Now with its own blog!We attended a lovely wedding last weekend and love was all around. My son and another little boy had a wonderful time together. So did all the children there. My husband captured this brief moment. But it was just one of many. It truly was a wedding of hugging and love.
I was horrified to learn my boy was wearing shoes a size too small for him and yet he learned to walk anyway. What a hero! So we set out to buy him new shoes. They must be flexible, cushioned and most importantly shoes, he'd wear. My boy cares about two items of clothing: shoes and pants. He'll rip off disapproved choices in a hurry. But shoes and pants he likes are a dream.
We're still in the honeymoon phase of walking. Little T loves to carry things to me. Anything, a stuffed animal, a sock, whatever. Just so I can watch him walk down the passage carrying that thing. Little legs go straight up and down. A toy soldier's march. Not yet the proper gait of a real walker. I find it so endearing.
We spent most of Saturday shopping. We walked and walked and walked on a trek to find shoes for Little T and Special K. Who knew shoes would be so hard? Little T loved every moment of it. It's hard to believe he just started walking three weeks ago. I marvel at each new terrain he conquers. On Thursday, he scaled sand, but only ventured a few steps on grass holding my hand. Yesterday at a friend's party he strode confidently across the lawn. He still holds his hand high in victory sometimes but less and less.
He also wants my hand less and less. Occasionally he grabs me firmly, and I must follow. But most of the time he walks off. He never looks back. I must follow after him.
At the park on Thursday a little girl threw sand in his eyes. He cried and cried. I scooped him up, terrified. I examined his eyes closely. The tears washed the sand away after thirty seconds. He sniffed and pushed me away. He wanted to get up and play walk again.
When we go to other people's houses, he just walks off now. I must go find him. At this age, my daughter used to come back for a little hug and a sit in my lap. A little warmup. He's off as soon as he can. Sure, he smiles when he sees me, but if I try to hug or kiss him, he pushes me away with a soft annoyed grunt.
Now don't get me wrong. He's a very cuddly guy, but at sleepy time, naptime, story time. All times when he doesn't have shoes on. These shoes are made for walking.
Pat Bentar sang "Love is a battlefield." She must have been singing about Special K and Little T. Special K call this "a battle." "I just decided to do a battle that day." They playfully wrestle all the time together and hug and laugh and laugh. Here's the video proof.
Special K said "What about me?" So here I give you two snippets from her star performance at her holiday preschool sing.
For every song she sang like this with her heart in every note, faithfully miming every motion to every song. She might have a career in show business. Do you know who Shirley Temple is? I think America's ready for a Eurasian one, but alas these are among the only two where she faces the camera most of the time! ;)
Here's my wonder boy's first day of walking. He still walks with his arm held up in victory.
His hair looks so funny from the chemo. We call it his old man look.
Little T's bone age said he was between 1 year 3 months and 1 year 6 months. Chronologically he's 2 years and 1/2 month. This means his growth is indeed delayed. In the strange world of Little T land, it's a good thing, because it means he won't be a shrimp and explains why it took him so long to walk.
We're going to see an endocrinologist on Monday.
On the bright side he started walking on Saturday. He can walk household distances. On his first day he could already turn, pivot and squat.
Sorry I haven't been posting much. I have a cold and bad allergies. Everyone had health problems in September including my cats. Even my daughter got sick. I needed a bit more support than this blog currently provides.
Now as least my daughter got over her flu. My husband C is slowly recovering from his pneumonia. My cat Mori seems to have recovered from his respiratory infection. My cat Sephi has lost weight, and may have hyperthyroidism, but tests showed that she was on the high side of normal. So I'm going to wait a couple months. If she's still losing weight, we'll test her thyroid again. If it's still the same, we'll look for cancer.
Imagine my surprise when I found a photo of me and five other of my Silicon Valley Mom bloggers on the front page above the fold. They're launching their new style section with us! It features a huge photo they took of us Silicon Valley Mom bloggers over the summer and an article written by one of the founders. Congrats on your MV Voice fashion debut, Tekla! :)
Article is here without the huge photo.
If you want to see the photos, you can download the MV Voice as PDF files
Front page
Style section
The irony is that no mention is made of me in the article, because I wrote nothing about fashion or style for the blog. I missed the Nordstrom's show and I've always had an strange relationship with fashion. In college, I was asked to be a fashion model in NYC, yet I find shopping for clothes sheer torture. I sorta feel obligated to write something now. What do you think?
Being total nerds, we're keeping Little T's food diary here on blogspot.
http://littletfood.blogspot.com/
Little T's GI doctor called us. To make a long story short, he shares our concern that Little T isn't growing.
Little T's weight and height have been basically flat for months and I've been concerned. Nice and proportional at 60% and a few months ago, one could argue the chemo or steroids were retarding his growth. However, he's been off chemo since May and on a very low dose of steroids for two months. He looks like a year old. Okay, he has the head size of a two-year old, but frankly all little kids have huge heads.
The doctor ordered a bone age test. I was all ready for general anesthesia like all his other tests. No, it's a simple x-ray. Hooray! If it's normal, my boy is just destined to be a pint sized fighter. If it's abnormal, he goes to see an endocrinologist.
We also have to keep a food diary.
We saw a very nice doctor today, and I don't think I liked her just because she had an English accent. She really took the time to explain things to us. I had to go too, because C couldn't talk for more than a sentence without coughing.
She explained C had viral pneumonia, not bacterial pneumonia, and that's why it wouldn't show up on the x-ray. She gave him medicine to stop the coughing and help him breathe easier. Needless to say not coughing all the time and not being able to breathe was weakening C. His O2 stats were 95, not hospital worthy, but not normal either. Normal is 100.
I'm so relieved. Much of my worry was because C was not getting better. But after just one dose he was able to go about without coughing unless he exerted himself. Now the trick is to keep him resting so he heals. Best news was she said he should get better in a week IF he rests.
When we got home, we had our longest conversation in days since C could actually talk ... in bed.
On Thursday night my husband C "blacked out" (his words) and a very kind friend took him to Urgent Care while I stayed home with the kids. Urgent Care said he was dehydrated and gave him IV fluids. Ironically my cat received the same treatment earlier in the week.
Urgent Care thought he had pneumonia as did his doctor on Tuesday. However, his chest x-ray on Tuesday didn't show pneumonia and the preliminary results from the x-ray on Thursday pneumonia didn't show pneumonia either.
Today he'll have been sick for four weeks. His breathing and coughing are worse than ever. He still has a low-grade fever and night sweats. The antibiotics his doctor gave him don't appear to be doing anything. We go to a different doctor today.
I really don't know what to think. Mostly I try not to think about it too much. My recent experience with illness that lasts longer than a few days hasn't been good.
My husband was just diagnosed with pneumonia.
Ironically there's a possibility my cat Mori may also have the cat equivalent of pneumonia. We must wait and see.
Special K wrote her entire name for the first time today. Of course being a Silicon Valley kid, she has been able to type her name for several months.
She also just discovered the meaning of puns yesterday. She asked me "Where do cows go to have fun?" Answer: "The moovies." When I explained her how this was a pun and why, she gave me THAT look, that look which I'll prolly see a lot of when she's a teenager, "I know, mom." she said. Last month when I tried to explain puns to her, she said "I don't understand." I'm steeling myself looking forward to many years of puning ahead.
I know that the term friend is stretching it a little for a two year old since he treats everyone about the same. He smiles hugely at them. He'll look them in the face and talk to them. It's even odds whether the words will be English or his own special language. Then later he grabs their stuff.
And then on top of that, he has an older sister who says she has "so many friends" (her words)
Of course we have to play with them, or she tells me "[X] isn't my friend anymore, because I never see her/him." Yes my daughter knows the exact guilt-inducing words to get me out on a playdate.
But sometimes I feel my son could really use more playmates nearer to his own age. Yesterday at a park he and an eight-year old boy were wrangling over a plastic spoon. My son won, because the eight year old just felt too ridiculous fighting with a boy, the size of a one-year old, who was yelling loudly. My son typically deals with older kids and this technique works for him almost always.
I want my son to learn that while it's good to hold on to your stuff, but you can't win all the time with this technique, nor is this a good way to win friends. His friends hold tight too and they just walk away holding the toy triumphantly.
I just realised I had the same concern about my son last year. And then he had another relapse and secondary infections and even if he'd gotten more friends, he wouldn't have been able to see them since he was immunocompromised. And I'm not sure where in the past three months of actually being able to see other people, I can it all. And I thought maybe this is just a proxy for my worry that it's been so long since we've been out in the world that I've forgotten how to make friends. And maybe my son actually doesn't care that much as long as we see people.
At age three he'll go to preschool (if he manages to stay off chemo and steroids long enough to get his shots). I worry he'll get picked on, because he's small and grabby. Maybe I just need to get out more and stop worrying so much.
I know I was an opera lover when I was almost moved to tears by the plight of a mother who accidentally threw her own child into the fire instead of the child of her arch enemy. Not something I'd condone in real life, but in the opera it all makes sense.
One of the many ironies of my life is that I decided I could "only handle two kids". Then nature had the last laugh and gave me a kid who's so much work. His list of medical needs, therapy appointments and developmental exercises take up hours a day. And that doesn't include the fact that he's not walking at almost two and has various other delays, so we have all the typical baby stuff too.
He's also the happiest person I know. I laugh with him every single day. I find myself drowning in cliches. But he really is like the super sweet smiley cancer child you see on tv, bravely enduring chemo and other noxious procedures. At least as long he gets his own way.
But while he makes it all worthwhile, it doesn't reduce the sheer amount of work. I dunno how I and my husband do it. I dunno how any parents do it, except one thing at a time. Sometimes when I think of the sum total of what my son needs and what my daughter needs and what I can do, I start to panic, and feel totally bad and inadequate. In fact in many ways I have battled and overcome these need to do it all and be the perfect mom at the same time as my son has battled his medical issues. It helps a lot that my son is so sweet about his illness. But like my son, I have these little relapse and setbacks.
But the biggest lessons I've learned is outsourcing. Yeah a Silicon Valley term. This is Silicon Valley Moms blog. Before my son I totally underestimated the value of outsourcing. One of the best things a friend did for me in the midst of one of my son's medical crises was to say "Thida, you REALLY need a break." and take me out.
But before my son, I'd get stuck on guilt. Sure I'd take time off. But in my heart, I believed moms must do every aspect of motherhood, and never take any time off or I was a BAD MOM. Well okay if I had work, I could do a little less, but not really. I had to be there for everything, do everything.
I still encounter this attitude all the time. I see moms who are totally stressed and overwhelmed to the point where they no longer enjoy their own children. When I suggest they might want to take some time off, other moms chime in like I'm crazy for suggesting it. In my experience, the more work your children are, the more necessary breaks are. When I come back from a break, I come back refreshed and I appreciate my children ten times more. My children also appreciate me for about five minutes, then they go back to taking me for granted again.
Sometimes outsourcing means hiring someone, but outsourcing can also mean old-fashioned swapping with other moms and babysitting from grandparents. I do have a nanny because like I said before, my son is just too much work, and we can afford it. I also swap child care of my daughter with a couple other moms.
According to my mom, a wise Burmese woman, this "need to do it all" is a)Western thing since most women outside the West don't raise their children in houses as a couple, but rather in an extended family and b) a phenomenon of the past century. In the past, even in the West, people lived in extended families. People other than moms help raised children. Everyone acknowledges single parents have a tough job, yet somehow the two-parent family is supposed to be sufficient. With all my son's needs, I need more help than just my husband can provide.
Perhaps some moms never need a break, but that doesn't negate the fact that others do. Nor does it mean that the parents who need breaks love their children any less. This is not a question of love, but of parents' capacity to give and children's demands. Some children are more demanding than others. Some parents have more energy than others.
Mom work is very undervalued and not paid at all, but it can be very hard. Let's help each other. I rally you all to outsource mom work! Moms who have more energy and/or less demanding kids, if you see a mom that's stressed and overwhelmed, tell her it's okay to take breaks. If you live close enough, offer to exchange babysitting. Moms who are stressed and overwhelmed, please ask for help, so you can enjoy your kids again. You'll be a better mom if you do.
Crossposted to Silicon Valley moms blog
"What was your favorite part?" Special K asked over and over again on the way home.
My favorite was watching Special K and Little T laughing and laughing and exploring everything.
But Special K asked the question, because she really wanted to say "My favorite was watching the otters bang the ice against the glass." We watched the sea otters feed. Towards the end they were given rings of ice with fish buried inside. So they had to crack the ice to get at the fish.
Many of the Monterey Bay Aquarium exhibits are at Little T height, so he pulled up over and again and cruised around, even taking a few steps to see everything. If it weren't so far away, I'd take him there all the time, because it's great for his physical therapy.
We also got stamps for our Special K's Official Explorer passport. Special K got a poster for collecting 4 stamps by visiting various booths. If we get obssessive visit a lot of different places by December, she can earn 30 stamps and get a sweatshirt. But I think we're going for 20 10 stamps. Must not get obssessive. Must not get obssessive.
Yesterday was the kind of wonderful day I'd always hoped to have when I decided to have children. Now that's not to say that these days are so remarkable. The amazing thing I find about both my children is that they are essentially happy.
I want to say despite the medical issues that rise and fall in our lives, but that's my deal. They seem a lot less affected in general. Special K says in a matter of fact voice "Well sometimes [Little T] goes to the hospital and sometime he doesn't."
Right now I'm not living under the constant shadow of life-threatening disease, but it's left its mark. I was never a worrier before, but now I've become one. When he gets a fever, I worry that he will have to go to the hospital. Okay, so far we're only one fever not going to the hospital versus four fevers landing him in the hospital. But when he got a fever on Friday night, I didn't take him to the ER despite the hemo doctor's recommendation, because he started playing. The ER is so germy. It's a great place if you're coding, not good if you're immunocompromised. Then he got better. So I guess I'm not so paranoid in that respect.
Today he has a rash all over his back and my first instinct was to worry and call the doctor. His doctor was on vacation and the other doctor who has seen him wasn't available today. Then I thought "it's just a rash." He doesn't have a fever. Sure he's whiney. But he was sitting around waiting for me. He hates waiting.
I used to be essentially happy also. And yesterday left me feeling more like I could be again. I see a long tunnel and happiness at the end. But I could never be happy worrying that my son's life was in danger. And I was miserable for months.
To be honest, I'm not sure if I believe that he won't be in the hospital again. No one can tell me if Kasabach Merritt will return or not. They guess it won't, but they've been wrong before. My son's tumor is particularly aggressive. I get different answers about how much the drugs affect his immune system and how vulnerable he is to the nasty secondary infections that landed him in the hospital before.
I wrote this because sometimes I feel this pressure to be happy, to be in my old life. Writing this all out helped me see it's just part of where we are right now. And it's okay. I do really enjoy the joyful moments with my children, but then worry returns.
I guess I'll live with worry a little longer. My worry level has definitely gone down too. I used to go up to code blue and actually take him to the doctor or ER and find out that yes indeed he was really really sick. Now I just worry a bit he might be seriously ill, but don't actually take him anywhere. This is in fact an improvement. As the months go by, I hope my mother threat level will go down further.
