Happy Halloween!

Boris thought this was really idiotic so participated unwillingly, but I'm a mean mother and always choose photo op over what my kids want, ha ha.

Joss also went to a Halloween party on Sunday. There are a lot more young children in our area than we knew so it was lots of fun for all. Joss watched the magic show, ate pizza crust, kissed numerous children, and even went through the haunted house with only one yell and then a loud laugh. At the end there was a costume parade with all the kids walking around the block. She loved it all and got a small pumpkin to take home at the end, as well as a gift bag that contained, among other treats, a little medallion on a ribbon. She's been wearing that necklace all day and carrying the little bag on her arm. Just the happiest day for a little girl.

The Experiment

Sometimes I feel like I'm experimenting with motherhood. With Joss.

I have the books that tell me what to expect, what to do, what they think, what you should think, how much babies should eat, drink and sleep. My bible has been the book on babies and sleep. It saved my life. Or at least my sanity.

But like every mother, I know my child is unique. She doesn't always fit the patterns and so I turn to experimentation. If she doesn't sleep now, what about later? If she doesn't eat here, what about there? If she won't use this toilet, what about that one? I tinker with the proportions and equations, but still can't come up with the right answer.

I ask other mothers, I stalk the Yahoo boards, and I run it all by poor John. I don't think he cares much which method of parenting we use as long as I change back from the witch I've become, and his daughter stops hitting and yelling.

Joss has been having a hard time napping this week. I don't think she's quite ready to give up her morning nap, because after she screams for 30 seconds, she falls immediately asleep for 45 minutes. But it's not long enough and she wakes up screaming again. The same thing happens in the afternoons. On usual (read: good) days, it's 90-120 minutes each time and she wakes up smiling. Be assured that this will happen starting tomorrow or some day soon, and that I will find something else to fret over. She is ever-changing.

But the lack of naps is ripping into her nights. I hear her sobbing and calling "Ma" softly. So so softly. When I check the monitor, she is still. It's a dream but she is calling for me. Then, a few hours later, a scream and then "MA!" When I run in, she is standing and screaming, but she calms and relaxes immediately when I enter the room. It's freaky, because when I pick her up, she instantly becomes limp and is nearly asleep and smiling. She just needs the security, and while I am honored that I can provide it, it would be more thrilling to witness a giggle in her sleep. I have yet to see it.

My "bible" says that after a few days of losing sleep in naptimes, she needs to go down early at night to make up for this loss. I try and try, but oh, it's so hard to let go of her. I mean to and I mean to, and I just want a few more minutes of her playing, a few more minutes of cuddling in the rocker. A few more minutes. She is irresistable.


But because she is tired, she hits when she hears something she doesn't like. This one is tough. We're working on it.

She orders me with her "Ma!"s. She doesn't call me, she orders. So we're working on this too. Joss's language comprehension is terrific, so when I say, "Please say my name nicely," she does. The sweetest of "mama"s. It's not her first instinct, but she can change. Again, a work in progress.

Her new trick is to spit out her food. Not spit actually, just let it dribble out of her mouth after chewing and rolling it around. And now it's happening with milk. I cursed her sippy cup for dripping, only to watch carefully and see that she was sucking the milk into her mouth, then dribbling it out and laughing. I'm hoping this is a phase, so while trying to discourage it, I also think it might just be a sensory experiment for her and she should be allowed to go through it. I just wish the dogs would clean up the fruit she spits out. They'll do the chicken, cheese, veg, bread, almost everything else, though. I'm grateful to them.

But she's growing so while I complain about the eating, I truly have stopped worrying. She's into 6-9 month size now. Sort of. It's actually still kind of big, but we're getting there.


I got her a few outfits in this size and they're all a bit too big for the time being. For this month. My expertise in parenthood is nil, but I do know one thing and that is, that she will grow.

And despite all these crazy and convoluted efforts of mine, Joss is turning out, for the most part, to be a lovely and happy girl.

She loves her stuffed animals.


She loves her bags.


She loves her bracelets.


Joss wants to hug and kiss every baby she sees. And to her, baby is anyone under the age of 5. She reaches for every child, then leans in to kiss their mothers.

At playgroup, she is the one baby that every mother and every nanny must hold and cuddle. No child leaves without a few kisses and hugs from Joss. I used to wonder if she wanted everyone to love her, but I see now that it is that she loves everyone. Without question, she is a loving person.

So if you hear of the perfect parenting book or method, please let me know. Until then, I'll keep on experimenting, though I'll never know if this beautiful child is due to what I'm doing or what she's doing.

I rather think it is Joss. She's the one experimenting with being a daughter, a princess, a human being. So if this is a success, let's chalk one up for Joss.

Isabelle

So, she's into week two after the bone marrow transplant and woo hoo! there are white cells in her blood! Not only that, but the critical germ-fighting white cells called neutrophils. Her ANC (absolute neutrophil count) they are hoping will get to at least 500. A thousand would be better. It's up to 340 already, so the news is encouraging.

She's had some problems with her two central lines, so one was removed and she had an IV in her hand. That had problems, so now it's in her foot. But her counts were good enough that she was able to leave her cocoon of a room for a bit. Only to the nurses' station, but hey, that's pretty great news.

Her sister's been able to visit and when she's there, Isabelle's blood pressure goes down. The very best medicine.

Apparently, Isabelle's hair has nearly totally fallen out, including her eyelashes. She rubs her eyes and has bruising because of her low platelet count. But we get photos every few days and to us, she looks beautiful.

Miracles

They happen every day. We've just forgotten to notice and we rarely rejoice over them.

Joss discovered she could push herself up to stand. "MOM!" and then she showed me what she could do. Butt up in the air, push off with her hands, and then clapping and laughing. No sunset or sunrise or star shower has ever been this beautiful.

She can sit on the footrest of my drawing table and calls it her "jeh!" (chair). "MOM!" Joy overflowing.


She learned she could sit with a foot tucked underneath herself. "MOM!" and when I looked, a wide-opened mouthed "O" as she reveled in the fantastic new position.

"MA!!!" Rising up and down onto her toes. Over and over and over again. That meant she could see a tiny bit further out the window.


Our bodies are miraculous. And once we get past a certain age, I think we forget. We focus on the imperfections or the pain or the things we cannot do anymore. We dismiss all that we have and can do. If we could have the joy and discovery of a baby, even for a day or an hour, we'd certainly give more thanks for these always perfect bodies of ours.

And today, John and I were given a new miracle.




Her walking was a bit better than this without her props, but at that moment, we (yes! John was there to witness) had our jaws dropped and our eyes flooded with tears. Walking is a miracle. (She's holding her fairy wand from LaLa and her bin of shea butter. And then, yes, she is drinking her milk, and yes, in the future walking with food or drink will be a no no but it was too amazing for me to watch.)

There are miracles all around us. Just stop and take a look. Even a smile given to you so freely, a smile so full you want to wrap it around yourself. It would keep you warm forever. Is there anything more miraculous?

Climbing

Joss threw her ball over the footrest of my drawing table and was able to retrieve it herself.

Lucky Girl




What little girl doesn't dream of having a protective, doting older brother? Especially when he comes with a lovely and loving girlfriend/otherhalf?










Joss's big brother, Brad, came to see her this weekend along with our delicious Stephanie. I somehow managed to miss getting pix of Steph and Joss, but did get a couple of Brad with his baby sis.

I love these pictures and they say it all. Joss is a lucky girl!

Petting Zoo and Party

We all had a big day today.

It was nice, so after a good morning nap, she had her snack ("nak!") outside.


After that, we went to a petting zoo at a local nursery. Joss loved the animals. She kissed several goats and got a few in return. She wondered they were dogs. You can see her signing "dog." The sign is snapping fingers - her version is fingers moving against her thumb.





There were pumpkins.


She rode on Daddy's shoulders. She did this last week and could barely see over his head, but she's gotten stronger and can hold herself up now.


And she walked a lot. With Mommy or Daddy, but lots of exercise all the same. She was unstoppable today.




Later, we went to a playgroup for neighborhood kids, where she played and played and walked and walked. She was the smallest and only non-walker, so practiced even more, mostly when the balls from the bubble pool were thrown out. Joss was obsessed with picking them all up and putting them back. Everyone else was tossing them out, she walked to pick them up until she was satisfied that all was clean again. Lots more exercise and fun for her. Lots more hunched over, Neanderthal-style walking for Mommy.

She played on the slide and looked at the world from a few feet higher.


She'll sleep well tonight. So will her parents!

Happy Baby

Who was it that wrote just a few days ago about the frustrations of parenthood? Was it me? Because I am the proud mother of a lovely, happy baby. At least for today.

She has decided that books are wonderful. It's still rare that we can get through a whole book, but we try several times a day with many books at a time, and she remembers now which books are which and where her favorite parts are.

She'll even look at her books by herself, reading quietly. The quietly part is key, because she chatters constantly otherwise.

She knows where every dog in the neighborhood lives and asks "daw?" when we pass. If she doesn't see him or her, she barks. Yesterday she practiced her siren sounds and alternated them with leaf blower imitations. At times, she will just shriek to see how loud she can be. It's ear-shattering, but the joy makes up for that. Almost. She nearly deafened her father this morning as he carried her on his back, her little head too close to his ears as she screamed out her happiness.

I haven't been teaching her as many new signs, thinking that she's beginning to talk, but in fact, she isn't speaking clearly yet and so still needs her hands. I used a few new signs the other day and she grabbed onto them immediately, thrilled to add to her vocabulary. I think it's probably more important to her since her somewhat slow mother can't understand all of her speech yet.

Joss loves bags. "Baa!" She hooks them over her arm or over her shoulder and carries them around. She puts her treasures in them and takes them out. She can spend a lot of time with a bag and was so happy when I gave her a new purse (new for her, old for me!) yesterday afternoon.


In fact, Joss loves anything she can put her wrist through, bracelet-style. My hairbands are the best and she puts them on and admires herself.

She can take off her own shoes and socks, and works at getting the rest of her clothes off before bathtime.

She helps by bringing us our shoes when it's time to walk the dogs. By handing us the dog leashes. By taking off or putting on her own bib.

We spent much of yesterday laughing. Over what, I'm not sure. Joss sometimes laughs just because. And so, so do I.


She even practices a fake laugh and that sends her into real guffaws. (I wasn't sure why she'd do something so odd until I heard myself in a little fake chuckle. Oh well...)

Today, she found she could sit on the footrest of my drawing table.

This was apparently fabulous. "MOM!!!" And then the most thrilled laughter. She was able to stand up from a sit as well. Her abs and legs are getting stronger and stronger and though she hasn't taken any more solo steps in the past few days, I'm afraid, oh so afraid, that she's getting closer to that run.


Dancing can't be far behind. Right now, we do it with her in my arms and she loves it. When she's on her own two feet, I think we'll have not only a happy baby, but a happy mommy with a happy back.

Isabelle

Isabelle had her bone marrow transplant yesterday. I'll excerpt a bit of her mother's email update:

Everything went well today. The stem cells arrived this morning and the lab prepared them for an afternoon infusion. By the time they washed out all of the other cells and got things ready around 3:00 p.m., Isabelle received about a tablespoon of stem cells which had kind of a reddish-orange hue. A tablespoon of new cells that will, God willing, populate her whole bone marrow system after circulating through her blood during the next couple of weeks. A tablespoon of second chances. A tablespoon of hope. A tablespoon. AMAZING. I'll never look at a measuring spoon the same way again.

Isabelle continued on her punky way today with only a few smiles. Craig came around 2:30 p.m. and spent the afternoon and evening with us. We got her to smile a few times, but most of the day was not that happy for her. After the infusion she slept quite a while into the evening, and had a few episodes of mild shakiness and low blood pressure. The next few weeks will continue to be difficult for Isabelle as her body limps along without white blood cells and with the aftereffects of the recent heavy doses of chemo. Among other problems, she can expect severe mouth sores that will most likely keep her from eating. Those should pop up any day now. She's also going to need blood products and more. She is actually receiving some red blood cells right now.

In some of the reading we've done, bone marrow transplant survivors refer to day zero as their second birthday. I can see what they mean--it is the beginning of so much healing.

(photos courtesy of Craig Bright www.crbright.com)

New

You can't quite see it yet, but I can feel Tooth #5. Yay. It's on the bottom, I think generally the top teeth come in next, but Joss isn't one to go by the books.

And she got her first real shoes. Size 2!

Love this tiny butt!

And this, this is the face that I both love and fear. Full of impishness, it's pure Joss.