Big Girl At School

Obviously we've been busy.  And I can only find time to write about this at 4:30 in the morning. Lucky for you, I can't sleep and you get to hear about my baby girl starting school.

So, this last Tuesday, the big yellow school bus pulled up to my house and I wasn't even ready for it. June was still eating breakfast. Her shirt wasn't even on yet, lunch wasn't in her backpack.  We quickly got it together, headed out the door, and I didn't even get to see her face as she sped away.  It all happened so very quickly.  But she came back, alive, in one piece, a little sweaty, and started circling the house like a bat out of hell.  She's taken a nap every day since then.  Day #3 I was able to capture this picture:

On Friday, I went to go visit her classroom for the morning.  Her teacher was absolutely wonderful, and comes from a background of working with profoundly disabled children in a hospital setting, so she has all sorts of tricks up her sleeve for June.  Surprisingly, June was the most developmentally delayed in the whole group, and quite obviously will be the most demanding and hard to manage.  There are two girls in the class and 7 boys (typical for special needs classroom).  Everyone else is verbal or somewhat verbal.  Everyone walks except for one boy who is in a wheelchair, but is extremely ambulatory and able to maneuver around in that thing like he's been doing it since he was out of the womb.

I have high hopes for June.  I've already talked to her teacher three times over the phone and she called me just today because they are doing "pudding painting" tomorrow and she wasn't sure if June could have pudding because it has milk in it (June recently went on a dairy free diet).  I quickly whipped her up some dairy-free pudding tonight to bring in for the special event.  June has also brought home a painting (done hand-over hand) and is very tuned in to the CD that was given to me as part of their curriculum.  She is loving music these days.  The letter of the month is "J" (in honor of June), the color is "purple", the theme is "bears".  June has a special chair she uses, but her teacher also told me she has been using her walker and it seems to be working out well, which we have also noticed at home (outside). 

Overall, I am really pleased with Norfolk Public Schools Special Needs Program and I am really glad I held out for the morning spot because it gives me time in the morning to prepare for this next baby, get paperwork in order, do taxes, shop for dishwashers, and smile at the clear, blue sky.  Besides, June still takes a nap in the afternoon.

June's Personal Assistant also started with us last week (Miss Kat). She is a personal friend of mine and is really fitting into our family nicely.  June loves Miss Kat and I am amazed that the state pays for me to have her around.  What a special treat. 

All in all, I feel at peace...at least for 6 (or so) more weeks.  Thanks for your prayers.  I can feel the love surrounding me like a warm Reese's Peanut Butter Cup Sundae. 

Check Engine Light

We took a drive last night and as my husband got in the car, he commented on how the friendly check engine light was on...and wouldn't it be cool if people had check engine lights.  Indeed.  I mean, imagine that.  You'd never have to set a boundary again.  Your light would just tell you that you were doing too much, or an emotion or feeling was wrong, or that you in fact, had the flu.  You'd never have to make an excuse again.  You could just say, "Sorry, I can't watch your kids, my check engine light is on." Or, "My light says I need to rest, so no, I can't make the party." 

In the past few years I've really tried to listen to the sounds of my body, and essentially, set boundaries...but my hospitality blood always creeps back in to the marrow of my bones and then slowly, I start doing too much, hosting too much, and saying yes to things because I feel guilty. 

And then there are those days where you say no to everything but God appears to be saying yes to everything.  Like your transmission in your family car keeps slipping and you know it's any day now you'll have to get a new one, like your sporty car has to be jump-started, like you walk into your house only to find the dishwasher has been running and flooding the kitchen and basement with hot water for ten days, like your renter still hasn't moved out over Christmas break even though he's been evicted, like your 4 year old won't eat anything (eagerly) except cereal these days, and you get a phone call from your doctor telling you your thyroid is low, which is probably the reason you've been crying off and on for the last two days.  And the list goes on. 

But thank God I have good friends who do things like send me encouraging texts, emails and phone calls daily, who supply me with meals because they know I won't be able to cook for weeks, who volunteer to physically pick up my 30 pound child for an hour or change her wiggly bottom so I can take a break, put my feet up, because, by golly I'm pregnant. 

Today was such a dichotomy for me...the good and the bad all rolled up into one.  I watched my kitchen get demolished while I sat crying with boxes around my feet that I couldn't physically move,....but, I also got to see old friends at lunch, eat dinner with good friends unexpectedly, and then (Hallelujah!) the absolute best part....I got to see June take her first steps in her brand new walker. 
This, is a good day.  Tomorrow we can deal with the toxic kitchen. 

Have bit off more than I can chew

My angel friend Kat asked me today if June was getting into things these days and I showed her a picture that pretty much sums it up:

I know you have one of these tupperware drawers.

This is good and bad as one with a child would understand.  On one hand you are rejoicing because your child is becoming more mobile and more independent, and on the other hand you are complaining that you have to follow your child around and lock doors and drawers you've never locked before, move plants, antiques and picture frames high, out of reach, buy childproofing devices you swore you'd never purchase because there would be no need for them, because, after all, you are a fair and firm disciplinarian. 

Needless to say I am not raising a typical child.  One jaunt to the beach and you'd understand that this little girl thoroughly enjoys chewing on sand and other leafy objects.  She is stimulated in a way only my therapists understand.  She doesn't make that icky face that a normal child makes after she's had a few mouthfuls, she makes that obsessed crazy face that says, "Give me more and I'll take any punishment".  Same with leaves, dirt, anything gross or gritty, really.  But her favorite is books.  She can destroy a book by eating it in about 5 seconds.  We only have one perfect board book left.

Iva June starts school on January 3.  I can't believe it, but I am actually putting my little baby who doesn't even walk yet on a bus, sending her off to school and hoping that she'll come back a little more knowledgeable, a little more social and a lot less obsessive.  I can't lie.  I'm entrusting her to the Norfolk Public Special Needs System, because I know they'll do a better job than me AND so I can have a breather for three hours a day.  Things are getting more and more difficult.  She is getting heavier and bath times alone are like catching a squirming, drowning 30 pound slimy fish who sometimes bites.  Meal times, if done correctly and therapeutically take an hour each.  She's supposed to wear glasses at least an hour a day, but since she eats those, I have to follow her around for an hour.  She needs to wear a hat (that she also eats) because she is boring a hole into the back of her head because of all the upside-down spinning she does.  She still poops four times a day and, throws up, on occasion.  There are at least 105 other therapies or "good ideas" that I'm supposed to be doing daily, but unless I hire a maid and a cook, that won't happen...and since we are also in our first, full-blown financial crisis as a family, I am officially wondering just what God is thinking.

So He told me and I'm banking on it:
"My God will supply all my needs according to His glorious riches in Christ Jesus." Phil. 4:19

Seeds and Guts

Favorite spot for both

It's 5:00 am and I can't sleep.  Maybe it's the snoring of the breathing child next to me, held tightly in my husband's arms, or the constant ongoing, swirling of thoughts all clashing in my brain, or maybe the allergies because I can't take all-powerful allegra and flonase right now, although I sneak it every once in a while.  I've been wondering...how are we going to fit another human being in this bed at night, in this house?  Will June ever be able to make it through the night without being awakened by her apnea?  These are questions only God knows the answer to, so I will wait and continue to take one day at a time while my belly makes plans and gets larger by the hour.

 

Designing

Today was a fun family Saturday.  The kind where we were supposed to do something akin to drudgery, but it turns out that the event got postponed, so we were able to, for once this week, be all under the same roof and be all harvesty about it.  After a leisurely breakfast of scones (thanks to my friend Bernadette) and eggs, and then a little cleaning and tidying, the boys set off to design their jack-o-lanterns.  You would have thought we were going to Busch Gardens by the shriek that came out of James.  

Ben gets ideas from the book, Play With Your Food

Guts were removed. Slime was explored.  We even found a pumpkin seed trying to spring new life inside the pumpkin already.  How very ironic.  Seeds were removed from pulp and pulp was removed from seeds, and then, attempted seed toasting occurred.  All in all, everyone was happy with their product.

And now it was off to the church Harvest Festival where James refused to wear his dragon costume, so he had to be a non-scary skeleton (thanks to Marmelade) instead.  Can you wear a skeleton costume in church? I wasn't so sure. I don't have a picture of it. 

The defeated dragon wishing he were out of his costume.

June ready for "vall vestible" as James has been calling it.

Straw slurping and busy hands

Today was a breakthrough.  June is 27 months and we have been working on transitioning from bottle to cup for at least a year.  In the process, there have been many tears, shaking of the head, spilled milk, frustration and GAS.  Yes, gas.  June writhes, wriggles, squirms and contorts her body in strange positions until all gas is relieved after every drink.  No amount of prevacid helps.  I will say Dr Brown's bottles have miraculously improved her condition, but since we moved on to a soft spout sippy, she seems to be in even more turmoil.  This morning we tried to feed her milk in 4 different cups to try to alleviate gas...with no luck.  I was practically crying with her this morning and at the same time, calling out to God that we need help!

This afternoon I pulled out the straw cup just one more time to give it a try.  To my disbelief, she actually pulled milk out of the straw, looked up at me and smiled (with all milk falling out of her mouth), but she did it! And she was so proud of herself.  We clapped every time she took a drag and she giggled like she was putting on a show.

Happy girl

(ignore the trucks)

 The second blessing we received was in the form of a box.  A textured carousel busy box to be precise (more info).  At a neurological visit one day, I thumbed through an Enabling Devices magazine and came across this toy and just knew June would LOVE it.  I knew it was too expensive to take a chance on, so I mentioned it to Early Intervention and they agreed to buy it for us!  It came today with June's therapist and she has been overjoyed to say the least.  James was equally thrilled.  Take a peak and ignore the whining:

You can't see it very well, but it is a six sided textured box, and each easy-to-press panel produces a different sound or motion including, music, lights, vibrating, bubble popping and horn blowing (my obvious least favorite). I know you want one now.  Kids and adults of all ages are attracted to it!

Tidal pool

A few nights ago we managed to get it together to get down to the beach-finally.  It's summer time and we live just 30 minutes from the actual oceanfront, yet we truly under-utilize this God-given haven.  So, I packed the many bags, numerous towels, changes of clothes, sunscreens, diapers, cooler full of dinner, water jugs, buckets and shovels, balls and sand toys.  Good thing Rich's mother gave us a handy beach cart.  We would effortlessly glide across the petal soft sand to our resort spot on the shore.... But in all seriousness folks, it felt like we were the Israelites crossing the blazing hot Sinai Desert.  How does anyone do that for 40 years?  I was carrying June and had to stop every ten steps.  And those women probably had at least one child on the back, another tied across her bosom, a water jug on her head, and one of those stick things across her shoulders with two satchels of belongings balancing the whole gizmo.  I'm glad I was born in the last 300 years. 

So the whole way there, I was praying hard.  We've done this before and it has just been difficult with Iva June.  The greatest struggle is her perpetual munching of sand...and I mean, she actually likes the grittiness in her mouth.  It's pick up fistful of sand, put sand in mouth, repeat 80 times at fast-speed.  So I asked God for a miracle.  Maybe a glimpse of hope.  Maybe we won't have to carry her the entire time.  I'm fine with keeping my eyes glued on her, I just don't want to be dealing with the eating of sand issue. I want her to enjoy sand like every other neurotypical two year old...

Well, again God provided a wondrous miracle for us.  Upon arrival, the shore was lined with hundreds of tidal pools before you actually get to the ocean.  It took about 20 minutes for June to get the eating of sand out of her system (literally and figuratively), then she was off to roll, tumble, smile, laugh and wade in the pools of paradise.  It was a definite therapeutic experience and as you can see she was truly delighted!

Apple treat

God has a sense of humor. So, yesterday I sent Rich to the grocery store to pick up "fruits and vegetables" for the week.  That was mistake #1 for me.  He came back with exactly one tomato, a cucumber, string beans, corn, zuchinni, lettuce, and one very large cantaloupe. Instead of thank you, I said, "Where's all the fruit?".  He said that everything was too expensive, that bananas were 70 cents a pound, that the apples must've been from California.  Fine (I thought).  Does he realize how much our son loves apples? How much he'll be begging for them all week. It's one measly apple.  He's not asking for a ride to the moon or a trip to Busch Gardens (although he does ask for that sometimes), he just wants a stinkin' apple. 

Two hours later, after dinner, after the nightly summer walk, after the bath, the pajamas and bedtime stories, James comes creeping downstairs to give me a kiss goodnight (while I'm doing dishes, I didn't want you to think I was relaxing) and also to ask me if he could have an apple before bed.  I sort of giggle and say, "You'll have to ask your dad about that".  He ran back upstairs and I didn't hear any conversation about apples, but I was thinking, "My husband is such a tight wad.  He can't even provide apples for us. He thinks they're a novelty. Untouchable.  A treat."  Little did I know God had bigger plans to show me just how much He cares about me and my family and a little boy's desire for...apples (and a trampoline...but that's another story).

Fast forward to the next morning.  I got up early to meet my friends at the Botanical Gardens for a walk and a frolic in the fountains.  It was so incredibly hot I started melting like an ice cube.  I had perpetual dew all over my upper lip.  I can't believe my friends let me walk around like that. When I checked in the bathroom mirror, I looked like a sweaty old man who had just harvested the fields.

Anyway, my son disappeared up the hill with his friends to check out the "other side". He's an explorer of sorts, and now I'm realizing he will maybe find lost treasure in his lifetime.  And then....here he comes over the hill with treasure.  A grin on his face and an armful of apples is what he carries. They're rolling down the hill after him and he's running to my carriage dumping them in the under basket, squealing with delight over his newly found booty.  As I crept up the hill to discover the apple tree just beyond our view, I took a picture of my son and his friends hoarding and gorging on apples and of course, promptly sent it to my husband.  I sort of just smiled and was gently reminded of God's provision for our family.  He really does care about the smallest of things, doesn't he?

They have worm holes and were deemed possibly uneatable by the staff.  They're wrong. These are the best we've ever tasted.