Bath time

I starting bathing Kiana on my own once she was able to sit-up. That is when we moved her baby bathtub from the kitchen counter to the bathtub. Then when she started standing in the baby bathtub I decided it was time to ditch the baby bathtub (7 months) and bathe her in the regular bathtub.

Now she wants to stand and walk around in the bath so I find it easier if I just get in the bath with her. My husband still has to lift her in and out of the bathtub for me.

My Husband...

Is the most amazing, wonderful man. He is an awesome husband and daddy. I could not do this without him.

Tim has amazing patience and is so humble and self-less. He does so much in caring for Kiana, probably way more than a typical full-time working husband. He changes diapers, feeds her, gives her baths, trims her nails, dresses her, gets up in the middle of the night when she wakes up. He does so much to help me with her.

I believe Kiana and Tim will have a special bond as she grows up. He loves his daughter and me very much. I am very grateful for him and I love him.

Crib and Pack n Play

Before we bought a crib I did a little research on ones that had been adapted for people with disabilities. I found one where the front rails were hinged so you could swing open the front thus easier access to the mattress, but it was like $800 and there was no way I was going to spend that much money on a crib that she was only going to use for less than 2 years. I also looked into bassinets and co-sleepers, thinking one of those might be easier to get her in and out of, but she was only going to outgrow those anyway and would still need a crib. So we just bought a regular crib with a drop-side. Someone else was just always going to have to get her in and out. (Although, from 1-3 months she slept in a swing every night because she liked the rocking motion and would sleep better..)

Once Kiana falls asleep on my lap my husband has to move her to the crib, but from the time she started standing I’ve been able to lift her out. I place a chair next to the crib, drop the side down, and lift her up over the side and onto my lap. From there I can get down off the chair and onto my knees to carry her, although now that she is walking I just put her down on the floor. Sitting in the chair helps for balance and so I can be level with the crib.

Getting Kiana in and out of the Pack n Play was a little easier. The Pack n Play was in the living room and I used it for when I needed to do some chores or take a shower. I would put a chair next to it, sit on the chair, ask Kiana to “help mama”, pick her up onto my lap, and then lift her over into the Pack n Play. To get her out I would sit on the chair, she would stand up, lift up her arms, and I would lift her up into my lap and then onto the floor.

During nap time, when I am home alone with her, she sleeps on pillows or a cushion on the floor. I have to keep a close eye on her because she tends to wake up very quietly and start walking around the room not quite awake yet.

Walkers

The first walker I got while I was pregnant. I thought that the extra weight and expanding belly would throw me off balance. Turns out I never needed it. Actually I had better balance during my pregnancy than I do now.

The second walker I bought was a Rollator. The kind with 4 wheels, brakes, and a seat. I strapped a booster seat to it and as soon as Kiana could sit up on her own (4 months) I used this to transport her around. This works great. The booster seat has a tray so it also serves as her high chair for meal time.

Unfortunately our place has a step up to the hallway that leads back to the bedroom so I’m never able to wheel her back to the bedroom to do things back there, but that doesn’t matter. I mainly just use it as a high chair, but since it is on wheels it is way better. I wheel it onto the carpet in the living room area so that I can kneel down on the floor to lift her into it. After mealtime I wheel her over to the sink, give her some Cheerios or a toy or book, while I do the dishes and clean up. When she was younger I would attach a mobile to the handles of the walker.

I must say though, I am blessed with an amazingly content, happy, independent child. Just yesterday she sat in there for over an hour without a fuss while I did dishes, cleaned the kitchen, and vacuumed the front room. She played with toys, read a book, jabbered away, while I wheeled her on and off the carpet and out of the way to vacuum, etc. She also loves to watch me vacuum and mop. Every time she just seems so interested.

The walker also helps to keep her in one place while washing her face, brushing her teeth, or changing her shirt.

"Help Mama"

At six months, or maybe earlier, I started teaching Kiana that she needs to “help mama”.

When she is in the crib, in order for me to easily lift her out, she needs to stand up and lift up her arms for me. Same goes for when getting her up into the high chair. I say “help mama” with the hope that she will stand up facing me (I am kneeling on the floor) and lift her arms so that I can lift her up into the high chair. I praise her and she claps her hands (so cute!).

I use “help mama” when lifting her onto the couch into my lap to nurse. Although, now she’s able to crawl up onto the couch on her own and position herself on my lap. As soon as she learned to crawl, if she wanted to nurse, I would go sit on the couch, say “come to mama” and she learned to crawl over to me thus “helping mama”. It saved me from picking her up and carrying her over to the couch. I also use “help mama” in other situations, like dressing her, or any other physically challenging task.

Of course, “help mama” does not always work, but I still want her to hear the phrase and learn its meaning. If she really does not want up in her high chair then I’ll just wait a little bit and try again.

Babies are adaptable and they adapt to their parent’s disability. Kiana and I work together to help each other.

Baby Slings / Carriers

I own four baby slings / carriers and I never used any of them. I bought them hoping one might work for me to carry and transport Kiana. I needed to figure out a way to get Kiana lifted out of the crib, move her to and from the changing table, and transport her from room to room.

Reasons they didn’t work for me:
1. I couldn’t even lift her to get her in it. Those first 3 months she seemed so fragile and I wasn’t coordinated enough to get 2 hands under her to support her head. I tried sliding it under her while she was on a soft surface.
2. If I did manage to get her in it she screamed because she hated it.
3. Ok, now she’s in... can I get it on me? no. If I can get it on, can I walk? no. I didn’t have the balance to walk with a 9lbs baby on my side or front. Maybe I can use a walker? But I don’t use a walker so why would I use one now?
4. Finally, even if all of the above worked out, the time it took to do all of this just to get her out of the crib and 2 feet to the changing table was just too much of a hassle.

So, those first 2 months, when Kiana was waking up 3-4 times during the night, my husband had to wake up to get her out of the crib, change her, hand her to me, and then lay her back down in the crib after she had fallen asleep. And then during the day my nanny was here to move her around.

I’ve heard of mothers doing chores, dishes, preparing meals, taking walks, etc. with their baby right on their side or front in the carrier. Kiana was just a baby who hated baby carriers. It didn’t matter what kind it was or who was carrying her. My husband wasn’t one to hold her much while he was busy doing something else either. She’s not a clingy baby that needs to be constantly held or picked up. And now, at 10 months, she’s very independent and good at entertaining herself while we are busy making dinner or doing chores. She didn’t get used to sleeping in a sling either. Whenever she would fall asleep on my lap she would be moved to her crib, otherwise I couldn’t get up, although I did love having her sleep on my lap and watching her while she slept.

It all worked out not using a sling. Kiana knows I’m not able to pick her up or carry her so she rarely asks me to.

Forced to just do it on my own...

In college I decided I wanted to spend 5 months abroad through an exchange program in Australia. I mean, who wouldn’t want to spend 5 months in Australia? But I had other reasons I wanted to do this. I wanted to prove to myself that I was fully capable of traveling on my own. As scary as it was, and even right up to the last minute I questioned my abilities, I wanted to take myself out of my comfort zone and throw myself into total unknown. It was one of the best experiences of my life.

And that is what I did that Saturday in May when I decided to not call a friend or the Bible College students for help, that I would just care for Kiana all on my own.

Sometimes you just have to be forced to do something to realize that you can actually do it. That I had to push through my fears, ignore my fears, to make things happen. It’s fear that holds us back. It’s easy to call a friend and take advantage of the help that is available but that help isn’t going to be there forever and eventually you’ll just have to do it on your own.

I miss my family very much, but I know, if they were here, that I would not have come as far as I have in caring for Kiana. Kiana was born a week early and so those first 4 days before my parents arrived we were on our own. We were nervous at times,, but at the same time it came all so natural. And there have been many times where I wished, and that it would have been easier, to have been able to just call my mom for immediate help.

Because we live so far away from family support, it has made the bond between my husband and I so much stronger. We have to rely on each other so much more, we are on our own out here. We both come from strong, close-knit families in whom we are grateful for their prayers, love, and support. And yes, we have a wonderful church and a network of friends here, but when it comes down to it it’s just us three. Not only is the relationship between my husband and I much stronger but our relationship with Jesus is much stronger.

I have been forced to tackle my fears head on and because of it I have become much more confident in myself and my abilities.

Mary Poppins

I knew it was going to be too much of a challenge to care for an infant on my own, that I would need help. That was not going to stop me from having children though. I had an absolute peace knowing that God would provide that help, both physical and financial. And when you put your total trust in Him, He provides more than you could ever imagine. I was totally clueless how any of it would work out, but I knew God had a perfect plan.

God provided a Mary Poppins, a nanny, several actually. Well... they weren’t real nannies. They had the role of a nanny but sure didn’t receive the pay. These were just women I had found through church, friends, and an ad I had placed on Craigslist, that were willing to lend a helping hand to a disabled mother.

I want to share the timeline of each “nanny” because it really is a testimony to how God works.

Prior to Kiana I had no experience with babies. None. So I really had no idea what kind of help I would need, what I could do on my own and what I couldn’t. My parents were here to help me for the first month. I had someone from church lined up to help after they left but when I contacted her a week before my parents left it turned out she had moved. Oh no! Now what? My husband was going to take a week off from work anyways to spend time at home with us so that gave me another week to look for someone.

I found another woman from church. I was still on maternity leave and didn’t plan on going back to work until mid-January. She came over in the mornings right before Tim left for work and was with us all day until Tim came home.

Our day: Tim would put Kiana in bed with me right before he left for work so I could nurse her. The “nanny” would then come in and carry her out to the front room. My “nannies” did everything I wasn’t physically able to do: carry Kiana, put her on my lap to nurse, move her to the crib when she fell asleep, change diapers, bathe and dress her. But I was always right there. I wanted Kiana to know that I was mommy and that even though I was not physically able to do the task, I was right there.

A week before I had to start work my nanny just quit showing up. It is a more dramatic of a story than that but I won’t get into the drama of it. One day we were confined to the bed until 1pm until I was able to get a hold of someone to help. This wasn’t SO bad because God blessed us with a very easy, happy, content baby so I was able to entertain her, change her diapers, and nurse her without her throwing a fuss about being on the bed for hours. I remained calm and it all worked out.

It just so happened that my neighbor friend had a week off and was able to take nanny #1’s place, thus giving me a week to find someone. I put an ad on Craigslist. God had it all planned out, but I’ll admit, I was an emotional mess. I didn’t know what I was going to do. I started to get depressed, wishing that I was just able to take care of Kiana on my own, I was in tears on the phone to my mom, my husband and I discussed every possible solution (one included him quitting his job and being a stay-at-home dad, but financially that wasn’t going to work.). My mom had decided to come, except there were no seats available on flights for weeks, so in the end she never came because I found someone 2 days before I started back at work.

Nanny #2 was awesome. She was so wonderful with Kiana and she was a perfect fit in our home. I went back to work part-time and nanny #2 would watch Kiana in the mornings in my home and then help me with Kiana in the afternoons until my husband got home. But I knew she was only temporary, that she needed and was looking for a “real” job. So I kept my ad on Craigslist.

Oh, I should also mention that two mornings a week I had two Bible College Students from our church come help me, free of charge from February-May. Yes, Kiana had many different people come and go in her early months, and sometimes I felt bad about it and worried that she might grow up with trust issues, but Kiana did well with each change and is a pretty social little baby.

Nanny #2 was with us for 2 months before I found someone else. Nanny #3 started in March. Again, she was only temporary and in May she gave me her week’s notice. I called my friend to ask if she could help out. My friend was a stay-at-home mother and had offered to help before. My friend was willing to come to my home and help out in the mornings and then when I left for work she would take Kiana home with her, but after her first day she called to tell me that her son was allergic to my cat and she couldn’t help me at my house.

I was at a loss. I cried, I prayed. My friend was scheduled to start on Monday. I was so tired of interviewing random strangers to find someone I could trust with Kiana and in my home while I was at work. Something I wanted to avoid at all costs was to put Kiana in full-time daycare just because I couldn’t take care of her myself at home. That would have made me feel like a real failure as a mother, having someone else take care of her. I understand full-time daycare if you are a full-time working mother, but I was only working part-time and I wasn’t about to have Kiana in day-care while I was at home by myself. I am so thankful I was able to find women to come into my home those first 6 months to help me. Plus, I wasn’t even able to get her in the car on my own to get her to and from day-care (I’m still not able to at 10 months).

The next day was Saturday, a work day for my husband, and I decided, to just try it on my own. Kiana was 6 months at the time, was sitting up, crawling, and starting to pull herself up into a standing position. (She developed very early for her age and I believe this is how God planned it because He knew I would be caring for Kiana on my own starting at 6 months and that it would be easier for me if Kiana was more independent, sturdy, and developmentally advanced.) Saturday was probably the worst day I could of chosen to be alone with Kiana because that was my husband’s longest day at work, but I was actually more nervous about being alone with her on a work-day because I’d be pressed for time and would also have to try to get myself ready for work.

I had 2 wonderful neighbors I could call on if I needed, but as it turned out, that Saturday went very smoothly and Kiana and I had a very relaxing day together. Yay! I could do this! And from that point on, I now take care of Kiana in the mornings and my friend picks her up before I leave for work and provides childcare out of her home.

My desire and prayer is that I can be a full-time stay-at-home mom and I fully believe that will happen all in God’s time. In June I got my hours reduced at work to only 12 hours a week so I am spending more and more time at home with Kiana. And I love it! But it is difficult for me, and some days I feel as if I’ve been beat up, and we are not able to leave the house so I don’t think, at this point it would be fair to either of us to be stuck in the house 40 hours a week.

I realize though it may only get more difficult, but only time will tell. As I look back on it all now I wonder why I ever worried, that God had/has it all worked out, even down to the last second. He will always come through. God is good.

Back Pain

I have developed constant back pain in my lower back. It started 2 months ago when we were visiting my parents. I don’t know if it was the long plane ride, sleeping in a different bed, or picking up Kiana, but it hasn’t gone away. Although, I haven’t done much to help it get better either. I haven’t been to the doctor about it, I haven’t been stretching or exercising, and I’m still picking up a 21 pound baby and she’s only going to get heavier. I don’t notice it much during the day. It’s when I’m laying in bed at night or when I have been sitting for awhile and then get up.

I have never had much pain due to my cerebral palsy... not even during pregnancy did I have any back pain. Years ago I was diagnosed with osteoarthritis in my knees, but I haven’t been bothered by that in years. So this is really, kind-of ,‘not fun’.

Knee Pads

A pair of soft volley-ball knee pads were the best $12 purchase. They have become an essential part of my wardrobe on days I am home alone with Kiana. I bought them in May, which is when I started caring for Kiana on my own, she was 6 months old. I am not able to hold and carry Kiana while standing and walking because I do not have the balance, but I am able to pick her up and carry her while on my knees. They also are useful just for when I am on the floor playing toys with her, or for chasing after her across the room.

Diaper changes

Within the past 2 weeks diaper changes have become near impossible for me. She won’t even stay still long enough for me to get the dirty diaper off. I’ve always changed her on a changing pad on the floor which makes it really easy for her to turn over and just crawl away. I’m starting to run out of creative tricks to entertain her enough to keep her there, i.e. blowing on her tummy, putting a toy in my mouth and barking/growling like a dog, pretending to sneeze, (all things that she thought was funny for awhile but is now old and bored by it), etc. etc... basically anything that made me look like a complete lunatic, but it got the job done, or giving her a toy to play with that she hasn’t seen in awhile.

The novelty of my cell phone has just worn off too. She has this fascination with anything electronic (she takes after her Dad in that respect): cell phones, remote controls, laptops, the X-Box controller. So last week I was allowing her to hold my cell phone. She pushes the buttons watching the screen light up and then fade. This would keep her entertained and laying on the changing pad well after her diaper was changed. I would then take it away, after some protest, to keep hidden away until the next diaper change.

Today I used the innards of the Glow Worm, just the white plastic box that holds the batteries, music box, and light. It had been taken out to change the batteries. It’s much easier for her to push the button then when it is in the Glow Worm. Kiana was so enthralled by it that I decided it would become my new distraction, so I hid it. She will push that button over and over listening to the lullabies and watching the enclosed light bulb light up and fade. That worked.

I must say though, I am becoming better at putting her in a clean diaper while she is standing. Something I never imagined myself ever being able to do. No where near an expert, but at least she’s in a diaper, thus protecting the carpet and furniture from any accidents. It takes awhile of chasing her bare bottom around and getting the diaper on a very wiggly girl to get it fastened. For me, when I try to do anything hurried I end up shaking, thus making the task 10x slower.

A couple of times I’ve had to wait until she is ready to nurse and almost asleep on my lap to get a clean diaper on her, doing this one handed.

Previously, and compared to now, changing a diaper was “easy”. I used a mobile over her changing pad for awhile to keep her attention. The first 4 months I didn’t change many diapers because I always had someone else around to do it. I wasn’t even carrying her at that time so someone always had to put her on the changing table for me anyway. I changed my first diaper when she was 7 days old. She seemed so fragile, and those diapers were so small.

We tried to teach her to help us using “bottom’s up”. We would say that to her while lifting her bottom to put the clean diaper under her. She did catch on and occasionally, when we said “bottom’s up” she would pull her legs up to her chest and lift her bottom. But now that phase goes in one ear and out the other. *sigh* Oh, well.

With that all said, I am hoping to have Kiana potty-trained before the age of 2.