Pretty Awesome

Anna managed this all by herself today:

She actually figured out how to pull up with only one hand and one leg. Pretty awesome. She even "cruised" from one piece of furniture to another, balancing on her leg cast and using her arm cast to bear weight on yet only holding on with her left hand. I can't believe she did that. It makes me a little nervous because she isn't strong enough to hold herself up with one arm for very long, and sometimes she goes face first into a toy.

Sadly, she got her first black eye today. Good timing, too- the day before her birthday party! Ah. I wonder what strangers will think when they see a baby with two casts and a black eye. Yikes. It's a horrifying thought yet I have to see the humor in it :)

Two Weeks Post Surgery

It's been two weeks since Anna had her surgery. It feels like an eternity as it's been one of the hardest weeks to date. Warning: this is not a warm and fuzzy post. Read at your own risk.

She wasn't showing much improvement- actually she was having multiple daily meltdowns yet was still on the same dosage of around the clock meds. We concluded that the medicine side effects were likely a big culprit so we tried weaning off her some off the narcotics. That helped some, until the rash took over.

We have been battling a nasty rash that flared up all around Anna's cast. It spread to everywhere the cast borders her diaper area and then disappears into the abyss of her cast. Sensitive skin + hot days + enormous cast (see picture below, before the rash) = really stubborn skin breakout. We're doing the best we can to contain it, which involves blow drying each area after a diaper change, letting her crawl around on the kitchen floor with no diaper for a little while, then applying medication and stuffing multiple layers in her (two diapers and some batting), plus keeping her indoors out of the heat. So yeah, it's pretty much a part-time job working on this rash. They told us if it doesn't improve, we will have to head back to the hospital to have her cast removed and another put back on. Since we only imagine trauma ensuing from pinning Anna down for yet another long procedure, we are putting all our effort into getting this thing to go away.

That said, she has been up crying all night for the last few nights. Of course we aren't able to pinpoint exactly what is upsetting her since there are multiple things going on. If you've ever had to listen to your child suffer like this, you know how awful it is. I believe it was 3am last night that Ben and I were sitting on the closet floor with our head in our hands.

Because I know you are dying to join in the fun, I've created a new game. It's called:

                                                                      Guess What's Bothering Anna?

It's easy. You just spin the wheel, and you have as much a chance of getting it right as we do!

There have been some happy moments despite it all:

 

Despite the frustrations, a lot of things about our situation are keeping it from being even more stressful. Here are some blessings I'm thankful for:

• By far the biggest one: Ben is on his most laid back rotation (research) which means he can be home half-time (even if he has to be doing work for much of it).
• She only had to have one of her legs amputated (many people have them both done).
• Her constipation appears to be resolving (check that off the list!)
• Amazing friends to visit with and help take my mind off going crazy. The ability to get out from time to time since Ben can stay home with the Bean.
• That I am a stay at home mom. I can't imagine working and dealing with this at the same time!
• Warm weather which makes Anna easier to dress.
• Five sweet, sweet care packages that have been much fun to receive (the pre-surgery one from Sarah, one from my church small group, one from Anna's Mother's Day Out teachers, one from my parents-in-law, and one from my sister in Boston) plus lots of emails and notes with loving words.
• Five meals thanks to sweet friends.
• Anna is at least eating some.
• A birthday party on Saturday.
• My two friends, Katie and Sara, who have gone through the same surgery with their little ones. Talking to them keeps me sane, as well.
• The Hunger Games is out this weekend!

How to talk to someone with a disability

Over the past few months I've thought a lot about how I and others react to people with disabilities, or people who are "different." I've done a lot of soul-searching on the issue, taken notice of other people's reactions, and come to some personal conclusions. I haven't dealt with reactions too much yet- though I have definitely dealt with it, even more so now with Anna's in-your-face casts. I do know it will be something we experience more of in the future. Let's face it, a child with one foot is not exactly common.

I've thought about how I used to react to people when I noticed they were different- different in a way that grabs your immediate attention. I, like most people, would be curious and maybe look at the person but try not to make it obvious. It's our human tendency to be curious. I think this is how most people respond. If you happen to be with small children who are more blunt about their thoughts ("Mommy, why does that person have____"), you might tell your child to be quiet up and stop asking questions or push them along out of earshot. Of course, there are the less empathetic people who will make outright rude comments, but the majority follow the above patterns.

Let's be honest. That whole let-me-stare-but-pretend-I'm-not thing? Yeah. It doesn't work. People know you are staring. And it doesn't feel so great. It actually doesn't bother me personally, but I'm a Mama Bear and I know it will when Anna is old enough to be affected by it. I used to be the person who would try to indiscreetly stare, but I've changed my ways:

Several months ago, I walked by a man at our church who sits outside with his severely mentally disabled daughter. He holds her, often while she writhes and groans. We are new to the church and it's rather large so I don't personally know the man. At first I was curious about her but I didn't want to be "rude" (or so I thought) so I did the usual and tried not to look or draw attention to them. But when I thought about it, pretending like he wasn't there was pretty rude in itself. I realized I was reacting this way more for my own comfort, and then telling myself it was to be "polite." I asked myself, "how would I want to be treated if that were my daughter?" (always a good question to ask). I would want you to talk to me like a human being. So I went up and sat next to him, talked to his daughter, and then asked some gentle questions. We talked for a long time, and he was clearly eager to talk about his daughter, which made us both feel good. We ended up encouraging each other on towards the Lord, and it was the best moment I'd had in a long time. I learned a lot from this.

I can't speak for anyone other than myself, but I think most people just want to be treated like people. I would rather you ask a question up front then whisper when you think I won't notice. I would rather you give your child an honest answer or even turn it into a teachable moment than shush them up and tell them to be quiet. Sometimes you can't always pretend like the elephant's not in the room. I understand your curiosity. I just want you to approach it differently.

I know people won't always react the way I would like them to when it becomes clear Anna has one foot. I know people will say and do hurtful things at times. But if it were up to me, people would look me in the eye and ask "How did she lose her leg?" instead of staring or avoiding eye contact. They would say something like this to their curious kids: "It looks like she lost her leg somehow. Maybe there was an accident, or maybe she was born that way. It looks like she can get around real well and do all the things you can do with that leg! If you want to ask her Mommy about it, you can, but don't forget your manners." Maybe that is idealistic but hey, this is a blog. I'm allowed to be idealistic.

I guess this qualifies as a "preachy" post. I must be due for one of those right about now :)

Lastly, I recently came across this tidbit in a Dr. Sears book (I think it was the Christian Parenting book) talking about fostering empathy in young children. When he mentioned people with disabilities, particularly a man with one leg, it made my heart skip a beat:

When a child notices something different about a person and brings it to your attention, turn it into a teachable moment. Suppose you are in the supermarket with your daughter and she says, "That man only has one leg." Don't just hush her up and tell her not to stare. Make a point of acknowledging what your child has seen, and share some insight. "Yes, I see, and he uses a wheelchair to get around. I bet that makes shopping a challenge when he has a lot of groceries to buy."


You can normalize awkward situations with your insight and teach your child important values about acceptance and empathy: children need to learn that people with disabilities are just like the rest of us (they go shopping, too) but that they do have challenges to face (being in a wheelchair).


Studies done by Drs. Janet Strayer and William Roberts found that the more empathy a child feels for another person, the more similar that person seems. "When we are empathetic with somebody, it makes our dissimilarities seem similar," says Strayer. How you talk about people being "handicapped" or "disabled" affects how your child thinks about them. Teach your child that people with disabilities are people first. They are more like people without disabilities than they are different from them.


Well said, doc. Well said.

The First Week

The first week is wrapping up and while I can't say it's a whole lot easier, there have been some happy moments. Anna learning to get around despite her cast, enjoying the good weather and her brief good moods, and spending time with Ben. She is still uncomfortable and not ready to decrease the pain meds yet (which we learned the hard way) so she is still taking them around the clock. She's not eating or drinking much and is generally cranky, but I would be too if I just lost a limb! Some cute pictures and a video from today:

The Big Day

Anna's feeling a lot better and she's been taking some good naps, so I have a little time to write about the last few days. I generally write in fragments because that is how I think, and we all know I'm not the best writer (even less so when I'm tired) so I apologize if this is hard to read!

I didn't take any pictures the day of surgery and only a few the next day, but I did want to take some to remember the event. Because while not the happiest of days, it will remain a big day in our lives and in Anna's. 

Here are a few pictures of Anna before the surgery, on our way to the hospital and in the lobby. Happy girl as usual. Crawling and climbing everywhere.

We had pre-op Monday morning and that's when we heard the bad news about the casting. We thought about calling off the hand surgery, but decided to keep going with it. It has definitley added significant challenge to Anna's mobility and ability to entertain herself, but it is what it is.

The next day we were at the hospital bright and early. Anna charmed everyone as usual.  It was hard when the nurse took her back. I looked away and choked down a sob, but I didn't lose it. All the nurses and doctors around made it easier to remain collected. I knew she was in good hands.

They gave us a Build-a-Bear ticket which was right there at the hospital, and that was a fun way to spend some time. I listened to a lot of worship music, too.

We received updates every hour or so. They first told us she went down without a whimper, which was a huge relief. Anna is a fighter and I pictured her clawing her way through the gas portion, but that wasn't the case. The surgery went as planned and took about three and a half hours. We weren't able to be with Anna until an hour after surgery when she was moved into recovery.

The first six hours were not that bad. Anna was groggy and fussy but didn't seem to be in any terrible pain. She couldn't really move and the waist cast keeps her from sitting up so we walked with her as much as possible in our arms or in the Medi-wagon.

It's very difficult to go through surgery with a non-verbal child. They can't tell you whether they are in pain, hungry, thirsty, tired, or uncomfortable. We had to guess by trying everything. When she would be extra fussy we offered her food, water, a nap, comfort, pain meds, etc. It's exhausting. Really hard. She was consolable for only short times the first 24 hours. She barely slept but a few hours at night. It was hard for her to be in that hospital bed with nurses coming in every hour to pock and prod her, despite how wonderful all the staff were. Anna hated it. She was connected to so many machines and hates any sort of restriction with a passion!

We also had some problems getting the pain meds working and that was the most difficult thing to go through, more than the surgery itself. We hated seeing her in so much pain. The second day when she was still in significant pain they agreed to try a new medication and thankfully it helped her sleep. After that she was a new baby. We saw her smile for the first time that day. It was brief, but wonderful. We hadn't seen her smile since the surgery, and I felt like we had broken her spirit. She had been so sullen and downtrodden.... when visitors or other patients would talk to her or smile at her she would cry. She didn't want anyone to come near her. She is still acting very distrustful of anyone other than Ben and I. I think she is afraid they are going to poke her, make her take medicine, or take her away. This breaks my heart. She used to be so happy to see anyone and everyone. I pray that she becomes trustful and happy again.

Here are some pics after she got some sleep.

The first picture of her looking more normal. She was playing with her bandaid and had a content expression:

She can lay on her tummy but can't move anywhere yet. She's not able to move at the left hip.

Once she got some sleep and wasn't in pain, they gave us the okay to go home.

She's on a rotation of meds around the clock and has been sleeping and eating better now that she's home. She gets frustrated that she can't do the things she used to do, and that is heartbreaking. But we'll get through these next six weeks. I'm so thankful Ben has this week off, though he was told he has to make up the hours next week (really? have a heart now...).  Changing her diaper is hard, and so is finding clothes to go around her arm cast. I cut one dress down the seam to get over her arm, and some of the sleeveless dresses she can easily wear if the weather warms up. Dresses will be our best friend this month.

Mostly I just try to keep my mind focused on today, not tomorrow or four weeks from now. God's grace is sufficient for us right now, and that's all that we need.
 

His mercies are new every morning.