Tuesday, May 28, 2013

Eight Years

I often tell Walter that I find marriage to be one of the weirdest things I've encountered. I don't know about you, but when you really think about it...choose one person to spend the rest of your life with, the whole thing sounds pretty crazy. I don't consider myself a risk taker, but marriage, that's the risk of a lifetime. I witnessed over twenty weddings last summer, and each one I was thinking, Are you sure about this? Because chances are, things are going to get tough--I mean, really freakin' tough, and I just hope you both make it. I'm super romantic, by the way.

Walter and I celebrated our eighth wedding anniversary last week. We aren't really celebratory people:

"I have a Mother's Day card for you, I just haven't finished writing in it."
"That's okay. I have a Valentine's card for you that I didn't write anything in, and then it was supposed to be your birthday card, but I didn't manage to write in it for that either."

We could probably try a little harder. We used to write long letters to each other--swooning over how amazing one thought the other was. Believe it or not, Walter is quite the poet.

We've been through some of those "really freakin' tough" times--namely, Isaac, the human hurricane who took over our lives three years ago. Do you know the divorce statistic for special needs parents? It's high (75-80%)--considerably higher than the already saddening divorce statistic for a marriage with typically developing children.

My dad is a psychologist, and has witnessed many marriages go down the drain. I don't remember the entirety of the conversation, but he has mentioned couples who basically become roommates. I don't want a roommate. If I'd wanted a roommate, I would have stayed in college and spared myself the emotional ups and downs of love--of connecting myself and committing myself to one person for the rest of my days. When we start passing each other in the hallway without a word, or haven't made eye contact in what feels like days, it's time to reconnect. We've been there and I'm sure you have too, in your own marriage. There have been months when it felt like we had nothing left to give to the other; months when we didn't really care, but we know that marriage is work, and it isn't always fun, and it isn't always full of liking one another, but we get through it, and we've always managed to get back on track.

Insert song: Jason Mraz - I Won't Give Up, because it's true, "we got a lot at stake" and my favorite, "We had to learn how to bend without the world caving in/ I had to learn what I've got, and what I'm not, and who I am"Listen if you want to.

I don't know about you, but I'd like to retain even that small statistic of marriages with children who have special needs, who stay together.

Here's to eight more years (more than that, unless one of us dies before then, which, I'm not really counting on happening) of Walter telling me I "should really clean out my car" (if I wait long enough he does it--I think, at this moment, he's on the brink of doing it for me), of him collecting my coffee cups abandoned in random locations throughout the house, leaving me alone when I want to be left alone, walking alongside me as I embark on various hobbies that seem crazy yet somehow he puts up with them, and putting away the milk for me because I have some sort of aversion to putting the milk back in the fridge.

Before we got married I said:

-There's no way on EARTH I'm doing your laundry...I do his laundry.
-We can eat cereal for dinner...I cook dinner every single night.
-We might have kids...we have two.
-I'll never live in a single-story home...we live in a single story-home, and actually, if we ever move, I'll be happy to live without a second story.
-I'll never be a homemaker (I shudder at the word)...well, let's face it, I've made a home, and Walter says it's peaceful, and that makes me happy, so I'll call myself a peacemaker instead.

This crazy, beautiful life. I wouldn't trade it.

Sunday, May 19, 2013

BRAT (the diet, not the unruly child)

A week ago, perfectly timed with Mother's Day, Isaac started throwing up. We braced ourselves for the stomach bug to take over our lives for the next week or two, as Walter and I assumed we'd all drop like flies--on the bathroom floor. We took our preparation seriously, and thankfully, it wasn't needed since Isaac was the only one who got sick. As a result, my house was really clean. It isn't anymore, since Isaac spent his recovery days screaming, and I spent his recovery days telling him I had to go potty (frequently) so that I could shut the bathroom and pretend I was alone for three minutes. Tuesday night Walter said, "I really can't wait for Isaac to get back to his old self. Well, not really his old self, since I try to forget the past two and a half years, but his new self, as of three months ago." We love both his old and new self, just his new self a tad more.

Isabella actually wanted to get sick, because she knew she would then be allowed to drink Gatorade. I tried to impress upon her that the benefit of drinking Gatorade does not outweigh the amount of time she would spend feeling miserable. In the end, I let her have some Gatorade so she would stop willing the stomach bug to descend upon her.

If you've been reading this blog for any length of time, I'm sure you've come across the fact that Isaac has a feeding tube--a mini button (not a Mic-key, although they are practically the same) g-tube, in case you want specifics. Now, there are some benefits to this: he doesn't complain about what I cook for meals, and I don't have to pin down a screaming child and pry open his mouth for a teaspoon of Tylenol--nope, I just shove it in the tube. Doesn't that sound fabulous?

It does. Aside from the major fact that my three year can't eat with his mouth.

Pretty much everyone who knows anything about or deals with a feeding tube, assumes the adult/child with the feeding tube, is on formula. This is usually an accurate assumption. Before the tube is placed, a plan is set up with the GI doctor about what sort of enteral nutrition that person will receive, and unless there are other medical issues that require more specialized formula, you get Pediasure. Plain and simple, right? The medical supply company delivers your Pediasure to your door, and you are on your way to "complete nutrition"...or something like that.

****Disclaimer: First of all, I'm not a doctor, even though I like to think I'm Isaac's doctor, but I'm not going to pretend to be your child's doctor or assess your needs. Secondly, I have an opinion about nutrition, you may not agree, that's cool. I like to agree to disagree with lots of people, and you may be one of them--we can still be friends. Thirdly, formula is very essential to keeping many adults and children alive, and for that, I fully appreciate the benefits of formula and do not judge its use. We do use formula for Isaac. He is on a fifty-fifty blended diet/formula diet (Organic PediaSmart). 

Anyway, back to the stomach bug and our Walking Puke Bomb, as Walter lovingly nicknamed Isaac. We had some Pedialyte on hand from Isaac's last surgery, so he was strictly on Pedialyte for about twenty-four hours, then he was begging to eat, and I think he was truly hungry, although we really don't know if he actually feels hunger or relief of hunger because he can't tell us. I can literally be holding him and giving him a syringe of yogurt, and he's screaming that he wants to eat--dude, you ARE eating! That's where this whole lack of communication/comprehension/I have a kids with special needs comes in to play, and can become very frustrating.

So, I'd given him a slow feed of formula, and he really did perk up, and started to get some energy back, until later that night when his whole body practically exploded vomit all over my body. It was pretty spectacular, if you can think of volcanic vomit in a spectacular way. I told Sarah it was all my fault that he threw up again, and he shouldn't have had formula...The Blame Game--it's super fun and the mom ALWAYS wins, and I love to win so I'm really good at it!

Since Monday, he's had eight ounces of formula. I haven't been starving him, I'm just severely cutting back on his formula intake, not that that is what gave him the stomach bug in the first place. He just had some sort of virus that was completely unrelated to food or formula. Tuesday, I replaced Pedialyte and formula, with coconut water and rice cooked in chicken stock. Then added applesauce to the rice, and gradually worked up to yogurt in the blend in an attempt to replace the good bacteria in his gut. The BRAT diet for a tubie--it can be done. The last few days his blends have been back to normal. On any given day, his blend may include (not all at once): whole milk, almond milk, coconut milk, chicken stock, whatever we have dinner, carrots, spinach, lettuce, turkey, yogurt, kefir, almond meal, almonds, flax meal, avocado oil, avocado, mango, eggs, celery, rice, oatmeal, our leftovers that we're tired of eating, ground beef, peanut butter, almond butter, honey, etc, etc.

If you want to know more about creating a blended diet for your tubie, there is a blenderized diet facebook page, web-sites where parents share their blends along with calorie counts, and you may want to look into getting the book, Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhaar O'Gorman.

Isaac does not have any food allergies, so I don't have to think twice about what I throw in a blend. Your situation may be different. If you're just starting out, you may need to follow the typical "first foods" as you would with a typical six or nine month old. Once you get the hang of it and have a rough estimate of what food combinations equal the necessary caloric intake for a day, then you are on your way to limiting the amount of formula you need. Because of Isaac's growth issues, he has to receive 1300 calories in 24-hrs. We try to fit all of that in while he is awake because I can't stand over-night feeds--inevitably the medicine port pops open and feeds the bed with stomach contents (fun!), or I just can't sleep because I'm waiting for that lovely beep from the pump.

Some things to keep in mind:

-You need a high powered blender for a blended diet.
-Avocado makes blends annoyingly thick.
-Have a strainer on hand. Some people say they don't have to strain their blends. They must have magical powers or more tolerance for a beeping clogged pump, or they do bolus feeds, which would not require the use of the pump. Isaac is very attached to his pump, and doesn't believe that we are feeding him unless he is hooked up to the pump.
-I should say, consult with your doctor before doing this. Nutritionists tend to live in the dark ages, so don't be surprised if they are against a blended diet. They like numbers, so give them numbers. Write down everything you have tried, or considered putting a blend, and they can whip out their little calculator and go to town, and then they'll look up from their numbers, and say, "Just make sure you give him enough water." Done.
-I should also say, I did not consult with anyone before doing this. When I did finally tell his GI doctor, she said, "anything that makes him look this good, I'm happy with". I love her, did you know that? I knew from the start, I didn't want my child stuck on formula, and I certainly didn't want a nutritionist to tell me that, "formula ensures that Isaac is getting a complete nutrition and is meeting all of calorie, fat, and protein needs." When I have heard that (because as you can tell nutritionists and I don't get along), my response was: "So you're telling me, every two or three year old, or eight year old should be on formula all day long, every day? Do you have a child? Would you be satisfied opening a can of Pediasure and feeding that to them after you get home today--and then before bed, and then for breakfast tomorrow morning." Hmmmm...that's what I thought.
-Yes, it does take more work, and it's okay to grab your can of PediaSmart, or Pediasure, or whatever you have on hand, because some days are just too darn complicated.
-During warmer weather, you will need to keep an ice pack in your tubie's feeding bag.

Unfortunately, the whole blended diet vs. formula debate for enteral nutrition becomes this heated thing that is very similar to breastfeeding vs. formula for an infant. Though I firmly believe that breast milk is best for babies, I gained an understanding through Isaac, that there is a time and a place for formula. I didn't have that appreciation a few years ago, and I do believe I am better person for being able to accept the use of formula. Your child's medical needs may be so involved that you cannot possibly think of adding one more thing to your daily routine. I get that, and that is okay, because formula is made for those situations. You have to do what you believe is right for your family and your situation. I choose to give Isaac sixteen ounces of formula a day, and sixteen ounces of blended food--that's what I've found is doable for me, though this week I have almost completely eliminated formula from his diet, and will try to maintain that.  

We did find that once Isaac began receiving whole food through the tube, there was a marked improvement in his energy, development, skin tone, and overall appearance, and for that reason, I cannot ignore the benefit of him receiving a blended diet. Also, because I work to provide healthy foods and meals for my family, I get personal fulfillment knowing that I am feeding Isaac those prepared meals as well. Learning that he was going to have a feeding tube was extremely disheartening for me, and I compensate for that in providing him with beef stew if we have beef stew, or whatever meal that I've worked to prepare for the rest of us.

I'm still learning--if you have a child on a blended diet, what works for you?

Tuesday, May 14, 2013

Plant a seed, watch it grow

As it turns out, I thoroughly enjoy this business of seed-starting. The entire process of placing a seed in soil, watering, lighting, waiting, and then, on that day the little seedling breaks forth, makes the whole event quite miraculous. Walter calls them my "babies", and I'm fairly certain I've examine them and stared at them, more than I have my own children over the past four weeks. 

Emerging, head bent

Hands, clasped in prayer

I have twenty-nine sunflower seedlings that have been re-potted (about twenty more still under lights inside), and now require being taken out of the shed in the morning, and back in at night. Isabella is a wonderful little helper, and I love how much she is learning about the growing process. It has been so much fun looking at and commenting on an individual seed's appearance (a Marigold seed, for example, is the most interesting of all the seeds we've planted) before it is placed carefully in soil, reading the length of germination, and what certain plants prefer in order to begin the process of germination--science class, at its best. The only seed we've failed thus far, is Verbena.   

When spring finally shows up, it doesn't disappoint. Our winters here are long and dreary, but it's worth the wait. Though I'm sure some would disagree.

Walter decided to put a fence around the garden. The bunnies watched (I'm not kidding). I assume they are training for Bunny Olympics, and the high jump will be their number one focus.

I finished digging over the garden, and have planted peas, green beans, edamame, and carrots. The tomatoes and peppers are being lovingly cared for inside, along with kale (which will go out soon), onions and a whole host of herbs and flowers.

Last night, Walter began putting shingles on the roof of the tree house  Isabella is so excited that her roof now looks like "a real roof--like, a roof that is on a house!" Isabella does some flips you wouldn't believe on that swing set. I asked if she was going to join the circus since there is no stopping her bravery.

Isaac really wanted to ride his friend's bike, and also felt it was necessary to carry a shot the entire time we were at playgroup.

This little man, has been walking around barefoot outside. He never ceases to surprise us.

Tuesday, May 7, 2013

The Red Fox by Isabella

I had an epiphany this morning--Use my sister to my advantage. In a nice way, of course. Sometimes it can be very hard to motivate Isabella to do her school work. We are currently bribing her with ice-cream (if she gets five stickers in a row for cooperative behavior, she gets ice-cream)--it works, don't judge, or you'll find yourself doing the same thing one day.

Before my sister moved to Texas, she told Isabella to call her and read her a story. Isabella was excited about this idea, which was great because she never wants to read aloud, and let's just admit, practice makes perfect. This business of Isabella being excited to read aloud over the phone, is perfect. What is even more perfect, is the fact that this morning she told me she wanted to write a story to send in the mail to Jesse. Yes, the wheels are turning...addition facts over the phone; telling time; reading; vocabulary words...the list goes on and on.

As written by Isabella (she did ask how to spell 'illustrated', so I gave her that one):

The red fox
Illustrated by Isabella
mad by Isabella

wus upon utim
Threr was a red
fox The red fox
wunid too play but
Threr wus no buty
Too play with so
The red fox wet
on a woc Then
The red fox wet
Too tak a nap
Then hee woc
up eThen The
red fox fowd
his famully
The Eed

Saturday, May 4, 2013

Scratch my eyeballs out

When I was younger (because I'm so old now), my mom used to say, don't rub your eyes, if you do have to rub your eyes, do so gently, wear sunglasses when outside, and don't wear make-up to bed. I almost always abide by those rules, which are set in place for eye protection and avoidance of wrinkles. To this day, I feel guilty if I don't wash my face before going to bed, and Walter often makes fun of me for wearing sunglasses when the sun is barely showing, and you'd better believe I don't rub my eyes...until this week. I've never been one to experience this allergy business that people complain of...until this week. I've checked many times to see if fleas are living in my eyeballs, because I'm fairly certain they are the only thing on earth that could cause my eyes to itch this badly. Most of this week my thought process has led me to consider scratching my eyeballs out, which then leads to a personal pity party, drugs (the legal kind, supposedly aimed at treating this allergy business), and then make-up application so that I don't look like I'm doing the illegal kind of drugs (or just spending a lot time crying, which is what my mother-in-law thought when she saw me this morning), and also so that I stop rubbing my eyes. It's been fabulous. And basically, I'm using my blog as a platform on which to complain, since I'm pretty sure Sarah is tired of hearing me complain to her. Just when I thought I'd experienced the worst of it, I woke up with hives on my face yesterday. 

Moving on. 

Two years ago, Walter and I decided we wanted to grow a garden. I began my research, and that is how I stumbled upon Chiot's Run, written by Susy, who is a really amazing and inspirational gardener. Coincidentally, Susy and her husband, are videographers, and I had the chance to meet her at a wedding and I've enjoyed following her blog for the past two years. Our garden did well that first year, mainly due to the attention from my mother-in-law since that was the spring and summer that everything regarding Isaac's health and delays came to light. We had other things on our mind, and the last thing I could focus on was whether or not a tomato was ready for picking. I was focused on whether or not Isaac would actually consume eight ounces of liquid throughout an entire day. Bad times, my friends. 

Last year we didn't do much of anything in the garden. But this year, we're going full speed ahead, and so far so good.  

I love the moment a little seedling makes its first appearance above soil.

Isabella is actually very helpful in the garden. She enjoys digging up weeds, and raking over the soil once I turn it. I am the tiller of the earth.

A list of what we're growing:

Seeds from Botanical Interests:

Linaria - Fairy Bouquet
Marigold - Lemon Drop
Marigold - African Crackerjack
Rudbeckia - Black Eyed Susan
Onion - Ringmaster
Kale - Nero Toscana
Sage - Broadleaf
Basil - Greek Yevani
Basil - Italian Genovese
Thyme - English
Grass - Little Bluestem
Lavender - English Tall
Lavender - Hyssop
Echinacea - PowWow Wild Berry
Echinacea - Purple Coneflower
Zinnia - Cut and Come Again
Pepper - Sweet Cherry Blend
Tomato - Italian Roma
Tomato - Cherry, Sun Gold
Tomato - Better Bush
Jupiter's Beard - Centurion Shield

Sunflower - Teddy Bear
Sunflower - Flash Blend

Sunflower - Lemon Queen
Verbena - Brazilian Vervain
To direct sow:
Carrot - Danvers 126
Spinach - Lavewa
Edamame - Butterbean
Spinach - Monstrueux de Viroflay
Broccoli - Di Cicco
Lettuce - Buttercrunch
Lettuce - Little Gem, Romaine

Pea - Shelling, Progress #9
Pea - Shelling, Green Arrow (I thought it would be really fun to shell peas with the kids)

Seeds from Renee's Garden:

French Rosemary
Lavender - Spanish
Peppers - Jewel-Tones Bell Peppers
Sunflower - Music Box
Sunflower - Heirloom Titan
Sunflower - Snack Seed
To direct sow:
Zucchini - Dark Green Raven
Crookneck Squash - Sunny Supersett
Bush Beans - Classic Slenderette
Poppy Iceland...Just because they're pretty

Oddly enough, I'm not a big vegetable eater, but I'm trying really hard to diversify my eating habits (I'm a carnivore through and through), and this summer I plan to experiment with salads and salad dressings. Walter will eat anything,  but it will also be very nice to have food on hand for Isaac's blenderized meals. I love using herbs, and all of the flowers are meant to limit how much we have to spend on filling in our front of the house garden space.

Starting seeds definitely takes time and they require a fair amount of attention. In the above picture, they were all receiving some exercise time with a fan blowing on them. Our office has been a virtual greenhouse for a few weeks now, and I'll be happy once I can move everything outside, but it is very exciting to watch everything grow, and each morning I wake up looking forward to checking on the little seedlings. Walter asked if I've had an audience of bunnies watching me prepare the garden. I'm sure they will be lining up at the edge of the woods ready to devour anything and everything. We're still deciding on whether or not to put a fence around the garden, or just plant enough for all of us to share--assuming we have bunnies who have graduated from the toddler stage, and don't mind sharing a head of lettuce, or two.

For now, we just have to protect ourselves from the pirates.

 Our woods are alive...

I thought about editing out the snot, drool, and dirt from his face, but that just wouldn't be an accurate portrayal of life, now would it?