Sunday, May 29, 2005

...With A Little Help...

I feel a bit disoriented today. I always write my weekly post on Sunday afternoons during my daughter's nap. But we'll be away this afternoon and I won't get a chance to write then. So here I am, Sunday morning, trying to get in the writing "groove" while Sweetie traipses around the house trying to entertain herself a little with her T.V. shows, Magna Doodle and new toy make-up kit.

She and I are going to my parents' house this afternoon so she can take a peaceful afternoon nap. My husband needs to spend his day back at home working on Sweetie's "pretty room" - her new bedroom that he's remodeling for her to move into soon. He'll be making way too much noise for her to be able to nap here today - especially considering that her new room is right next to her current bedroom. He's been working on this since last August and it's quite possible that putting in two full day's this long weekend will complete the project. Yay! We've even started the decorating process; we bought her new big-girl comforter just yesterday! It's beautiful and I can't wait to see the room finished, decorated and in use.

Anyway, the fact that we have to go to my parents' house today just so Sweetie can get a decent nap reminds me of the somewhat crazy extents I had to go to when she was an infant. My husband and I work at the same place, so most of the time we drive in together and leave together for home at the same time. But sometimes he has to work a little later than I do. For the times this happened when our daughter was smaller, we had to establish a special routine. We'd take two cars - he'd go right to work and I'd drive her to her sitter's house (not my mom, at that time). Our sitter would help us into the house, unclicking the carseat from its base and carrying the baby in for me. Then she'd help me again after work, placing her back in the carseat and into the car. But then - I couldn't just go home because there would be no one there to help me get her in the house. So she and I would head on over to my parents' house just for a little visit. My husband would call when he was on his way home so that he'd be there before me, ready and able to carry in the baby.

We eventually discovered that a co-worker of my mom's lives very near to us and she generously made herself available to me, coming over to our house just to help me get the baby from the car to the house, or vise-versa. On the days that we had to go somewhere, this worked out so much better than having my mom drive 20 minutes out of her way to help us for 2 minutes - otherwise leaving us stuck at home all day simply because we couldn't get to the car. Now, this woman's teenaged daughters sometimes come over to play with Sweetie for awhile so that I get some work done around the house.

I'm very proud of all the things I am able to do by myself for and with my daughter, from bath time to the trips we now take together, just the two of us, to meet up with friends. But I definitely have to thank the many people who have been extremely valuable to us in the care and raising our our daughter. All our family and friends do what they can to help me with her, from running after her at family functions, to helping me now walk her to the car and get the stroller set up and/or broken down, and so much more.

It all goes back to teaching Sweetie about helpfulness - she's fortunate enough to see so many people helping us out almost every day. I think she'll quickly learn that helpfulness is a very important and wonderful trait to have.

Sunday, May 22, 2005

Differences, Diapers, and a Delicate Subject

Things I need to do differently than the typical mother:

- scoot down the stairs with my daughter on my lap. She's used to this routine and has never questioned it or struggled for me. Soon, though, she'll be able to comfortably walk down the stairs on her own, then so can I.

- have her wear her toddler safety tether if she and I go out on small trips together.

- during her infant days, I became a pro at soothing her cries by sitting with her on the couch, swaying side to side and singing a familiar tune.

- acquire tricks (okay, bribes) to get her to walk to her highchair for me, or come over to me for a diaper change. She's getting way too smart for me, though, and doesn't always take the bait nowadays. If that's the case, and daddy's not around to assist, then we may have to eat in the family room where she can stand or sit on the floor, and/or I lightly tackle her to the ground when she finally ventures near enough for a quick change.

I think we'll give potty training a shot later this Summer or maybe early Fall. My nieces and nephews have been successful with this closer to three years old, so I'm in no rush with her to train yet at not even 2 1/2 years old. We did get her a potty chair earlier this Spring and, on that first day, she was very excited to know about it and "teach" her teddy how to use it. Even though I didn't plan to start training her at that point, I thought it would be a good idea for a potty chair to be in the bathroom so she could get used to it and "use" it when she wanted. Every once in a while she'll go in the bathroom and sit down, telling us she's "going potty". And every once in awhile I'll talk to her more about getting out of the heavy, wet diapers in favor of using the potty like a big girl. I think once we really make a concerted effort to train her, she'll catch on quickly and lose the diapers forever.

My biggest "worry", I guess you'd call it, is that I don't feel like I know how to potty train her. I know for myself when I have to "go", but I have always catheterized myself so I don't know what one really has to do muscle-wise to use the toilet. I suppose just knowing the feeling of having to go is good enough, but I don't know. Maybe my husband can give her some insight and help with the training. If not him, then my mom should be a big help, as that's where my daughter spends her weekdays. I'll have to read some potty training books, I guess, just to see what the general practice of potty training is like. As for our Sweetie, I know she knows when she has to "poop", but I'm not sure if she knows the words for/function of "peeing". So I think she'll master the "pooping" part of toilet training a lot sooner than the "peeing" part. I've tried to ask her more and more in recent weeks if her diapers feel wet and heavy - does she need a change? And sometimes she will tell me it's "time for a new diaper" - but then she resists me when I go to change her.

It seems most signs point to her being ready for the potty. So I'll keep enforcing her to "use" her chair whenever she wants (sitting on it fully clothed) and in the meantime I'll research more about how to help her learn. I wonder - are my concerns really all that specific to me, being a disable mom, or do many new moms worry about potty training their toddlers? Am I so different after all?

Monday, May 16, 2005

Smart, Talkative and Funny

Just wanted to write a quick bit on how funny Sweetie is. She's 29 months old this week, but she looks and speaks like a true 3 year old. Every once in awhile I notice a boost in her speech - a new bunch of words, better use of her smaller words like "the", "and", and so forth, attempts at storytelling, etc.

A few weeks ago she went with me to one of my doctor appointments at which the doctor gave her a Bob The Builder sticker. Later that night when her daddy asked her what she did she very definitely told him the whole story about going to see Dr. Russ for mommy's owie and she got a Bob The Builder sticker from him - she just didn't have good story flow or syntax at all. It was very cute, funny and impressive because it was the first time she tried to really tell a story.

We've recently taught her her full name - which includes 2 middle names. It was funny to see her face at first because she just knows herself by her first name - who was this other person we were talking about? But now she can rattle off her whole name with no problem at all.

My husband and I have also told her what our full names are. Today I put her down for a nap and, not wanting to be there, she was calling for her daddy - using his whole name! Very funny. This past weekend he was working on some construction in her new bedroom, so he had a bandana tied around his head. She sees him like this and calls him "Pirate Daddy". For as long as he had the bandana on, she referred to him like this, saying things like "what you doing, Pirate Daddy?" When she woke up this morning she even called for him saying "Pirate Daddy, take Teddy" (she's been doing that lately - asking him to come get Teddy from the crib - not necessarily her. Funny).

Anyway, she's just too darn smart, talkative and funny. She can count up to 20, can count to 10 in Spanish, knows some French words, and loves to sing lots of songs, making some up as she goes. She's a joy and we love seeing what she comes up with everyday.

Sunday, May 15, 2005


In an effort to further my marketable skills in the workplace, I am about to start an on-line course from a local college. The course starts this Wednesday, with assignments given every Wednesday and Friday for eight weeks. So I'm about to get even busier than usual and I'm going to have to prioritize my schedule. I have work to go to, work I do from home, and a house and family to take care of - and now this class to fit in somewhere as well. It's going to be an interesting two months.

Before having my daughter I never really thought of myself as a busy person. I think our long commute to work, now lengthened further by having to drop off and pick up our daughter from daycare (ie. - Nana's house. Thanks mom!) has made both my husband and I feel busier at home. Our workday evenings at home start late, so getting much more than dinner made is just not very realistic. So when the weekend comes that's when I'm able to get the laundry done, the carpet vacuumed, and the kitchened cleaned up a bit more thoroughly than during the week. And those are just the bare minimums in housework. Tidying the rooms or dusting are extra chores in my book, only truly necessary if guests are coming over. As far as my husband's weekend activities are concerned, he's got his hands full too. Our old house needs a lot of TLC, there are dump runs to be made, and yardwork to take care of.

And, of course, their's our Sweetie. She needs and deserve our attention as well. She alone keeps us very busy. Thankfully, she also keeps us very entertained - from the activities she wants to do to her new ideas and discoveries she shares with us everyday.

For the better part of her first year, I had a hard time figuring out how to prioritize her needs, the house's needs, and the things I needed and wanted to do for myself. My legs are weak, so I was not able to carry her around in a pouch with me as I took care of my household responsibilites. Nor could I leave a curious, newly mobile baby alone for extended lengths of time to take care of these things. Luckily, she is and always has been a happy, calm and self-satisfying baby so I did feel comfortable leaving her momentarily to switch the wash or put a few more things in the dishwasher. But for the most part, when she was awake I was with her. This was necessary for my care of her but also, being a new mother, I was simply enamored with my little baby girl and loved spending every moment I could with her. I loved the weekends when I could spend so much more time playing with her, watching her learn about the world around her. But soon the stresses and frustrations set in about tending to the rest of my chores.

I found myself wishing she would settle down for a good, long nap so I could take care of the house. However, when and if she did nap, I was so happy to finally have some time for myself to have a cup of tea, read a magazine or even nap myself. Then, after my rest I'd set upon finally getting the chores done, only to be called to her attention again by her post-napping cries. I just could not get a handle on how to prioritize my life.

What has ended up working well for me is to take care of the house as soon as I put her down for a nap. Then, after those responsibilities have been addresssed, I can take the remaining time to do something for myself. This way, when she wakes up I am relaxed and ready to draw, play blocks or whatever other activity she has planned for us. This routine has worked out very well - it just took me a long, frustrating time to discover it.

Now, with my class ahead of me, I'm going to have to devise a new routine to organize my responsibilites. At least it's the end of the TV season so I might not get hooked into yet another forensic drama or reality show.

Sunday, May 08, 2005

Happy Mothers Day

Today is Mothers Day and it has been very good so far. My husband and daughter each gave me a lovely card and we went to my favorite coffee shop for a relaxing breakfast. I got my Mothers Day gift a couple weeks ago - a book called "You Can Do It!" It tells you, step by step, how to accomplish different goals you have in your life. In fact it is thanks to that book that I have this blog today! I simply read the suggestion of "setting up your own website" on the back cover and I instantly got excited to see that goal through. The book has sticker "badges" on its back pages (similar to Girl Scout badges) to represent the completion of each goal. Today we stopped at the store where I got a beautifully colored poster board - someplace where I can put my badges. Always the Girl Scout, I am excited to see how many I can complete.

My first Mothers Day gift was a new dishwasher. Not very exciting, you're probably thinking, but it was great to me. It allows me to quickly take care of the dishes every evening as opposed to spending long periods of time on my feet cleaning up after dinner. With my back pain increasing so much after having a baby, it is a dream come true to take care of clean up so quickly! Having a dishwasher also allows me to spend more time with my husband and daughter - something I truly cherish, as our commute to and from work is so long. The small amount of time I have after work and before my daugher's bedtime can now be spent with her and not in the kitchen cleaning up. Awesome!

Last Summer I even started having my daughter help me with the dishes. She knows where the plastic containers go and she hands me the silverware for me to put in its place.

I have been talking to my daughter about being helpful to me probably since before she was one year old. For example, I have been able to go on short driving trips with her ever since she could walk - I just need her to wear what we call her "walkies" (a toddler safety tether). She knows now that if she and I ever go somewhere on our own that she needs to wear her walkies. Sometimes she is fitfull when I need to get her in the car and buckle her in the carseat. I remind her that she needs to be helpful to mommy and let me put her in the car. I understand, of course, that she is only two, but I feel that if I keep talking to her about helping mommy that soon it will just become a part of her daily activity. I know that she realizes, even now, that I cannot pick her up and carry her. She knows to go to daddy or another family member who happens to be around if she wants up. Occassionally she will come to me and say "Mommy, up", but I just say to her "Mommy can't do up, you know that" and she quickly and calmly goes to find daddy.

(I thought that I would feel sad about not being able to pick her up and carry her around. But that hasn't been the case at all. If she ever needs comforting or cuddling, I simply kneel down to her level and hold her in my arms for as long as she needs.)

I feel that my daughter will grow into a very tolerant, helpful and loving person, in part because of having a disabled mother. She's learning to be helpful to me and also to know what I can and cannot do. If I trip or fall down she is always right there telling me to "Be careful, Mommy." And my husband and I already notice that she has never questioned the braces I wear on my legs. We've asked her once what she thought my braces were and she answered, quickly and in the middle of her playing - as if she couldn't be bothered with such silly questions - "Mommy's shoes." All my life little children have stared at me when I'm shopping or whatever and I hear them asking their mommys "what's wrong with her?", "what does she have on her legs?", "why does she walk like that?". But my daughter has never asked anything of the sort or given me any funny looks. Of course, she sees me every single day and, to her, I'm just Mommy. So it shouldn't be that strange to me. But still, I am impressed with her reaction - or, rather, non-reaction - to my disabilty.

On the other hand, I know that other kids will be a huge influence on her. She doesn't go to a daycare yet, but when she does and the other kids around her see me, she will start to hear their comments and questions. I wonder what will happen to her attitude and views then. Will she be defensive? Will she start questioning me? Will she be sad or angry? I guess that's just another stage in her life that we will have to start preparing her, and ourselves, for.

Monday, May 02, 2005

Beauty and the Beast

All three of us are sick with a cold these days. My daughter started it, and she's generously shared it wih both my husband and myself. She has been so fitful and changeable. I know she's feeling miserable herself and doesn't know what she wants, but my being sick too doesn't help me to deal with her very well . And today it's just she and I, as my husband is off at work. So, the two of us are trying to cope with each other. It was really hairy there for a little while, but it seems things have calmed down for the moment. Hopefully we won't have too many freakout sessions today.

So all this craziness is making me appreciate what a good little girl I have MOST of the time. It's because she's usually so sweet, happy and even tempered that her recent illness-induced behavior has been so hard to deal with. For her first 3 or 4 months of life she would scream every evening for hours. There was nothing we could do for her during these bouts to calm her down - it was just her time to let out the frustrations of the day (it is so tough to be a new person in this big, crazy world, after all). But otherwise, she's been a joy. She's slept through the night - waking only once for a midnight feeding - since 2 weeks old. And I think it was between 2 and 3 months before she was truly sleeping through the entire night.

She's always napped well, for the most part. One adjustment we had to make was to have her nap in her playpen in the living room, as opposed to taking her upstairs to her crib. This is because I am home alone with her at least 1 day of the week, with many other weekend days also landing her in my sole care (my husband is constantly busy doing home improvement projects on our 100+ year old home), and I was not able to carry her up the stairs to bed myself. So she got used to napping in the darkened living room, and my husband and I got used to quietly tip-toing around for the 1-2 hour time period. It was the way it had to be and worked well for us. It was only weird when friends or relatives called or stopped by during her naps, as we had to all whisper and tip toe around. But as soon as she was old enough to climb the stairs (as well as climb out of her downstairs playpen), we moved her nap time to her upstairs crib. And that's were she's napped for almost one year now.

Well, she has justed toddled up to me and declared "I'm all better now, mommy." It just may be a good day after all.

Exceptional Parent Magazine
published an article I wrote about my experiences with pregnancy, labor and child rearing as a disabled woman. This magazine is a wonderful resource for parents with disabled children, and they liked my viewpoint as the disabled parent. My article can be found in their September, 2004 issue, which I've linked to on the sidebar. There you can see our picture and at least read the small blurb about my article, unless you subscribe to the magazine - then you can click in and read the text in full.

Sunday, May 01, 2005

Work With Your Doctors, For Yourself

I've already recieved a few emails and comments on my blog, so I thought I'd take this opportunity to answer some questions.

To Jeanette - My husband and I had a fair amount of difficulty conceiving, but it didn't get to the point of having to visit a specialist. After almost 1 year of trying, I did finally resort to an ovulation prediction kit. And after about the second month with that, our daughter was conceived.

I've heard from other women with similar stories of difficulties, either with conceiving or convincing their doctors that they are able to go forward with their plans of pregnancy. I'm wondering if the level of spina bifida that a particular woman has plays a large role in these issues? I've had a "specialist" view my spine X-rays (without ever having personally met me) and say "well, she's obviously in a wheelchair, right?" I've never been in a wheelchair (except for some post-surgury recovery times). So my point is, even doctors may not always have the right answers, or they may make quick judgements based on how they think a person "should" be, not what the person is actually capable of/strong enough for. I believe only the person herself can know what kind of a experiences/challenges she is up for. (that's for you, Angela). Doctors can and should guide you along so you can make the best decisions for you, but do take the initiative to be a big part of that process.

My husband and I discussed ahead of time - between ourselves and with the doctors - what kind of difficulties and challenges we may face - whether we had a "healthy" baby or one with some form of disability. My husband also knew ahead of time that, without a doubt, he was going to have to be a very hands-on daddy. I know that discussing these issues ahead of time was very beneficial for us and our situation.

With all this being said.. the experience of pregnancy, and especially the day to day care of an infant and all the lifting that's required (especially once she gained a little weight) has done a number on my body. I have chronic lower back pain like never before and my upper left leg almost always goes numb after standing and walking on it for even short spans of time. Thankfully, I've been going to a chiropractor for about 5 or so years now, and that has really helped me. I've visited my neurologists and orthopedic doctors about these issues, but they can't find anything particularly "wrong" to fix. The best remedy I've found is a cheap drug store back brace. It doesn't completely eradicate the pain, but it does alleviate it a great deal.

So to all women with spina bifida striving for motherhood/pregnancy - know yourself. Know what you feel comfortable with. And work with your doctors to achieve your goal(s). The end result of having that adorable little bundle of joy to love and raise into a good person is what should really matter most. So whatever means by which you need to resort to get that wonderful gift, go for it with all your heart! It is SO worth it.