my husband schedule including working a couple of nights a week and in classes every other weekend. (She is only in childcare 3 days a week which is wonderful.) Fixing dinner with a toddler is interesting, but thankfully she does well at entertaining herself and is very independent (no t.v. in this house).

We have fun together and continue to learn from each other every day. She is such a blessing to our lives.

Happy New Year!

It has been awhile since I have posted. Sorry about that. Life has been a whirlwind of activity the past 2 months and it has only continued into the new year, but I resolve to write more often.

One major change in our life is that we moved. You may be asking, what does moving have to do with raising a child as a mother with a disability? Well, a lot actually. I’ve moved several times thus far in my adult life and it’s always a challenge for me to adjust to a new environment.

The challenges I face, just to name a few, when moving into a new place (as you can tell by now I like organized lists):
1. the feel of the floor under my feet affects my balance.
2. getting used to a new floor plan (specifically the kitchen and dining area) and moving about and doing tasks in the most efficient way without expending unnecessary energy. For example, getting an item out of the refrigerator, oven, or microwave and having somewhere to place it quickly before I drop it. Then preparing a meal and getting it to the table in as little trips as possible but without dropping anything on the way or losing my balance.
3. getting into/out of and balancing in a new bathtub/shower. Not all bathtubs are alike to a physically disabled person. There’s the height and width of the tub, the position of the toilet in relation to the tub, the slipperiness of the bottom of the tub.
4. the slope of the driveway and the ease of getting into the house, especially with bags of groceries.

And then add caring for a child in a new home to all of that.. It really does take me awhile to get used to and to feel comfortable living in a new environment. But I must say that I love our new home and I have plans to write an entire post just about the kitchen at some point.

Childcare

I don’t think anyone enjoys trying to find childcare for their child. It really is a pain. But here I am, once again, trying to find childcare. *sigh* And... once again, it’s urgent.

Reasons why it has become a challenge:
1. finding someone with space available for her age
2. finding someone to watch her part-time
3. finding someone to watch her as early as 6:45am
4. AND, what makes this even more complicated, is that I am not able to get her into the car to take her. So...

We have to work around my husband’s schedule so he can drop her off in the mornings on his way to work. I think I would be able to pick her up from childcare, after I get off work (I only work part-time), if the provider is able to put her in the car for me because I can take her out of the car once I pull into the garage. The frustrating thing is is that my husbands schedule varies from week to week and is never consistent, which makes giving a childcare provider a schedule impossible.

Of course, then there is the obvious fear, and one that brings me to tears, is the thought of dropping Kiana off with a complete stranger to trust to care for her as I would.

Ideally I would prefer Kiana to only be in childcare 3 days a week. This would reduce the cost of childcare and, most importantly, Kiana would be home with us. In a perfect world I would be a stay-at-home mom. I think IF we have another child, I will stay home because the cost of putting 2 in childcare is ridiculous.