Author: geekino

When you have a child who just wants to bounce and crash, what do you do to celebrate his birthday? You rent a bounce house!

Actually, I really tried to talk myself into a smaller celebration this year but with Patrick’s future as unpredictable as it is, I wasn’t sure we’d find another chance. So, when I found a couple renting the awesome, super big bounce house with slide, we just decided to go for it.

Patrick eventually warmed up to it and loved the bounce house, but at first the blowers were just TOO loud.

Everyone had fun playing in the bounce house. Even the grown-ups. Though I tried to go down the slide headfirst and nearly gave myself a concussion.

Again, we did a hatbox cake. I took Patrick to the craft store and he picked out some Cars die cuts to decorate the cake with. We filled it with party favors.

We served glazed doughnuts instead of cake. The bakery even make Patrick a couple allergy-safe unglazed ones. But alas, his belly felt sick that day and so he didn’t eat.

We kept the party small as far as guests go, but Patrick did have a favorite friend there. There is a little boy who goes to school with Patrick who has a very severe degenerative brain disease. He doesn’t have much control of his body and doesn’t walk, talk, or play like other kids his age can. And yet, he has totally won Patrick’s heart. When I asked Patrick’s teacher which classmates should be invited to the party, this boy was an easy answer. Patrick thinks he is the best friend a boy could have. Funny how these special little children steal our hearts. We were thrilled that he and his mom and sister could join us.

Patrick had fun opening presents and his guests enjoyed their “bounce” themed gift bags as well.

Simple and a little too extravagant all at once. And a wonderful way to celebrate a miraculous little 4 year old.

I hate catchup posts. I hate that I’ve let this blog fall behind. And yet, I am woefully behind and have some big things coming up I want to write about as they happen.. So, get ready for the week of catchup posts. Today’s topic? Halloween and birthday.

Somehow in our morning talks about upcoming events, Patrick figured out that his birthday and Halloween were the same thing. And so, for at least a month, whenever you asked him what he was going to be for Halloween, he answered 4.

So, after some consideration, we finally figured out how to make that costume happen and had a friend who is a much better seamstress than me make him a “Super 4” costume.

One of the great things about it was that it was comfortable enough for him to willingly wear all day. He had school that morning and I wanted him to be in a costume he’d be happy to keep on.. And, other than the cape that bothered his neck, he willingly wore it all day long.

I found some bendy, stretchy tubes at Toys R Us that Patrick’s therapist had been nuts over and so I got several and sent those with Patrick to school. The teachers were nuts over them, too. As were the kids. I guess they’re a favorite therapy toy there, too and the kids were thrilled to each have their own.

We got him up early for presents so he could be on time for school. This year, we got him some big noisy lights-and-sound trucks. Patrick’s big time into fire trucks and police cars. And then, because Daddy has been taking ice skating lessons and Patrick had taken an interest, Patrick got a pair of toddler roller skates. You know, the kind that you can lock the wheels on. He wore them around the house for most of a week and after the first couple of days, even learned not to fall down wearing them.

(As we’ve had a rather icy winter, it’s been neat to see him consciously transfer this skill. I just remind him to walk like he’s on skates, and all of a sudden, my clumsy, impulsive boy slows down and stops slipping and sliding.)

Rather than spending a lot of time trick or treating for candy that Patrick can’t eat and could potentially have a life-threatening allergic reaction to.. we decided to let Patrick help hand out treats this year.

Instead of candy, I got a bunch of toy airplane kits for about the same price. Patrick handed out a few, then went with daddy for a walk to visit some neighbors, trick or treat a bit, and show off his costume. Then he came home, we ran out of treats, and tucked him into bed.

I am astounded at how far Patrick has come in these 4 years. He was so tiny and fragile when we met him. We wondered often if he’d hold onto life for very long. But Patrick isn’t just hanging onto life.. He is living and celebrating it each day. We have been blessed by quiet normalcy in this past year. And we have watched Patrick grow into an amazing, rough-and-tumble, thrill-seeking, heart-winning little boy. Instead of being tiny and light, he’s solid as can be and a force that can’t be stopped.

I’ve been seeing ads for weeks about a petting zoo open for the month of October at a shopping district called Gardiner Village. I finally decided that if we didn’t get to it soon, the chance would pass.

Tuesday were $2 days. So I texted Brian’s sister to see if she and Patrick’s cousin would like to join us.

With a bag of feed, the animals were more than happy to see us. This goat was especially hungry today. Another, smaller goat, preferred the idea of munching on Patrick’s TPN tubes and I had to keep a close eye out.

The alpaca was a favorite of Patrick’s. When he first climbed on, she got excited and ran away. So the keeper had her sit down, Patrick climbed on and hugged and hugged her.

That was such a success that I decided we had to splurge the extra $2 for a pony ride. (Especially since the ponies weren’t tied to a wheel, but went for walks through the village instead.)

Patrick’s pony was named Silver. Hi ho silver, away!

For Patrick, though, the best part of the day was holding a rabbit. This little sweetheart of a bunny was SO tame! Patrick fell in love immediately and squeezed her so tight I had to keep reminding him to loosen his grip. He asked me if he could keep her. He asked if he could take her home. Too bad Brian is allergic.. and I can barely keep houseplant alive while caring for Patrick, let alone one more pet.

But Max isn’t soft and cuddly and he certainly doesn’t let Patrick hold and cuddle him.

So, all afternoon and evening, Patrick talked about “hold rab-rab”. He even prayed about it.

Patrick’s cousin was nervous about touching the animals. Thankfully, though, there was a whole “village” to explore.

They loved finding and “counting” the pumpkins.

Patrick found the witches fascinating. His cousin wasn’t 100% certain they weren’t real.

But they both had a pretty fun morning. It was a great kickoff to our Halloween/Birthday celebrations.

Today was our Primary Program at church. If you’re not familiar with the Mormon Church, Primary is the children’s Sunday School program. And once every year in Sacrament Meeting, our main worship service, instead of sermons, the Primary children and their teachers give a program that teaches what they have been learning that year in Primary. It’s made up of lots of songs and cute little parts spoken by children in turn.

Patrick had a part. “When I pray, I feel better. Heavenly Father loves me.”

Ok, the part was longer at first, but too long for him to say. So we broke it down into a shorter message that he could pronounce or sign without much help. We’ve been practicing it for a month.

9 words doesn’t seem like much. But for Patrick, saying those 9 words in public was an enormous undertaking!

First, Sacrament Meeting is just hard for Patrick. The lights. The people. The expectation to be quiet and still. It’s a lot for a little boy with sensory processing issues to handle. And to participate in the program, Patrick had to sit away from mom and dad. On the stand where he could see everything.

Then there was the microphone. Most kids by the time they’ve been in Primary a year, have stood up at the microphone in the Primary room a few times to say a prayer, read a scripture, or give a talk. But Patrick, because he doesn’t talk much, has not. He was both thrilled and intimidated when they stood him up at the little microphone in the Primary room to practice. He just wanted to play with this new toy. We practiced a lot with the microphone. He really liked the way it made his voice reverberate and I was pretty sure he planned to shout in loud, long echos, the words of his part.

And then, as if nerves weren’t enough for any child, there’s his apraxia. Remember that apraxia is a result of his brain injury. It means that his brain has a hard time telling his mouth how to make sounds. He understands just fine. But getting words out is a very difficult task.

Because he understands, Patrick is aware of how awkward his language is. And, although he’s not normally a shy boy, when asked to speak he gets quite nervous.

We went to a practice yesterday morning. I stayed for support, but hid out of sight. And because Patrick was among Primary friends where he was safe, he played and jumped and shouted words he knew from the songs. And, with some coaxing, did a remarkable job saying his part when his turn came.

So program day came. Patrick sat with mommy and grandma until after the sacrament was over. (Teaching a teacher how much bread to let Patrick have to make sure that he doesn’t gag and throw up didn’t seem like a risk worth taking this year.)

Then, I took him to his seat on the stand. He played at first, but kept calling for my attention. Then he was done and wanted to come back to sit with us. When we didn’t let him, he cried. Loudly. Daddy went and sat with him and comforted him and stayed on the stand for the rest of the meeting.

When Patrick’s turn to speak came, I wasn’t really sure what would happen. But, he bravely walked with his teacher up to the podium and tried to kick it while he talked. It took a few nudges to get him to speak. And then, in a tiny little voice, so shy you’d hardly recognize him, Patrick repeated. “Wen I pay, i peel bebber.” Then, when it was time to sign “Heavenly”. (He can’t say it, but the sign for Heaven is very cute and he loves doing it).. he couldn’t because the leader helping next to the microphone was holding his hands. (so he couldn’t grab the mic.) I think that was a bit of his undoing and that sign never came. But he mumbled “Fadder wuv me”, I think. And then went back to his seat.

That’s it. 9 words. But spoken before a very big congregation. A glorious acheivement.

And a bigger miracle than most people there may have realized.

Fall is my favorite season. I love the cool of the air. I love getting my sweaters back out. I love the way the mountains turn all patchworky as the leaves change color.

I love that it’s my birthday and Patrick’s birthday and the time of year I got engaged in and the season we bought our first house in and the anniversary of our becoming a family.

But there is one thing I hate about fall. I hate the end of the harvest. I hate when the cold air turns my tomato plants all wilty and I have to pull them up and throw them away. All those beautiful green tomatoes. All that potential. Right in the garbage can because it’s past their season.

Today was that day. This is what’s left of my garden.

This year I grew my most successful vegetable garden ever. I haven’t had to purchase a tomato or pepper since early July. I ate buttered squash for lunch every day for months. I grew and learned to cook with fresh rosemary.

I loved working my garden this spring. It was the first time since Patrick came into our family that I’d been able to do so. And Brian and I loved spring and the joy of reclaiming our yard and turning it into a little paradise.

It seemed I learned so many lessons as I worked in the garden each day. I saw the importance of persistance as I pulled tiny weeds before they got too big.  And daily repentance as I saw flowers flourish each time I’d clip out dead old growth. I saw Patrick flourish, too.

He figured out that if he took his backpack with him, he could go further. And so, we threw it in a little wagon and he explored the yard and the street. He helped me plant seeds in the garden and especially loved helping to pull weeds.

In spring, it seemed like we had everything in control and all the world ahead of us.

Then summer was long and hot and hard.

And as fall came, things cooled off. We started to get some parts of our lives back in order. We’ve been working on fall cleaning.. getting our house in order. We’ve been working on getting Patrick settled back in school and planning to draft a new IEP for him. (Due next week.)

And the time came to call it the end of the season for my garden.

After learning so many wonderful lessons in planting, I couldn’t help looking for other life lessons in clearing of the garden. I mean, it just seems to dismal to rip out and throw away the plants you’ve tended all year.

But, if that work weren’t done, there would be no room for future growth. In fact, the soil is made best when some of the things we’d consider garbage (compost for example) are put to better use.

And this is perhaps the lesson I needed most today.

It’s been a hard week. A week and a half ago, I put Patrick down to bed.. Only to have him wake an hour later vomiting. Vomiting is not uncommon with Short Gut, but this time was awful. Dark green and strange smelling.. and he seemed so sick. And for the next several hours, I’d comfort him and put him back to sleep… only to have him wake up vomiting again.

Finally, I cuddled him up in the rocking recliner in his room so he wouldn’t be laying flat.. I put his belly to downdrain and I held him all night. He’d wake at least once an hour feeling sick again, but we made it through the night.

I kept him home from school the next day and called his doctor, who ordered some labwork to make sure Patrick was ok. We spent the day comforting him (he gradually seemed to feel better) and cleaning the house, washing laundry, and otherwise getting things in order in case things got worse.

Friday morning, he still wasn’t quite himself, but I’d decided it was just a stomach bug. Sadly, the labs didn’t agree. One of the blood cultures was positive, and so they called us into the hospital to start treatment.

He had an amazingly good night in the hospital and by morning, we’d all decided the positive culture was a false alarm. We made plans to go home.

Only Brian’s car was in the shop (his new engine has failed) and so I had to wait for him to get off work to take us home. And right before time to leave, I got a call saying that Patrick’s second set of cultures was positive and that Patrick did, indeed, have a line infection.

But, as Patrick’s GI was the attending, they decided to still let us go home and treat the infection from home.

The rest of that weekend was busy with antibiotics and labwork and trying to keep a sick boy feeling better. By Monday, things were finally seeming stable. Patrick even went to school. (His teacher was so pleased that he was allowed to come even with an infection.. Strange.)

We have about a week left of treatment and things are getting better. We still have middle of the night antibiotics and benadryl pretreatment making Patrick feel tired and crazy. Patrick’s belly is still very sick, dumping a liter and a half a day again and making me worry about new dilation and bacterial overgrowth. His button is tender for some reason, too. Two nights ago he could barely sleep because without it on, he’d throw up and with it on, he was in pain. (Finally figured out to how secure it to pull less and, with some pain meds, he could sleep.) But on top of all of that, there’s a weak spot in his line and soon it will HAVE to be repaired. Brian’s car will be gone at least one week more and so we’re juggling getting him to and from work. And I feel like I’m swimming upstream when it comes to getting anything done around the house.

I can feel the weight of all the things I wish we’d done this year, but didn’t do because health or work or something kept us away. And the weight of all the things I still should do, but just can’t get to.

And I’m beginning to feel like the fall chill is turning my leaves wilty, too.

Sometimes this all seems like more than I can do.  And yet, every morning, we get up and we keep going.

And so, if I choose to take one lesson from clearing my garden today, it’s this. Things can’t stay beautiful forever. We do not live in a Garden of Eden continually producing beautiful fruit and flowers. We live in a real world with weeds and frost and compost.

And sometimes the very best way to bring a good harvest is to just take out what is spent, what is dead, what is gone. To just do the ugly work and wait for a warmer season when you can start over again.

If we always held on to last season’s plants, hoping for potential and those last green tomatoes, the ground would never be able to be prepared for a new season.

I’ve saved all I can. My gardening gloves have holes worn in the fingertips as evidence of the work I’ve done. Perhaps a symbol, too, that I have given my all to this special needs parenting thing.

So bring on the canned pumpkin pie and the frozen turkeys. I’ll bask in the harvest of Patrick’s astounding new language skills. And look forward to birthdays and holidays and leafpiles. And maybe plant a few bulbs so they can tell me when spring is here again.

Church is hard. It’s long and boring and you have to stay on a pew with your family and try to be quiet. Patrick likes to stand on the bench and play with all the people who sit behind us.

The first week of July, he lost his balance doing this. Came down on the corner of the bench in front.

He landed and held his breath and I knew a scream was coming, so I grabbed him quick and hurried out of the meeting as quickly as I could. A woman visiting our meeting stood and tried to follow me with this horrified look on her face.

I didn’t understand why until I got to the foyer.

Thank goodness other friends followed and went back to get Brian, who had no idea what had happened.

We applied pressure and bleeding stopped, but it was pretty clear he’d need stitches.

We debated where to go, but decided that if he had a concussion and needed to be admitted, he’d be most comfortable at the children’s hospital.

He was very happy that they used pink coflex to hold a gauze of lidocaine on the wound.

When his head was good and numb, a very green seeming resident, with supervision from a familiar ER doctor, irrigated the wound. Then they put in five staples. They just stapled hair right in.

Staples are preferred over stitches for children’s head wounds because they are easier to put in and take out. (Stitches would require sedation.) He has a cool scar that will show up if he ever shaves his head.

Patrick didn’t like the staples. He called them “pretties,” confusing them with the bobby pins his aunt sometimes puts in his hair. They were uncomfortable to lay on so we had to change all his diapers standing up for a week. He couldn’t immerse his head in water, but was supposed to wash it often. Every day I cleaned it with peroxide and put an antibiotic on it. He didn’t like that. They made it hard to sleep, too. He asked me several times a day to take the “pretties off.”

But they only had to stay in for 6 days. We took him back to the hospital and it took about 2 minutes for a nurse to remove them with a one-pronged staple remover.

I’m amazed this is the first ER visit he’s ever had for an injury. I have a feeling that, for this active boy, it will not be his last.

Hopefully, it’s the last injury in sacrament meeting, though.

There is nothing like the guilt of eating a molten chocolate lava cake in front of a kid who is allergic to the dairy in the ice cream, the eggs in the cake, and forbidden sugar.

A while ago, we started cheating. We started letting him taste the chocolate syrup on the plate.

When summer started to include ice cream parties, we expanded the spoiling. First, it was a drop of chocolate syrup on a spoon. Then a line. Then a bowl drizzled with it. This is his preferred dessert.

In a 19 food allergy panel, the only food Patrick tested completely negative for was chocolate.

We’ve all gotta splurge sometimes, right?

(In Patrick speak, “chocolate” is pronounced “daw-daw”)

Patrick went back to school this week! We’re both excited, but especially him. He has been all smiles since he understood what was coming.

Of course, there are a lot of logistics involved. Doctor’s orders. Emergency plans. Medical supply kits. New care notebooks. All to give us some added piece of mind.

All in all, it was a good back to school experience. The only kink in plans was when the teacher called me a week before the first day of school to say that, instead of coming Tuesday Thursday, they wanted him there Monday Wednesday. This would give him the opportunity for more one on one time with the physical and occupational therapists and a chance to play in the “motor room” which apparently has a padded floor and things to climb all over the walls. I set up our appointments around the other schedule, so we had some stressed afternoons getting to appointments on time.. But it worked out, I think.

Last week I went to the parent orientation meeting. I walked in and Patrick’s teacher, who just noticed I mentioned speaking spanish last year, asked me to translate the meeting. So, we met the classroom staff, talked about rules, and I mumbled a translation the entire time to another parent there. She asked me if I’d like to be her translator this year. I’d love the excuse to help out at the school, but I’ll admit, the idea of translating another kid’s IEP meeting is a tad bit intimidating.

The next Monday was Labor Day, so no school. And then Tuesday, they had a classroom open house. Patrick was SO excited! I let him pick out his clothes. (He chose a hockey jersey, just to make Daddy proud). And then we headed out to the school. He was so excited walking through his school halls, I thought he’d burst!

I was incredibly proud that he walked in and immediately picked his name from the board to check in. Then he got to show me around the class. While we toured, I got a chance to talk to the new speech therapist. I’m excited because she is coming from the school for the deaf and blind and is, therefore, fluent in sign. In other words, she’s seen kids learn to sign and therefore knows what immature signs like Patrick’s look like. She might understand him!

He showed off for her, signing and saying his ABC’s up to F. (This is a new trick he’s very proud of… he then jumps to O, and finished the alphabet with a few omitted letters.) She was quite impressed.

I told her he has apraxia and, like the last school therapist, she was doubtful. But instead of brushing me off, she asked where I’d gotten the diagnosis. When I told her I’d had it confirmed by 2 private therapists and his neurologist, she said “Oh! Well, then how can we help him?” I explained what has and has not worked and how much we’d like to see him continue to use signs and pictures in addition to words and she was completely on board. Patrick’s teacher made a good effort to sign in circle time for him, too, which impressed me.

I’ve been really worried about Patrick’s signs not being understood in class and very worried about speech therapy at school undoing the progress we’ve made in private therapy over the summer by not addressing apraxia, so this was a huge relief for me.

Last in the open house was a circle time. The kids gather in chairs to sign songs, do activities, and learn. Patrick was SO good! He didn’t bother the other kids. He was completely interested in the teacher and only got up because he wanted another turn. (At least a dozen times in 5 minutes.) He correctly identified all the colors and matched pictures.

One classroom aide leaned over and commented to me that his understanding and participation had grown by leaps and bounds over the summer.

And then, we went home. Snuck in a nap. Went to occupational therapy. And terrorized the house till daddy came home.

His first day of class was the next day. You’ve never seen a kid so excited! Again he picked his clothes. Got his meds. And then was ready too early and stir crazy till I said we could go.

They changed the drop off for school. Instead of meeting with the other preschoolers which was a lot of walking, we meet where the busses drop off the other kids headed to the medical wing. It’s nice to not walk so far, but was very, very busy.

Patrick couldn’t take his eyes off the busses. (Therefore, I don’t have a single picture of him looking at the camera when I dropped him off.)

But he was happy and at ease as soon as we met the same classroom aide at the door. I left him with her and he happily went off to class.

I came home and attempted what I hope will become a new tradition. I went for a jog.. well, ok, a walk with a few minutes of running mixed in. But it hurt like a jog.

3 hours went fast this time. Perhaps cuz I worse myself out. Or because there is so much I wanted to get done.

I was thrilled to find one of my favorite moms from last year picking up her son from kindergarten at the same door. Patrick was less impressed by that, though. They told me he’d had a great day, completely at ease and happy to be there.

He napped more easily than he has for months.

Yup, we’re happy Patrick’s back in school and can’t wait to see what he learns. I’m also so happy for him to be back with friends.

 

Patrick can reach the fridge and get water all by himself.  He finds and fills glasses several times a day… except when he misses and leaves a puddle on the floor.

When he is successful, he drinks the water… except when he pours it on the floor… or on himself…or on me.

So if the floor is wet or my socks are wet or his clothes are wet, nothing is broken or leaking.  He just got a drink. He was “tee-tee” (thirsty).

Patrick has informed me that he can do this because he is smart.

I’ve been receiving e-mails and comments from those of you who live far away wondering if we are ok and why my blog has been silent these past few months. I appreciate your caring and concern and want you to know that it isn’t because I’ve forgotten that there are so many of you out there who love and care for us and Patrick. It’s just that, well, when times are turbulent, I’ve learned it is best to reduce speed and limit distractions. In this case, I decided (unintentionally) that the only way I could make it through this summer was to do a little less. And, in this case, it meant going radio silent.

Last you heard from us, we were coming home from Disneyland. (I still owe a post about our last day.) Well.. we came home just on time for the 4th of July, complete with fireworks and ice cream hosted at our house. And then, just as I finished unpacking and getting settled at home from our trip, Brian flew to Iowa for a business trip.

When he got home, he informed me that while he’d been out of town, his team had decided that in order to meet a deadline, they’d need to work some extra hours. That week, he had a few late nights, but we seemed to make it through ok.. tired, but ok.

But the next week, he had a conference in Portland. This time for a week. And, when he got home, his team had upped their game on the late hours.

His first day back to work, Brian didn’t come home until after 10 P.M. He worked no less than 16 hours a day for the next month.

Meanwhile, Patrick and I were making the best of things at home. By July, it was sinking in to Patrick that he really wasn’t going to be going back to school for a while. Summers are hard for a lot of moms, I know, and I feel a bit cliche saying that having my son home from school made for a tired mommy.

For us, it was a bit more than that, though. First of all, since Patrick was 9 months old, he has had either a therapist (or 2 or 3) coming into our home to help him or has gone to school where he was surrounded by therapists. In other words, Patrick has never, in his memory, had to rely on mommy alone to meet his needs.

And, because of a life full of hospital stays and high level medical care, as well as the effects of his brain injury, Patrick’s needs are greater than most kids.

Have I explained the term Sensory Processing Disorder before? Patrick is a sensory seeker. That means that when he is tired, when he is stressed, when he is overwhelmed, or when he is just plain bored… he needs movement. A LOT of movement. If this sounds foreign, think for a minute. When you’re sitting in a long lecture, what do you do? Do you chew on a pencil? Do you rock back in your chair? Do your twirl your hair? When you’re stressed do you go for a run? Clean the house? Grab a crunchy snack? Drum your fingers or tap your toes? Those are all examples of ways that you use your sensory system to calm or to focus yourself.

For Patrick, however, calming comes in the form of jumping on the bed, running down the street, pushing or pulling a heavy load, or shaking the furniture so hard I think it will break.

And, because he is young and his sensory needs are so great, he isn’t really good at calming himself. If I don’t help him, he just gets more and more worked up until he is hitting, screaming, yelling, throwing… all in an attempt to get my attention and get my help to calm himself down.

And so, here we were… No occupational therapist (the experts who specialize in helping kids cope with sensory processing) at all… no school… no play groups… just him and mommy and a world who doesn’t understand why he can’t hold still. And no daddy at night to help break things up.

And, on top of that, very fragile tubes connected to his heart that were at risk each and every time he felt out of control.

I quickly learned that the only way we’d make it through our day was if I set aside times two or three times a day to go to the playground or to play in the pool or to walk around the neighborhood.

Inbetween those times, I was trying to keep my house together. (A toddler at home can make a big mess. A toddler who is a sensory seeker can destroy a house in under an hour.) I was trying to keep up with family and church commitments. I was trying to meet all of his medical needs. (Remember that he still takes at least half a dozen medications morning and night, requires special diapering several times a day, needs replacement fluids run, needs TPN prepared. Once a week I have to order, meet a shipment of, sort and put away 2 coolers of IV bags and a case of medical supplies. And on, and on.) He developed a deficiency of a nutrient that is on backorder in IV form and the oral form made him so sick he’d vomit every day. The pharmacy changed brands of another of his medications and that tasted so bad he’d often throw it up. And so laundry went up and the floor needed mopped at least once a week. And have I mentioned how much this little boy resents the time mommy needs to cook and eat food that he doesn’t care about? Especially when we’re the only ones home at mealtime. Or how much he hates when your attention is on a computer screen instead of him and how good he is getting at typing or stealing the mouse or resting his chin in the pressure point on your arms o you can’t move your fingers without pain and HAVE to stop and do what he’s asking for?

My days start as soon as the sun rises, somewhere between 6 & 7:30 a.m. and end somewhere around 11 p.m. when the last of his IV fluids are finally hung. Thankfully, he most often sleeps through the night because if he wakes, thanks to his sensory needs, it takes hours to fall asleep again.

There were so many days I’d just sit down during nap time exhausted, look around my perpetually messy house and just wish I could do something to make it better.. But then decide I’d better sleep, or I’d never have the energy to keep up with Patrick when he woke.

And so many days I just wanted to scream to the people who, well-meaningly, would expect me to keep up with the same things I’d always been able to do before. I wished I dared say that if their dishes were done or their laundry was folded or their beds were made or their bathrooms were clean or their weeds were pulled…if they’d read a book, been to the gym, written a letter… or even if they’d done something so simple as showering two days in a row.. that they were probably doing better than me.

But this life is hard to wrap your mind around unless you’re living in it. I’m not unhappy. (Though my anxiety does rear it’s head from time to time.) I’m just doing the best I can. I love my son and enjoy our time together. But there are just a lot of things I can’t keep up with if I’m keeping up with him.

The times I’ve vented to friends about how overwhelmed I am, the reply is often “well, that’s life with a toddler.” And inside I sigh, because I know that it’s a little more than that. But I also know someday I’ll miss these days, too.

Brian’s bosses finally figured out that 16 hour days weren’t good for employee morale or families, either and he’s gone back to a normal work schedule. Patrick started school and I’ve been granted a beautiful 6 hours a week to work and exercise and think and clean without wondering if Patrick is safe or into something… or, worst of all, really standing just behind me stuffing things into my pockets so when I turn to walk, I’ll step right on him and he’ll fall down and cry.

Wednesday was Patrick’s first day of school. He was so tired when he got home, that he fell asleep for his nap without the usual 15 to 30 minute wrestling match that is usually required to help him settle down his mind and body. When he woke up, he was excited and off the walls a little bit, but he knew what to ask for. He asked to play in the basement where he could jump on the beanbag chair and watch signing time until he felt calm again. I folded laundry while he did this, and then when we were both done, he climbed up on the futon next to me and snuggled down with his arms around me and we watched TV together. For half an hour.

I think it’s the first time he’s held still in months.

So, it’s about time I come off radio silent.

It’s been a busy summer and I’m going to do my best to catch you up on all the amazing things that happened with short little posts full of pictures, fun stories and smiles.

If I owe you a personal e-mail, I’m going to do my best to get to those, too, as soon as I can. I’m still trying to catch up on the house and yard and a million other things. But you are in my mind and heart and I will write as soon as time permits.

Thank you for your patience, interest, help and love.