As a reminder...

...to myself. Right now:

the boys still are obsessed with sticks, dirt and putting sticks in dirt. Fighting with sticks and dirt. Flinging dirt with sticks, and all other combinations of those two items.


Right now we are still on a massive Dinosaur Train kick. It is the only show they watch. (Though recently I sneaked in an episode of Mr. Rogers to see if it has equally sedative properties. It does. He was such a good guy...)


Right now Cookie still wants to take cello lessons. He tells me so every other week. It makes me cry when he asks to watch youtube videos of cellists. And busts out his "cello." This fall we might just have to go here.



Right now meal times are still very difficult for some of us. Then I find a half eaten pie. This particular child gets dessert despite having not had dinner way more than is acceptable by any decent parenting standards.



Right now she is still the ring leader of zany games.




Right now he still is the lover of all things "ball." He says it more every day than any other word. Do not think about taking away a ball when he's playing with it. Or will he throw himself on the ground and use his patented Insta-Tears Technique to bring his Mama running, and then you will hear Did you take that ball away from him? Give it back right now, you know you are not supposed to touch that when he's got it, do you hear me, go get another ball right now, go kiss your brother and find the darn ball!




Right now we are still working on turning this space into a room for our girls. It's kinda nice to have something to do while we wait for a court date.


Right now it is still chick season. It's not too late. We are working our way through this book to see if we can actually "do" chickens in our yard. Because my kids need more chores. And to have less gunk in their food. And I've always wanted to live on a farm. And we don't have enough going on over here.

Right now it is time to wrap up and work on some Village Thread orders. I love sending out packages, midnight sewing, and the quiet. Right now, I love the quiet.

Mother's Day Cringe

"I am so grateful God trusted me enough to let me be a mother..."

This phrase is the reason why I wince and cringe on Mother's Day. I overhear it at church, sometimes even from the pulpit, I overhear it at the park or mall. Folks tend to be grateful every day for our lives that someone bore us, brought us to this earth, even at a subconscious level. Those of us who are raising children are deeply grateful for the honor of being called Mama.

But what I think about on Mother's Day is that millions of women around the world do not get to raise their children because of death, poverty, or because they wish to conceive and cannot. And all I can think about are the well intentioned women in the Mom Club who are grateful to have this sacred, wonderfully difficult and joyful role in their family and society, but somehow believe God has trusted them enough to do so.

If God bestowed motherhood based on levels of trust, I am fairly certain he would not start by removing children from loving parents' homes or prohibiting loving couples from conceiving. I think he would start these days by delaying ovulation in women until, oh, let's be generous for the sake of the argument, age 18.  Or perhaps he would start with making sure women who were addicted to illicit drugs or were sociopaths destined to harm their children could not conceive. Doesn't this sound ridiculous?

God doesn't systematically deny prison inmates, drug addicts, teenagers, or in other words, women who might be considered untrustworthy on paper - children. He doesn't dole out children to those who deserve them or because he trusts we mothers more than our baby-less sisters. This means: I did not live my life more worthy than any woman out there who has been unable to bear or keep her children.

Motherhood is generally not a merit-based system.

Tsega's, and our daughter's mothers are no less in the sight of God than I. Our biology and what happens to us just is what it is. Yes, I believe God can heal hurts, fix things in our bodies that previously could not be fixed. I believe in miracles. There are a few lovely women in the Bible who desperately wanted children, and had to wait a looooong time for them. I see them as good women who wanted to be mothers, and it so happened that God wanted them to be in his own time. It wasn't that they finally "earned it." It was what it was. I believe he planned it for them, but not because they were untrustworthy until the point they conceived.

I believe I am blessed to be a mother. I am terrible at it sometimes. I am humbled that I am raising four children (with two more on the way) and that I am accountable to God, the children themselves, society and for some of them, their first mothers in the way I teach them and love them. I am glad that the children I have to raise are mine and I do feel God's hand in who has made it to our family and the timing in which they came.  There is no doubt in my mind that that God doesn't let everything fall to chance. I believe he cares deeply about how families come together. I am not trying to imply otherwise. I guess what I am saying is that on this Mother's Day, like the past several, I will honor my mother, and the mothers that would be, that aren't. The mothers who's arms are aching for someone not there.

I honor them tomorrow. I get "mother's day" every day. And I don't deserve it any more than anyone else.

HELP Seeking Solutions for Fruit

I already sent an entreaty to Facebook. But now I am asking you blog readers. I bought these three baskets. They are large (as you can see they take up much of our diving room table). I want to create a three tiered basket stand thing for my kitchen island. I've seen them online. At stores. But they are too small. They hold like five apples and three bananas. We buy an obscene amount of fruit every week. And I am a snob who doesn't like to refrigerate the pears or tomatoes not to mention the grapefruits, oranges apples, avocados and bananas.

So I need this. And I need someone to tell me how to do it. I need to learn how to weld or solder or something crafty. I have asked Google and he has been no help.

So I am asking you. Do you have an idea about how to get these stacked? With know-how of execution? I am not afraid of a blow torch.

Anyone who can help, or send anyone to this blog who can help me create the basket of my dreams can get paid back with something custom from the Village Thread store. A skirt? A super hero cape? Something you want but don't know how to make? A custom pillow case? Help me help you help me.

Love,
Desperate Seeking Welding Advice

Regressions and Conversations

The kids are wearing me out lately. I will admit, we were doing well, at least, in my flawed memory we were. Then we went on vacation. And we've been fighting for stability ever since. The boys' therapist have been taken aback. They see the regression. The fighting and the rough housing and the violence and the not listening and poor self control and poor regulation and mess and the tantrums have been a little out of control for me. I am tired. And crabby. 

When people perceive I am worn out by the current four sometimes they gently tease "So are you ready for six??" I don't know what to say. The answer in my head is Um, no.

But then I want to ask Is anyone ever ready for six? Is anyone ever ready to add to kids to their family who have lost their first family and are forced to go live with strangers who don't speak their language?

Not ready. At all. And really hoping they like to hit a lot less than the boys in this house, but realizing that they very well could find hitting a perfectly reasonable activity, just like the boys in this house.

Sometimes, I'd like to invest in a stockade. Just so I could station it in the family room and make a proclamation. Hear Ye! The next child who touches another child in anyway, or bares teeth at another child, or threatens another child shall be made to do a time out in the stocks.

Today, I am choosing to see their sweetness and funniness and kindness. Today I am trying to be positive. Today I wanted to document some of the lovely things my little ones have said recently, because, whew boy. I mean, looney.bin.

Samantha, if you could go anywhere in the world right now, where would you go?
That's easy Mom. Ethiopia. 
What would you do there?
Go see my sisters right away.
Oh honey, wouldn't that be great?
Yeah, if I were on Sesame Street, I would ask Abby Caddaby to use her fairy wand and poof me to Ethiopia. But we'd need a spell.

How about this: Right now we want to go somewhere, to Ethiopia and POOF! us there! 
Good one, Mom!  




Mom, Sissy says she is gonna take one of my lemurs!
Huh?
When I grow up and have pet lemurs Sissy says she is going to take them. But she can't, they are mine.
Honey, would don't you think you'd rather have a turtle or a mouse?
Only lemurs.
Well, they live in Madagascar.
I am moving to Madagascar. You can come. I will have mamas, daddy and baby lemurs all in my house. How many plane rides will it take to get to Madagascar? It's by Africa, maybe two?
I think three probably.
K, that is long. I will wait until I am big.



Kids, let's go around the table and say something we are thankful for. Tsega, you first. What is something you love?
Opia!

Samantha?
Daddy!

Cookie?
Yummy food. And Mama.

Brady? 
Dada



Mama, look, I pretty like Sissy! 
Tsega, you have a goose egg from running into the window, drool all down your shirt, cowboy boots, head band and a skirt. 
I pretty?



Brady, are you being raised in a barn?
No.
Will you take your foot down?
No.
When did you learn how to say 'no?'
No



For the cherry on top, let's end with last night's prayer by Samantha.

Dear Heavenly Father, 
Thank you for this amazing day. Thank you for our family.
Please watch over our sisters. Help them be safe. And happy. And help our paperwork to go
smoothly. Help Mom and Daddy to be able to travel there soon so we can bring the girls home.
Please bless their mom. And please bless Tsega's family in Ethiopia. Please watch over all the families of all the Ethiopian kids we know. And help them to be happy and OK...


Yeah, I am feeling better already. I have the best, if rowdiest, kids on the planet. Gonna go shop for the stockade.

Call a friend. Capture the normal

Most of us tend to remember to bust out the camera for birthdays, or trips some place new and exciting, or when friends and family are in from out of town. But how many pictures do we have capturing the unremarkable, normal moments? How many of us have pictures of us interacting with our children in those everyday moments?
 
The other day I saw my friend doing what she does every day: hauling her little man around in a sling, while he eats, watching the world, and soaking up her love, smell, touch.


Canon 5D Mark II 2.8 L 24-70mm  f/5 1/320s ISO 320  Color saturation tool, slight exposure correction to brighten, sharpened image with MCP Sharp as a tack action and that is it.

When I showed her the above picture, she was elated, moved. She didn't have a single picture of her carrying her baby like this, the way she did every day, because she was always the one taking pictures. And it had never occurred to her to ask someone.

Her handsome man was considerably less appreciative of my efforts and stopped a moment to tell me to get out of his face.


My unsolicited photo tip of the week is, even if all you have is a camera phone, next time you are with a friend, take a few unposed pictures of her with her child.  Whether she's nursing, wiping a tear, rolling up their too-big pants, kissing a skinned knee, helping into a chair, it doesn't matter. But someday that picture will be amazing. Because that child won't want kisses or help. And you captured more than just a normal moment. You stole a moment of motherhood and preserved it.

Participating in

Play to heal

I don't play. I am terrible at it. Getting down on the floor and really playing with my kids, remembering to be silly has been almost stricken from my capabilities. I can read to them, sing to them, lead activities, teach them, but really play? Every time I try, I twitch with the To Do list hovering around my psyche. More often I let them play with each other and pray I have enough time while they are entertained to clean up the broken lamp shards and spilled carton of yogurt before something else is destroyed.

But I am trying to get back in the habit and I am finding it very difficult. Why am I trying to start? Besides just the whole "want my kids to feel loved and get attention and be intentional and engaged" stuff, which is really good stuff, one of my kids is winning the prestigious If You Scream Again I Might Actually Die Award. This award changes hands in this house every few months and I bestow it with love and a headache and a feeling of defeat.

I am reading a lot more about how to disarm the crazy fear in kids that freak out all.the.time. Sometimes, when they are so far gone in deregulation you can't calm them down. You can't teach them, you can't use logic, that part of their brain is gone. You can't do anything but wait for it to pass and try to not make it worse.

But there is one thing, a last ditch effort when kids won't respond to soothing words and hugs and time ins or outs or losing privileges: Getting silly. Being ridiculous and so goofy they have no choice but to lighten up. Watch what on earth the crazy lady is doing. Maybe start, in spite of themselves, to smile.

These therapeutic play moments may seem so trivial to some of you but for me, the moments were profound, which I suppose shows you how out of practice I am at playing, but I wanted to share two things I tried this week when the IYSAIMAD Award winner and his runner up were tantruming. These two things stopped the downward spirals and prevented really really ugly rages.

1) I quietly sat down near him and dumped out a box of band aids and started humming while I put them on me. One on my hand. One on my arm. One on my face. I said Oh I have an owie!  He got quieter. He watched. He took a step towards me. Then another. And then asked me to help put some band aids on him. I almost shed tears at the symbolism. Me putting band aids on hurts I can't see. Right der Mama, right der. We played doctor for a few minutes until he was calm enough to be OK with the fact that he couldn't have the entire jug of orange juice to take upstairs to the play kitchen. We breathed, we talked. He let it go. Instead of me snapping No you cannot have this or anything else in this kitchen for the love of all things holy please stop screaming in my face please stop touching everything... I just sat. And pulled out some band aids.



2)  Another scream fest was happening. I looked around for something, anything. I found two unlikely accomplices: a horsey and a hippo. I sat as far away as I could, not talking to the child, but instead, playing out loud with the animals
ooh, Hi horsey, you have pretty tail and mane. i wish i did.
thanks Hippy, you are fat and lovely. do you live in the river?
yes Horsey. want to come see where i live? 
Oh yes, let's be best friends. 

At this point the crying had slowed and he was listening. Then Horsey and Hippy on their way to the river found his toes.
Ooh, look at this lovely grass, it is so delicious! Hippy and Horsey nibbled at his toes until he started to laugh. He danced around while they were confused about where the grass went. They shared the meal, complimenting each other and the lovely day.


It was a minor miracle, if there is such a thing: I disarmed the fear and anger. He was laughing. Moment over. Bomb defused. Pleading, begging and lecturing and exhorting doesn't work sometimes. Playing, however, could get used more in this house to heal, share smiles, and send love. I have so much work to do.

Do you have any favorite Moment Saving Techniques? Do you play? Please share!

Life and Times of a 28 Week Preemie (with g-tube talk)

Quite some time ago I wrote a like-titled post to talk about the challenges and joys of my 28 week preemie. That post gets hits every day from people searching for info on 28 week preemies. So much has changed since I wrote that post, and I thought I'd give a little (or massive) update.


Brady is 22 months old. He flies under the radar a bit in our noisy house and somehow, simultaneously, he shines in a crowd. He's magnificently funny and quirky and gentle with a wild naughty streak. How does a 28 week preemie fare as he approaches two years old?  Doctors originally suggested he would "catch up in no time." Not true. He has not begun to "catch up" actually. At one year he was more like a six month old. His developmental gap between him and other kids his age actually widened over time. Brady will be playing catch up for at least another year. Likely more. 

If you met him on at the park and watched him play, you might guess he was about 16 months old.  His wonderful personality, his ability to communicate, have emerged very slowly. At the same time, it is amazing how much he can communicate.  But you have to be patient. You have to give him space and time to to tell you what he wants, what he's thinking about.  He is not a squeaky wheel. 


To help him get over some hurdles, Brady has three Early Intervention appointments a week. Speech therapy, occupational therapy and physical therapy. Brady has somewhat low muscle tone, reacts somewhat thoughtfully and slowly (except perhaps when seizing an opportunity to do something really naughty like throw a full bowl of oatmeal all over the dining room, then he is like greased lightening).  His development is scattered, in some ways his cognition is amazing, for example socially, he is close to his actual age. He gets playing chase, playing cars, how to kiss a dolly, climb up on the couch and sit on his brother's face to tick him off.  In other ways, like his speech and communication and mobility, well, that's why we have the therapy.


 His magnificent OT

His greatest challenge as an infant, the one that kept in the hospital for so long at the beginning of his life was eating. He could not eat enough to gain weight. His suck was poorly developed, his hunger and suck reflexes all but non existent, and he did not actually cry out loud until after he was five months old. He was almost mute. It was like he was locked inside himself in some ways and it was hard to meet his needs.


Recently a social worker and friend who was a lifeline to me while Brady was in the NICU approached me about reaching out to another family with a baby in a similar situation as Brady was.  I wrote them a fast but furious email attempting to sum up the process we went to get our baby out of a hospital and home with his nutty family.


I am documenting this long email here, in the hopes it reaches another family who does an internet search for feeding issues in preemies, 28 week preemies, preemies with g-tubes, g-tube vs. ng tubes in babies, etc. Those searches land folks on this blog frequently, and I hope this post is helpful to them. So while so much of this might be mundane to the average blog hopper, or old news to my regular visitors, I am hoping this reaches a niche audience: a group of mamas and daddies who are looking for answers about their preemie.


1) Building a case to address this feeding problem and get Brady home, in other words, getting a surgeon to finally place a g-tube was a hard fought battle.  Few doctors want to do surgery, which in general is a good thing. Cut last is a great motto. But sometimes, it is necessary and at the time, it felt like a very parent-driven decision.

2) It was the BEST thing we could have ever done for our son, and I think surgeons who balk and families who are scared of it are potentially missing an important piece of the puzzle for certain babies. Brady didn't end up getting his g-tube until, oh 47 or 48 weeks, ? He hadn't improved his suck or oral intake in two months. That means he was ready to come home except for his ability to eat, and that was the only thing keeping him in the hospital.  There were many doctors willing to let him continue to live there instead of being home with a family just to "give him more time and wait and see."



3) Brady had his ng tube pulled on three or four different "hunger trials" to see if hunger would somehow kick his sucking reflexes into gear. He actually was sent home from the NICU for one of his hunger trials. To "really see." This never worked. This is getting even more specific, but if one is a New Englander, I would avoid Children's Hospital like the plague if you have a preemie. (Pause. I am waiting for lightening to strike. I just spoke ill of Children's.)

It was my experience that they have so many very very sick kids that they inadvertently blow off  kiddos like a gestationally 45-week-preemie who almost eats enough to gain weight but not quite. They sent Brady "home" saying he was "fine," except he didn't go home; he went straight back to another hospital where he continued to not eat enough to gain weight or stay hydrated.  Honestly, when he was at Children's was the worst week of my life.  They poorly recorded my son's nutrition intake, they didn't pay attention to him when I wasn't there, they didn't note who fed him or if that person squeezed the bottle down his throat or if he actually was awake, alert and managed to suck and swallow all by himself.  They didn't return my calls. Don't go there if you don't have to.  Mass General is our hospital of choice. Their ped surgery staff and floor is stellar.

4) The good news is that after all the difficulties, all the hospital time, therapy, Brady has completely and utterly overcome his feeding challenges in every way. There are challenges he will have for the next few years but eating will not be one of them. We have not needed to use his g-tube since before Christmas, we are working with nutritionist and pediatrician to make the case to have it removed. Go Brady!

Ultimately, I believed the g-tube saved my kid, and it saved our relationship because I didn't have to squeeze bottles down his throat while stressing and counting droplets of milk. I didn't have to force feed him ever. I didn't have to deal with him or his siblings yanking out an ng tube all the time.
 
When he came home from the hospital around 48 weeks with his g-tube, he didn't cry or give hunger cues often, and he didn't have the strength to get bottles down. For months after the g-tube was placed he could only get 1, 2 or 3 oz down at a time. And I would top him off manually in his tube.  I was
nervous he would grow to rely on the tube, never get to where his brain would kick in and be able to eat everything he needed. But that couldn't be further from our experience. 

Nitty gritty of how I used the g-tube: I never used a pump. I did not hook him up to nutrition overnight while he slept. I made him work hard for his food.  After every bottle, what he didn't get down after he was done was put in his belly. Sometimes, he was so upset or deregulated he couldn't get his suck/swallow to work (look at where he was a year ago!) and after ten or twelve minutes of very little progress, I'd help him out and just put it in his belly. But I always wanted the milk to go in while he was hungry, while it was "meal time." Sometimes I even put a few oz in his belly while he was still working on the bottle so his brain would associate getting full with sucking.

 I don't know if my methods helped his eventual success at eating, but I sent the pump back to the medical supply company the day I got it and never used it once. It was important to me to use the g-tube as a way to help him, not replace his natural ability.

His hunger reflexes have kicked in, and the boy completely throws a fit when he sees food. Wanna see him hungry while I attempt a photo shoot? He can sign "more" and cry when hungry, sometimes yells Baba!!  Woo hoo!




He loves to eat solids and we've worked with OT to help improve his tongue and cheek strength. He now drinks bottles by himself and from a cup and is getting better from a straw.  He is not a picky eater. He doesn't have issues with textures of food. He eats very very spicy food without problem. He eats all variety of fruits, veggies, ethnic food, you name it, he eats it.

It has taken a lot of work, but I think the g-tube bought him time until his brain and body could learn to eat.   Since he lived in the hospital for so long, and because he had an infant brother competing for my attention, I have always wanted our time together to be happy/bonding time. And that is what the g-tube gave us. Less stress. More bonding. The g-tube let me teach him how to nurse.

A side note, the nutritionist/feeding therapist sent to us by way of Early Intervention when Brady came home told me that she had just done a seminar at Children's Hospital Boston telling them about babies like Brady who aren't eating well, should not just "go home." That it actually does not help many of them. Basically, she assured me that the g-tube was a good move and that he really did need it, I wasn't being a lazy parent as some doctors implied.


To end this long post I wanted to reassure parents out there stuck in NICU limbo that there is light at the end of your tunnels, but it might take way longer than you think to find it. You might have to jump tunnels. Find different doctors. Don't be afraid to fight for your kid. And someday, he will be running around stealing blankies from his brothers and telling you "No!" when you want to change his pants. Someday he will run into the room where you are, slipping and sliding in footie jammies and yell Mama! and chuck his bottle at you and laugh while you chase him. Someday he will give lean in when you say Kiss? and show you he finally knows what the word means. Someday he will color with a glue stick all over the newly mopped wood floors and run away with a grin when he's caught, and you may let him get away with way more than you should because he is a special miracle. 

You will think of all the nights under the bili lights that you couldn't hold him. You will remember crying as he writhed in pain from the c-pap. You will remember those gosh dang O2 sat alarms going off whenever you held him because even being touched was causing his body to freak out, and you will know that you survived.  He survived. He is amazing in every way. He's stinkin' perfect.

She came. He's done

On the eve of his fourth birthday, my sensitive, sweet lover of a three-year-old surprised me.

I want to be ready tonight. I want to do it for real.

I smiled. Are you sure? Do you really want the paci fairy to come take the pacis away and give them to babies who need them? 

Yes, I can do it. I want to see what present she brings me.

I typed up a letter with his help. And he brought out his stash, smiling, tip toeing with anticipation.


He did it. He felt big. He felt brave. He woke up twice but didn't ask for it once.



I cried a little bit because I was so very proud.

And he woke me up in the morning exclaiming Mom! She came! She brought me a LEMUR FROM MADAGASCAR AND A FOX! THISISTHEBESSSSSST!



She came. He is done.

This is dedicated to all the parents who are mortified that their 18-month-old, 2-year-old or 3-year-old still needs his or her paci. If you want it, I am granting you permission to let your kid have his comfort object until he is ready to let it go. You don't have to fight it. You don't have to make him cry, beg, go through nights of insecurity or screaming. If you want to get rid of the thing at eight months, that is fine, I support you, but if in your heart you know your child isn't ready yet, and maybe even you aren't yet, don't let anyone make you feel bad about it. Because I speak from experience twice now, when the child is ready and with encouragement and months of prep work, makes a cognitive decision to let the pacis go, the pride, sense of accomplishment, and confidence about the entire transaction is awesome. I give you permission to know your child better than the books or even pediatrician (gasp!)  Because books say if you let your baby sleep with you, or heaven forbid, nurse himself to sleep, come age 16 he will still be in your bed hogging covers, robbing you of intimacy with your spouse. Books don't know you. They don't know your kid. So here is my permission to ignore them. Not that you need it.

Paci gone. No tears required. All he needed was time. {sob sob, sniffle.}