What I would tell you

I read this tonight of Facebook and it really hit home. As we get closer and closer to surgery I find myself wondering more and more about Jack's future.

What will it be like? Will he be in special ED classes? Will he be able to play t-ball or soccer? Will he always be in some kind of therapy? Will he ever just get to be a normal kid? What the hell is "normal" anyways? Will he be able to be in boy scouts? Will he ever be able to go to summer camp without us? Or on youth group ski trips? Will he drive a car? Will he survive the surgery? Will he be the same Jack-a-roo that we know and love? The questions go on and on.

I am normally really good about not wallowing in the "why him, why us, why me?" questions. It does him ZERO good and if I let that go on, it could actually do him some harm. I've actually been really good at not being a martyr about everything that Jack deals with, because I don't want him to be that way. And because even though it's really rough sometime, I can not imagine my life without Jack or without Jack being exactly who he is. I'm not going to lie though, sometimes it really sucks. Like when cutting open his head and scooping out part of his brain is the best option. So I cook, and physically doing something helps at least lets me channel my energy into something. I would walk around the world for this child if it would help, but standing in the kitchen for hours on ends at least makes a little bit of a difference. I also pretty good about not worrying too much about the above questions, until recently at least. Which is why margaritas help.

Anyways, like I said, this is what I found...

What I Would Tell You…….

© Copyright 2011 by Julie A. Keon. All rights reserved.

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Now online at www.WhatIWouldTellYou.com

the cute things toddlers do

Jack is a pretty animated little dude. He tries to comfort people if they are upset and he likes to make people laugh. He also likes to give hugs and kisses, when he's in the mood that is.

Yesterday, Jonathan got home and Jack went to hug him. Jonathan picked him up and was saying hi to him when I came up to give him a kiss. I kissed Jack and then Jonathan. Jack then puts one of his hands on my head and one on Jonathan's and pushes our faces together and makes kissing noises. It was priceless. He repeated the process several times.

Totally melted our hearts!

Guess what...

I have almost a whole day to myself! A WHOLE DAY! I thought I had a dentist appointment this morning and then I have a chiropractor appointment this afternoon (with a massage!). So I lined up a sitter for the whole day. My friend Alisa who is currently an un-employed nanny is taking care of Jack all day. Then I realized that the dentist appointment is actually NEXT Wednesday. Oops. Maybe I "accidentally" did that on purpose? So anyways, I've had the day to myself, no pokey things in my mouth, and I get a massage. It's just brilliant!

I saw a movie earlier today, now I'm sitting in a coffee house drinking hot tea and playing on the computer. I'm going to work on Jack's baby book and then go to my appointment. Woo Hoo!

This is the longest I've been away from Jack EVER. I can't stop thinking about him, about what he's doing, if he ate well, if he's having a good time, etc. But I think some time away to slow down is a good thing.

Toddlers are like that drunk college friend

Have you ever noticed that?

They are so much fun, they are always dancing around, doing something crazy.

They fall over and trip all the time, and they act like it's no big deal.

They talk a ton but don't make much sense and you say "that's great honey" even though you don't have a clue what they are talking about.

They can go from laughing to crying in under a second.

They will randomly get naked and run through the house.

They need your help putting them to bed.

They will randomly give you hugs in the middle of a conversation and tell you they love you.

If you take their drink away from them, they freak out.

They will talk to anybody, doesn't matter if they've never met before.

Your needs are completely none of their concern.

At least he has my eyes

And that's about it. Just look at them!


Jonathan when he was a baby.

New lay out

What do you think?

I know that I need to try and make the header a little bigger to fit across the top, but I'll work on that later.

It was just time for a change.

Things to do

I realize that list of things for me to do isn't exactly exciting, but it's helpful. We are starting the ketogenic diet when we go into the hospital on the 28th, both the docs agree that it needs to be tried, so that adds a whole lot more to do and organize before we go.

TS CLINIC RELATED
*Make list of questions for TS clinic.
*Done Get vaccine record.
*Laundry/Pack
*Travel food

HOSPITAL RELATED
*Figure out toys for the hospital.
*Buy a few new toys for the hospital?
*Partly Done Knit a hat to go over Jack's gauge helmet.
*Cook Jack's food for the hospital. (This isn't something I have to do but hospital food sucks and he's going to be on a super strict diet so I'd rather have yummy, organic, homemade food than frozen mushy hospital food.)
*Done Re-schedule his 2 appointments (ophthalmologist and pediatrician) that were scheduled the week we are in the hospital.
*Done Get another set or 2 of zippered pj's.

DIET RELATED
*Done Make list of question for the nutritionist.
*Partly Done Get supplies and containers for ketogenic diet.
*Get and read "the keto kid"

That's all the medical things I can think of right now. I'm sure I'll think of more as the week progresses.

bringin' him up right

Some of my favorite memories from my childhood are from spending time on Lake Travis. That being said, there is no doubt that my children will likely spend as much time as possible there too.

Right now the lake is full, the weather is hot but not too hot, and the water temp is perfect!

This was the look that he had on his face at first. He just had no idea what to think or what was going on.


But once he adjusted to the whole idea, he had a blast.


And loved watching the water.


Of course he wanted to be in the water. He wasn't a huge fan of the life jacket but did better with it than most babies do. It was difficult for us to hold him in the water as we were trying to float on cousins, but the swim platform was a big hit. The water would come up through it and he though that was great. He also though it was really funny that daddy was swimming.


While we were out we went to a floating restaurant and he really liked watching all the fish!


He had a little snooze on the way back to the marina. And napping on the boat is the best. And he slept really well last night.

Go Arizona (and ramdom updates)

First, I must give a huge shout out to Netty and Jameson! Netty is a friend in Arizona and her little boy Jameson is Jack's age. They walked and raised money for Jack at the TSC walk last Saturday. They raised $150 in Jack's name and Arizona raised $30,000 for TSC.


There is still a lot to do for our walk. The Houston people decided to drive to Dallas and walk with us there so that's one less city but more walkers with Jack. But we added one too as Jonathan's sister and brother-in-law and our niece are going to be walking in San Antonio. There isn't an official walk there but they have t-shirts and are helping to fund raise and are going to walk for Jack too. So there is still Colorado, Dallas/San Antonio (on the same day) and Oregon. I think ours in Dallas NEXT WEEKEND is the next one.

I've just about got all of the shirts ordered but as soon as I think I do, more people say that they are coming and I have to add to the order. It's a good problem to have! And we're doing great with the fund raising. If you haven't donated yet, there is still time. http://www.firstgiving.com/jack-a-roo And for those of you who have donated, thank you very much, you're support means a great deal to us.

In other Jack news, he's going through a med change. The lamictal was making him cranky all the time and it wasn't stopping the seizures. He was still have an average of 2/day and he would almost always have one in the morning. It was odd. But today is the second day on the new med and he hasn't had any in the last day and a half!!! While that is very exciting, I want to gouge my ears out with a dull object. The poor kid is miserable. Anytime we mess with the dose of the lamictal he gets fussy. So we're doing that, plus we're adding a new med, and he's teething.

It's hard to sort out what the crying is coming from. And when I say crying I mean red-in-the-face, throw himself on the floor, snot running out of his nose, crying. It's like having a 1-year-old with colic. And it goes from the time he wakes from his morning nap, until he goes to bed at night. It breaks my heart to see him so upset for so much of the day. If we're outside he goes into dull moaning mode which is at least an improvement, but when it's so hot late in the afternoon we can't stay out for long.

I saw a lump in his gums while he was screaming bloody murder and I'm pretty sure that he's getting a molar in. He's had a fever off and on of about 100.4 for over a week. I even took him to the doctor last week to get his ears check and the doc said that everything looked good. So yeah, it's been a rough week. Hopefully it will get better soon. Thankfully the weekend is coming up so that I at least have some help.

And at the beginning of the week my laptop crashed. After buying another hard drive, it's back up and running. I have more space for more pictures now. And yesterday my car exploded. Ok, that may be a tad bit dramatic, but we had to have it towed from the house to the shop. Jack and I met Jonathan at the gym down south for swimming and lunch (the only time Jack wasn't screaming yesterday). After I asked Jonathan if he heard a rattle that I heard. Then on the way home things stared to happen. Long story short, a bit of smoke was coming from under the hood by the time we pulled into the drive way. I'm anxiously awaiting the call from the mechanic and praying that it's not going to cost us an arm and a leg. I love that jeep.

I think that's it for now. I'll have some good zoo pictures to post soon. (The lap top crashing has slowed that down) We drove down to Houston on Monday to meet some friends at the Houston zoo and had a blast and we're driving to San Antonio tomorrow for a zoo trip there. 2 zoo destination trips in one week. It's a lot, but it's been fun!

Back from Dallas

Over the weekend we went to Dallas to a "town hall meeting" with some of the doctors at the TS clinic.

The hospital was awesome. The doctor was great. And it was wonderful to get to spend some time with some of the other families too. We had lunch with the head neurologist who is the head of the clinic there. He asked about Jack's treatment and he totally agrees with everything that has happened so far.

I kind of wish we would have had Jack on us so that we could have shown him off, because he's that dang cute. But my mom and Ron drove up to take care of him for us so that we didn't have to worry about him at all which was great.

We will probably have Jack become a patient up there so that we can get all of his yearly scans taken care of at once instead of running around Austin for a few weeks. The hospital will also pay for the genetic testing if our insurance won't cover it. I've got to set up an appointment with the genetic counselor to see if we can get approved.

The rest of the weekend was spent socializing, which was great. It had been way too long since we've seen some of those people! We got to see Jesus and Patty and their boys. The boys were so good with Jack, it was adorable. I wish I had a picture but I was too busy actually enjoying an adult conversation.

That night we got to see my friend Kat who moved to Dallas about 2 years ago. Kat and I met in high school. We did high school retreats together and also a few middle school retreats. Then we happen to bump into each other at a college retreat. We also went to UT at the same time and would meet up for lunch on occasion. Anyways, we're old friends. And Daniel happen to be up there for a lacross game. I stared babysitting Daniel when he was 3. He's now 20. I feel old. But it was awesome to see them and hang out. And this is the only picture I took all weekend.


Then Sunday we saw Joe (one of Jonathan's roommates in Dallas) and his wife Kim and their 2.5 kids. Kim is about to have their 3rd in about 6 weeks.

So, the weekend was great. Of course Jack slept in the bed with me and Jonathan ended up on the couch. It's amazing how much space one little body can take up. And the driving wasn't great but we made it.

And Jack continued to have seizures. Yesterday he was put on an additional med. Not what we wanted, but we need to get them stopped. Hopefully this will do the trick. The poor baby was so cranky today. I don't know if he's dizzy or his head hurts or what. He keeps putting his head down on the ground and moaning. Hopefully he will adjust to whatever is going on soon.

posting more

Dear Internet,

I've been neglecting you. You don't scream at me so therefore you go on the back burner. But I promise to update you more.

Or at least try to.

Right now, I've got pictures picked out to do Jack's 11 month letter but instead of writing that now I'm going to go to sleep and hope I make it to the bed before I pass out.

In the mean time, here is a picture of fun in the tub. Jonathan discovered that the numbers stick to the baby.

10 months old

Jack is now 10 months old as of yesterday. It's going by fast. Jonathan and I both think he should be about 6 months right now. But I do have to say that he is SO. MUCH. FUN. right now. He's hysterical, and he knows it.

He will crack himself up. He loves to dance. And baby dancing is just hysterical. He is starting to pull up on his toys and push them, which is frightening, and he's wonderfully ticklish. He's also beginning to feed himself some.

Teething has been a big issues over the last few weeks. We're actually going to the doctor this afternoon to make sure he doesn't have an ear infection because he's had a fever on and off for the last 6 days now. The poor baby has been miserable. All he's done all morning is scream.

I'm not sure if the stress of teething is causing more seizures or what. But he has been having some. They are tiny, hardly noticeable, and even when we're around other people I have to point them out, other people don't just notice them. So we increased his meds and I'm supposed to call the neruo on Wednesday and check in with him. Hopefully the teething and the seizures will be over with soon.


Oh yeah, and he bit me. As in I was nursing him early one morning and he chomped down. I yelped, he cried, it was bad. Thankfully he hasn't done it since but if that continues then the nursing will end way before either of us would like it to.

Finally better

Thank God. I'm back to normal.

I have a headache tonight but am going to bed shortly. I'm thinking a little sleep will solve the problem.

It only took 6 years

Come October we will have been in this house for 6 years. It's hard to believe. And we've always really liked it here. The neighbor hood is great as are the people. We've always talked about how we should get together with the neighbors and get to know them better. We always wave and chat briefly with the people on either side of us. We know the story about the family across the street with 6 girls, the youngest being twins that were conceived AFTER a vasectomy. And I've borrowed eggs from the people across the street. But even with all of that, we've never really gotten to know them. We've talked about it, just never done it.

Jonathan was talking with Bret from next door and apparently there was a national neighbor night out so we all grilled out on our driveway.


It was a lot of fun. Everyone brought something and the family with 6 girls was out of town so we didn't have to worry about feeding an army. There were a few straggles that just showed up but of course we had tons of food so it all worked out. The one that cracked me up was the kid, who was probably about 10, and we couldn't figure out where he came from.

We are planning on doing it again even. But next time, we're not doing it on a Tuesday night, it made the rest of the week feel really long.

Well poo

Jack is going through a growth spurt. This evening he slept from 4:30ish to 8. At 8, when he was still sleeping, we decided to change him into his pj's and if he woke up then we'd give him a bath and if not we'd just put him in bed.

He woke up a little so we started getting his bath ready. One important thing to know here is that Jack usually poops in the morning and in the evening but since he'd been asleep all afternoon he hadn't gotten to that yet. I'm sure you can see where this is going.

Thankfully (for me) it was Jonathan's turn to take a bath with Jack. While the tub was filling up we always let him have some naked time on the floor. He peed. No big deal. So he's enjoying his bath when it happens. We hear this little toot and then see poo chunks in the water. Jonathan is just trying to hold onto the baby while I'm laughing hysterically. It was friggin' hysterical. We drained the tub, filled it back up, and then he did it again.

At that point we just got him out and Jonathan hopped in the shower to get clean. Oh the joys of having babies!

Welcome!

Glad you found the new blog! This is where I will post from now on so change your bookmarks. I'll leave the other one up so that people can migrate over.

And for the first treat, I have pictures and video up from out vacation.

Enjoy!

1st Day

(Originally posted July 13th, 2009)

Today is Jonathan's first day of work. Jack let me sleep until 8 today! Well, he woke up at 6:30 ish to eat but went back to sleep after. He's still snoozing a bit but he keeps making all kinds of noises.

I've got tea steeping and we'll see how long before I need a nap :-)

Vacation here we come

(originally posted Sunday June, 13th)

On Wednesday we're leaving town for a few days. We're going down to the coast, about 4.5 hours away, for 3 nights. Jack is sleeping really well so I think we'll be fine there but I'm really worried about the car ride.

On Saturday we made an attempt to take Jack to the farm but didn't make it. He was screaming bloody murder. We pulled over and I took him out and got him calm but as soon as we got back in the car he started right back up. He was beat red and was screaming so hard he wasn't breathing. I was in the back seat and he was just looking at me like "why won't you pick me up", it was awful. I was crying too at one point.

I ordered a new car seat. It's the next size up but holds little ones too. I have my doubts about it working but it's worth a try. I'm also going to call the doctor tomorrow and see if there is anything we can give him because I think he gets car sick. He was spitting up a bit after we got home on Saturday. I also made a play list in itunes that we keep playing during the day and we'll take it with us in the car. I'm not sure what else to do, accept possibly buy ear plugs.

We are looking forward to being at the beach though. I'm really excited that we're going during the week when the crowds will be less. We plan on going to the aquarium, the museum, and the beach.

My dad is super great and he is using some of his points for our hotel! It even has an inside pool so Jack might like it. I tried to take him swimming a few weeks ago and as soon as I dipped his toes in he went postal so this is how he spent his pool time:


Hopefully this time will go a little better.

I have a feeling that we'll be spending most of our evenings in the hotel so I might even have time to blog a bit.

Sad Little Monkey

(Originally posted June 5th, 2009)

Jack has the pouting thing down. I know I shouldn't laugh at him when he does it but it's just so dang cute.

(Originally posted June 2nd, 2009)

This is one thing about motherhood that I didn't expect. I've always recycled but the rest is all new. We co-slept for a while, I wear Jack places, and we are doing the cloth diaper thing, which I love.
I wasn't sure about it before we tried it but now I won't ever go back. We had originally planned on using disposables at night and when we go out but Jack gets rashes so easily that we now take cloth with us everywhere and use them at night too. We even switched to using cloth wipes which is easier. Jonathan was worried about the ick factor but it's not bad at all, we'll see if that changes when he starts solid foods. We are very organized about the whole thing which makes it work really well.

And speaking of diapers, it's time to go change a one...