Monday, June 30, 2008

June 30, 2008...We're Back

Well, it didn't go as I had planned. There was a problem. The mirror in Jakob's playroom was cracked so I had to replace it...not an easy job. And not a pretty one either. Being the "Superwoman" that I believe myself to be, I figured I could get it down and put up another one. It was big...and very heavy. I dragged Sandy into this project and we got the broken one down ok...putting the new one up didn't go so well. We broke that one too...I only bled a little bit. So, I called in the neighbor and he put up mirror #3 without incident. I guess every now and then I do need a big strong man around.

This delayed the re-entry into the playroom. I couldn't have him in there with a broken mirror...that would have been recipe for disaster. He would have fixated on the crack and could have cut himself. If he messed with it just a little bit, it could have fallen on the floor and shattered...that wouldn't have been good. And if I would have tried to tape it, he would have insisted on pulling off the tape (he can't resist pulling off tape). And I couldn't put him in there without a mirror, he wouldn't have stood for that. The mirror is one of his favorite parts about the room..he likes to look at himself. So the mirror situation had to be fixed. And like I said, I only bled a little.

Today was the big day...we had a facilitator outreach with our girl Susan and he did great. I think he liked getting back in there and back to his old routine. He went right back to several of his favorite activities...bouncing on the ball, making lists, drawing pictures, blowing bubbles. He laughed and played a lot. It was no nice to see...and it felt like we were getting back to our "normal" life. It's finally feeling like we're past the hospital stuff...amen. That was rough and it feels good to get it all behind us.

We saw the surgeon last Thursday and he said that Jakob was "cured" of appendicitis. Relief. No one had any answers for us on the painful urination thing. It's seemed to have cleared up but no clue for sure what may have caused it. Lots of answers. Typical for the Autism diagnosis...I've gotten used to not a whole lot of answers. So I'll just keep an eye on him and try to guess if I see something that just doesn't look right.

We're slowly re-introducing all his supplements. It'll take a few weeks to get him back up and running on all that stuff. There's no doubt that the kid has some major gut issues that we have to get cleared up. Only one way to do, give him supplements and watch some more.

On our little hiatus from the playroom, we decided to put Jakob through the Sensory Learning Program again. It compliments Son-Rise and it sure made a difference for him the last two times we did it. During the first run is when he first looked at us. During the second was the first time he sat still. This time, who knows what we'll see...could be anything. I know that he loves it. He goes right in the room, lays down on the table, puts the headphones on and smiles. Then he talks and sings the entire 30 minutes. So cute. We're at the point in the program where we do the light thing at home. We go into the walk-in closet for 20 minutes, twice per day. I wouldn't be surprised if we end up in there more than twice every day...he digs it. It has a calming effect on him and he's just so chatty. We sing and snuggle. I dig it too.

Every day I see more signs of the old Jakob...the pre-appendix-bursting Jakob. He's back to testing me every now and then...with taking his supplements, taking a shower, going to the bathroom, eating a banana, going to bed. I get the foot-stomping, squealing, screaming, alligator tears...the works. It only lasts a few seconds but boy he's a set of lungs on him. It's impressive. I've really honed my skiils at being unaffected by it. I remain calm and show no signs of impatience or frustration. I've gotten really good at explaining every little move I make to him and why he needs to do whatever it is I'm asking him to do. He understands, thinks about it and then I get my way. The whole scene reminds me of me...I've always been a person who doesn't like to hear "no"...especially without an explanation of why not. So understanding how he's feeling, it's easy for me to explain, in detail, why he needs to drink his cranberry juice. If I give a good enough reason, he can't argue. I do my best to give him a really good reason the first time. It's usually pretty funny to second the scream with the big tears, the next second he's naked and getting in the shower. Sometimes it takes enormous restraint not to laugh...sometimes I just turn my head and chuckle. I just remember how it used to be a couple years ago...the screaming non-stop. We've come so far, the both of us and we've learned so much. I never would've believed that I could laugh at what I laugh at now. And I laugh a lot. I think I may have heard, once or twice, that laughter heals...

I've been wanting to get another addition to what I already have. A healing symbol. It needs to go in the vacinity of my current tattoo, I'm just not sure where yet. I have a whole page of different symbols for healing and I've narrowed it down to a couple. Funny story...there's a design that Jakob likes to draw over and over, a couple of them actually. And the designs just happen to be healing symbols...hmmm. I'll probably go with one of his...ain't that somethin'? Unreal.

This is gonna be a good week...back in the playroom, hanging out in the closet, I have a couple days off for the 4th, some new volunteers to train (still looking for more, if anyone's interested). I'm feeling good, feeling strong, knowing what I want and totally adoring every little thing about my kid. Not much else I could ask for...well, money would be nice. A whole lot of it. But that's it. Everything else is back on track and I am so happy and grateful for our healing...Jakob's and mine.

I've discovered that healing takes more than a few days and it's an ongoing least for me. I have a lot more to heal from than I realized. Every time I take care of one issue, another one pops up. There's a little thing here and a bigger thing there. Luckily, thanks to tons of reading and research, I'm figuring out the fastest fixes and each time something pops up, I know what to do to take care of it. I like knowing that and I love being able to do it. The more I read and learn, the deeper my understanding becomes of how I have to take of me in order to take care of Jakob. And I see the difference it makes in him. I know that we're gonna be more than ok, we're gonna be great. Actually, we're already great and getting better every day. The adventure continues...

Sunday, June 22, 2008

Quick Update and Speech

Still no stinkin' answer on the pee pee problem. He's still hurtin'. It's not as bad but it's still there. Nothing shows up in the urinalysis and the x-ray was normal. The pediatrician thinks it's just discomfort from the surgery. We have a follow-up appointment with the surgeon on Thursday, maybe he'll have some answers. I know I've said it before...but it should would be nice if Jakob could tell me where it hurt.

He's been home from the hospital for 2 weeks now. What a blur this all has been. For the most part, I'm pretty relaxed most of the time. I keep telling myself that if something was wrong, he'd have a fever, he'd be grumpy or crying, tests would come back abnormal...something would happen. So I'm just going with the flow.

Hopefully, I'll get him back in his playroom this week. We haven't stepped foot in there since the night he first got sick. I haven't wanted to push it since I know he's still not 100%. And I know I have to be completely comfortable and ready and I just haven't been yet. I'm getting closer though and I intend to go back in Tuesday...yup, Tuesday.

I finally got around to making the speech I gave a couple of weeks ago a little more reader-friendly. Here it is...without all the extemporaneous stuff I stuck in as I went along. This was given to parents and professionals at an event for Children's Hospital Department of Psychiatry...the theme for the evening was "Whatever It Takes".

(Have I ever mentioned that I love public speaking?)

Thank you so much for having me. I'm thrilled to have the opportunity to talk to you tonite about the things that are nearset and dearest to my son Jakob, his diagnosis of Autism, what it's like to have an amazing and special child like him and how you do whatever it takes, as parents and professionals, to make all the difference in the world for kids like Jakob.

It's been a bit of an adventurous week for Jakob and me. Last Thursday around noon, we brought him the ER with a suspicion that he might be suffering from appendicitis. Around midnnight that night, he had an appendectomy. Unfortunately, his appendix had burst and it was quite a mess. We're still living at the hospital and will be there until at least Sunday. For most kids, when this happens, it's a day or two and they get sent home to continue treatment there. But not for us...

Because of Jakob's Autism, we need to keep an eye on him 24 hours a day and monitor his condition very closely. Since he is still technically non-verbal, he can't tell us how he's feeling or where it hurts so we're left to watch him and make our best guess. There's a risk of infection, an abcess forming which would require a second procedure to drain it and he has a picc line inserted up his arm that runs thru a vein close to his heart thru which antibiotics are administered. That picc line would be very easy for him to pull out...we're doing whatever it takes to make sure that doesn't happen.

Jakob doesn't understand what's going on...all he knows is that it's kinda noisy (as all hospitals are), there are strange people coming in and out and they like to poke at him with cold instuments and invade his space. He doesn't feel so great and he wants to go home. There's really no way to explain to him why he's there or why all of this is happening to him. So we do whatever it takes to keep him calm, entertained and peaceful. He's doing pretty great, all things considered.

The care that we have received at Children's has been nothing short of awesome. The entire staff has done everything in their power to make us feel safe, warm and cared for. They've been so willing to work with me to not only understand Autism and how it affects Jakob but also to change the ways they normally do things to make it easier on my little man. The respect that I've been shown is so very appreciated and will never be forgotten.

I first knew something just wasn't right with Jakob when he was just an infant. He wasn't hitting his develpomental milestones....he didn't babble, he was very stiff, didn't like to be held, cried all the time, never looked at us, didn't play with toys the way they were intended to be played with and just really didn't seem to like me very much at all. As he continued to grow, all the classic signs of Autism began to appear...he lined all his toys up, he would do the exact same thing over and over, turn cars over to just watch the wheels spin, jumping, toe-walking, hand eye contact, no language.

I remember our pediatrician (not from Children's) telling us that he was just a boy and boys develop slower...that we shouldn't worry...even if he did have autism, he was only a "little Autistic". We asked for a referral for a speech evaluation and he said, "Why do you wanna put him in speech therapy? All they're gonna do is play with him...can't you do that yourselves?" Needless to say, we switched doctors...

Jakob finally received the official diagnosis at 3 1/2...the therapies began and I continued to search for answers on my own.

Looking back, it wasn't the diagnosis that was so was the prognosis..and the never-ending stream of "I don't knows"....will Jakob ever speak? I don't know. Will he be able to take care of himself? I don't know. Will he ever go to a typical school and have friends? I don't know. Will he ever look at me or even care that I'm in the same room as him? I don't know...

The prognosis turned into an overwhelming wanting and needing of help and not knowing where to go for it. There was this unbelievable feeling of urgency because all the difference could be made with early intervention so something had to be done and fast. It was the prognosis that caused us to stop looking at all the things Jakob could do and to focus on all the things he couldn't do and to try to figure out how we were gonna fix it.

So what came next was inevitable...the anxiety, stress, panic, sadness, grief, insecurity, uncertainty, fear, anger, frustration, guilt...the are we gonna pay for everything he needs? How are we gonna to live like this? What therapies do we try? Will it ever get easier or will it always be like this?

Only parents who have gone thru something like this can truly understand. We learn quickly that family, friends and co-workers don't know how to help, don't know what to do for us. Some may try but few can truly comprehend what our lives are like. We become an island in a sea of our diagnosis/prognosis...with little to no support.

Somewhere along the line, many of us lose sight of the beautiful child we brought home from the hospital...the perfect little being who was the greatest gift we'd ever been given...the perfect addition to our family.

And as it is with all things in life, what we focus on just gets bigger, it expands and grows. And it's tough to not focus on what's right in front of us day in and day our case with Autism, it was the screaming, the crying, the tantruming, the no sleeping, the running, jumping, throwing, crashing, the doing all the things we don't want them to do and not doing anything that we want them to do......the sleep deprivation...the sheer exhaustion.

With all of that mixed in with the rollercoaster of emotions, we no longer see the child who's just doing the best that he or she can to manuever thru a world that they just see and experience differently than we do.

All we can think about is how to fix it, how hard it all is and how people need to understand our children, how they need to understand our lives and how everyone should accept our children and us. Some of us even kick and scream ourselves in an attempt to get people to listen to us and understand something we ourselves haven't fully grasped.

It can become a vicious cycle that can easily take over every minute of every day and all we can try to do is make it thru.

It was about 16 months ago when I decided enough was enough..I was tired of feeling sorry for myself and for Jakob. I made the decision that life was supposed to be fun and darnit, I was gonna make sure that it was and I began to focus on all the things that Jakob could do and all the cute, funny "quirky" personality traits that made him who he was.

I began to really grasp that I know Jakob better than anyone...better than any doctor, therapist or specialist. I knew what he was thinking, feeling, wanting, needing...what approaches worked and which didn't. I still occasionally have to remind myself of that...and of the fact that he trusts me more than he trusts anyone...he feels safest and most at ease with me...and if I'm feeling stressed, rattled, angry, frustrated or sad, even if I try to hide it...he knows and he will feel the same way. That's why I'm always doing my best to set an example for him of how to be an easy-going, happy, peaceful and loving person...haven't perfected it yet, but I'm getting there.

Mother's intuition is so much more than a catch's a feeling so deep in our core that if we can calm down enough to listen to it, it will lead us directly to all the answers we're looking for. It will lead us to the diagnosis, to the best treatment, to the best physicians and therapists and the best way to live our everyday lives with our children.

That inner voice that we as parents have is so powerful...if we can find it, hear it, listen to what it's telling us, nothing is impossible...nothing. And life becomes so much easier for eveyone involved.

Once I really started to pay attention to that voice, everything fell into place for us. I found the autism treatment that fits us to a tee and in the 4 months that we've been doing it, my "non-verbal" 6-yr-old has gone from saying one word to saying over 10 words clearly and trying to say at least 200 words. He looks at me all the time, I get hugs and kisses without having to ask for them and instead of jumping on a trampoline all day watching videos and not caring if I'm in the same room with him, he takes me by the hand, sits me down and wants me to play with him. It's so wonderful.

I've been doing whatever it takes to listen to that inner voice...

The biggest hurdle to be aware of with that inner voice? Not living in the present moment...guilt about the past and worry about the very, very, very easy to get caught up in. I know...been there, done that. Truth is...ain't nothing we can do about what already happened and the only thing we can do about the future is do the best we can right now. The only thing we have any control over is the right here, right why don't we just live the right now to it's fullest?

It may take a little practice...but it can be done and when you do it, you'll'll feel it and you'll love it. For parents and professionals...the next time you're with your child or the child you're treating...forget about what happend 5 minutes, an hour or two days ago. Don't think about what you're gonna do later that night or next week. Forget about the laundry or the jerk who just cut you off in traffic. Just be 100% present with that child and in that matter what that moment is. There's no better feeling than really being there, and the child you're with will feel it too...amazing things can and will happen. Do whatever it takes to just be there.

I always thought that I did that...I always thought that I was a pretty good at really paying attention and being aware of Jakob's needs. Then I locked the two of us in a playroom with no tv, no battery operated toys and no computer. I began to let Jakob take the lead and do whatever he wanted. I had the room filled with all of his favorite things and turned him loose. Whatever he wanted to do, he did and I did it too. I was completely focused on him...where he was and what he was doing. I really got into the activity he was involved in...whether it was bouncing on a ball or writing lists on a white board. I joined him with lots of energy, excitement and enthusiasm. I accepted him for who he was and didn't judge him. I began to see the world thru his eyes. And he began to see me as a person who understood him completely, a good friend who not only loved him unconditionally but enjoyed doing the same things he loved to do.

It was a huge turning point for us and continues to be. When I join Jakob in his world of Autism, he's more willing to join me in my world. The 3 hours every day that I spend with Jakob in his special room is by far the best part of my day. And every day before I walk in, I do whatever it takes to remind myself to be present and live those 3 hours to the fullest...100% there in that room with my Little Man who is always doing the best that he can...whether he's jumping on the trampolines or telling me to draw a barn with a cow, a dog, a pig and a cat and 4 flowers (always 4, never 3 or 5, always 4).

A great benefit of learning to really be there is doubt just melts away. The doubt about if we're doing the right thing, the doubts about what our child can do, the doubt about what they see and what they know. We begin to truly believe in them...and we have to. As parents of these kids, we're the only ones that can and often the only ones that do. And if we don't believe in them, how can we expect them to believe in themselves? Do whatever it takes to believe...

Believing leads to faith...we discover a faith in what they're capable of, faith that all is truly well, faith that everything's gonna be ok and faith in ourselves that we are always doing our best and giving everything we whatever it takes to have faith...

This whole process of being there, believing and having faith takes care of the future. All of a sudden there is hope for the future where before there may have been uncertainty. If we're believing in our kids, having faith in them and ourselves, and being present in the moment, we know that no matter what the future brings, everybody and everything is gonna be alright. And we sincerely and completely see our child and our situation as a blessing. Not only does our child get better, we do too.

As a parent of a child who is different, and that's all he is...different than most, I have become a better person and a better parent. I know the parents here tonight know exactly what I mean...we've all heard the sayings "God doesn't give you more than you can handle" and "God gives special children to special people" and "everything happens for a reason"...all of which may very well be true.

But the choice is ours as to what to do with what's been given to us. We can be angry about the rotten hand we've been dealt, we can feel sorry for ourselves, we can expect everyone around us to make it all better or we can decide that we're gonna make the best of every moment we have and learn the lessons that our children are here to teach us.

There have been so many lessons for me throughout this journey that have changed the way I see the world, what I think is important, what I think life is all about, who I really am and what I really want.

Jakob has taught me so many things...patience, compassion, understanding, acceptance, that different is more than's cool And he's definitely taught me that the world doesn't revolve around me...I am sooooo not in charge.

He's taught me that "stuff" doesn't matter...the house, the car, the handbgs and is about relationships, loving, giving.

He's taught me that I can survive on 4 hours or less of sleep a night...

He's taught me to be grateful for everything in my not focus on all the things I don't have but appreciate everything I do have.

I've had some pretty big reminders of that one this past week...I've seen some things at Children's that brought back to mind something that my dad used to say to me all the time..."no matter how tough you think you have it, there's always someone who's got it tougher"...

I'm sure that's something that those of you who work at Children's are reminded of every day and I commend you for having the strength to take on the jobs that you have. I'm always in awe of people who choose to make their life's work changing the outcome for others. I marvel at your ability to take on the challenges that other people face and do your best to make a difference.

I know it has to be hard sometimes and I'm sure you've asked yoursleves "why did I decide to do THIS for a living". (Hey...I ask myself that pretty much on a daily basis when my alarm goes off at 4am.."what was I thinking when I decided to do a morning show????"). But you get up and you do it. You do make a difference. You do change the outcome. You do help families like mine who are so overwhelmed and confused and unsure what to do.

For some of us families, you're all that we have. We parents know what tends to happen when you have a child that's "different"...friends, family, co-workers...they distance themsleves...they don't know what to do or say to help or make it better. You become our friends and family because you do understand, you care and you help. We need you, we appreciate all that you do. We're grateful you chose to make this your life's work and there are days when we don't think we could make it without you. And maybe we don't tell you that enough...sometimes we just get too caught up in our own crap. Sometimes we just need someone to be upset with. Sometimes we need someone to blame. Ya know, we treat you like we treat family sometimes. But know that there is always love here for you...and lots of it.

So please, continue to do whatever it takes to help families like mine. Help us know that we're ok and that our kids are ok...they just need a lot of love, understanding and patience. And help us know that everything's gonna be ok. We need you...we need your knowledge, expertise, compassion and your friendship. We need to be able to come to you with our deepest, darkest secrets and our fears and we need you to help guide us to the answers. We need you to remind us sometimes that nobody knows our children better than we do. We need you to help us feel calm, cool and confident amid the chaos that some days bring us. We need you to help empower us so we can believe and have faith.

Everyone in this room is facing a challenge...some by choice, some not. And it's up to each of us to decide what to do with that challenge. I hope for everyone here that you choose to face it with confidence that you are doing the right thing, that you're always doing the best that you can and that the children that you are here tonite representing are doing the best that they can too in a world that they simply see and experience differently than we do.

Thank you so much for giving me your time tonite, I've loved being here with you. I wish you nothing but the best in your adventure and I hope you continue to do whatever it takes to teach your children what we all as parents and caregivers want most for experience, peace, love, joy and happiness. When you live in the moment, believe and have faith...all things are possible. Thank you.

Sunday, June 15, 2008

Silly Fear

Happy Birthday to, 30-something...doesn't seem that long ago that I was 27. On second thought, yeah it does. It was eons ago. I'm ready to stop counting...

For the most part, Jakob's recovery is going well. He's eating and drinking, peeing and pooping, no abdominal pain or fever. Only problem...cloudy urine and painful urination. Symptoms pointing toward a urinary tract infection. He's at his dad's and I'm waiting for the call that he's peed in a cup so I can take it down to Children's for testing. They recommended we take him to urgent care but we would've waited for days for him to pee there so we talked them into letting us collect the sample at home. I hope this goes smoothly, that it is just a UTI and we can simply treat it with antibiotics...

It's been a weird week for me. I've been caught between 2 worlds...the world of hospital living and the world of living at home. I've wanted everything to get back to "normal" but can't shake the need to constantly hover. I've sensed that he's still not quite feeling great...of course, I've been googling...never a good idea. I don't recommend that to anyone. The possible diagnosis for cloudy urine and painful urination are frightening. It's a UTI, that's it. I've decided.

This is one of those times that I need to follow my own advice and live in the present. I'm doing everything I can and worrying about stuff that I have no control over is not only useless but exhausting. Anxiety ain't fun. Life is supposed to be fun. So I'm having fun sitting here on my birthday, thinking about cloudy urine, damnit. This is fun.

Prior to the cloudy urine, I had decided it was time to really look at the lessons in this big adventure. The a minute...I wish he'd pee already. I knew I should've taken a nap earlier. I'm still wiped. And now I get to make a trip to the ER with urine in a bag...and wait for the results, get the antibiotics and take them to him. I want it to be a simple process. I'd like a simple process. Really.

Here I go again, getting all worked up with worry. Let's talk about worry...gotta let go. Gotta focus on things that I have control over. I can control driving the urine to the hospital. I can control getting the prescription, I can control making sure he takes the meds...but that's it. So all I can do is that. All is well. Jakob is fine. He is. I know it. So enough's just silly.

I would be able to feel that at a deeper level if he were here under my nose...four deep breaths...ok, I'm good.

A couple of the big lessons...

Nothing is more important in my life than Jakob. Nothing even compares. Living in a hospital room for 11 brainer. Not sleeping all night just to make sure he doesn't pull out an IV, no biggie. Remaining calm in the midst of chaos...if it means keeping him calm, easy. Taking everything as it comes, got it. Looking in his eyes, focusing on how he's feeling and what he's thinking...that's the best thing I can do for him. Everything else??? I can deal with all that later...the mortgage, work, email...later.

Another big one...I have wonderful family and friends. My Mom rushed to be here to help for 12 days. She just dropped everything to help me out and look after her grandson...she's gold. Dad was constantly calling to check in. My friends were calling and emailing like crazy. The Autism community was keeping track of us and sending out thoughts and prayers. There was so much concern for Jakob and me. It was so nice and it helped so much. We're very blessed.

It really was a big lesson in being present. No matter how tired I was or how scared I was feeling, when Jakob needed me to be there, I was present. When he woke up and was panicking from all the wires, the hospital room, the strange faces, the pain and the anxiety, I became incredibly present. I looked in his eyes, spoke softly and calmly to him, assured him everything was ok. I told him that I understood why he was so unhappy and I promised him that I would help make it easier. I was totally present with him and I know what a difference that made. Being present when he doesn't want to take his supplements is nothing compared to that. If I can hold it together during major drama, the every-day stuff is a breeze.

(a few hours later...)

Took the urine sample to Children' just gotta wait. Something about an initial screening and then having to wait 48 hours til we know for sure. Whatever. I guess if they're not all worried about it, I shouldn't be either. No worries, all is well.

I'd love to quote my psychic...I got an email from her today. Now there are some that think she's a little nuts. I'd call her eccentric, sweet, loving and kind. She's a good person with a huge heart and I dig her. Maybe she can see the future, maybe not. Either way, she often says just the right thing at the right time. She said, "Ok weird thought. Do you think of your son as other than a perfect way God is manifested? He will reach your expectations. And more. Expecting him to have a problem he can't fix is not asking him to reach. Be sure and don't limit him with your fear."

She makes a really good point. Jakob is perfect. I know that. Sometimes I need to remember whenever I get caught up in the fear. The fear I experience now is nothing compared to where I was a couple years ago. The fear then was disabling. Now, I'll get a little anxious and start googling a little...that's nothing. Two years ago, I never would've been able to handle the past few weeks. I feel pretty good about that. We're both doing great.

Someday I'll share everything I told him in the hospital...I know my little speeches made a difference. And I know he's healing. All is well. I know. I really know.

Monday, June 09, 2008


Jakob came home last night and he was so happy to be here. He smiled, he laughed, he tried to jump up and down. He watched his favorite movies, sang along and giggled. It was so cute. He climbed gladly into my bed and fell asleep around 11:30. What a sweetie.

We're gonna have to keep a pretty close eye on him for the next few weeks and keep him relatively jumping around, no crashing. He's pretty skinny and kinda pasty lookin...that should improve pretty soon. He's back to eating and going to the bathroom as usual.

He's not with me right now and I'm not handling it too well. After spending 10 days straight living with him in the hospital, it's a little tough to not be watching over him now that he's home. It's pretty crappy...

It's gonna be awhile before I recover, I think. I held it together pretty well, all things considered, and now the adreniline has run out. I'm just gonna go to bed early tonite and rest up for my little buddy for when he comes home tomorrow. I can't wait to spend some quality, home time with him. Sweet dreams...

Saturday, June 07, 2008


Friday 9...10:45pm...

I'm so exhausted that I'm about to burst into the sobbing, uncontrollable, can't catch my breath, couldn't talk if I wanted to kind of tears. Sheer and utter exhaustion.

Jakob fell asleep about 15 minutes ago and I've been waiting to make sure he was really asleep before I got out the computer. I got weak this afternoon and I caved. One of the nurses brought in a laptop, Jakob saw it and was going for it. I was out of the room at the time and when I returned, my Mom was just grinning. Jakob had written on two different white boards "Mom, Computer"...I couldn't say no. The kid's in the hospital for crying out loud. He's been thru quite an ordeal. He knows I have it and he knows I can't lie to him and tell him I don't so I caved. More than 4 hours later, I got sneaky and unplugged it. My battery is pretty much shot so it only took about a half an hour for the thing to die. He looked a little sad but just shut it and sat back on the bed. He was having a pretty good time with but I was reminded why I hide it at home...there's no way anything I can do can compete with a computer.

And in all honesty, I was too weak and too drained to do the song and dance routine to keep him happy. Granted, it may not have taken much to entertain him but I am so far past wiped that I don't have an ounce of that kind of creativity in me. The computer gave me a break. But not will be gone.

It's looking like we're heading home Sunday night. They'll give him his last dose of antibiotics, take out the picc and we'll be on our way. Of course, only if everything continues to go smoothly which I believe in my heart it will.

He ate 2 hot dogs and several little bowls of cereal today and he drank some water...finally. So we were able to take him off the IV fluids. That made us both happy. He's not nearly as restricted and can get up and move around pretty easily. Today was the first day that he really had pretty good balance while standing up. He's been pretty wobbly and he kinda leans forward. You can tell he's sore. Tonight he really whined when he peed...the doctor is having us watch him. He thinks it could just be some internal soreness from swelling in his abdomen. A UTI is possible too but we're not seeing any of the other symptoms for that. Wait and watch...2 of my favorite things to do.

Now I'm really close to an ugly cry...where my whole face scrunches up and either I start snorting snot or it runs all down my face...we're supposed to have a patient attendant here and it's not looking like we're getting one...which means I'm up again all night. I don't know if I can do it, I really don't. This is too much. I think I've already overdosed on coffee and diet coke...the caffeine isn't working anymore. Bawl like a baby or get pissed off...tough decision...neither one will solve the problem so why waste the energy.

I'm just so glad that Jakob is doing so well. This whole event has had some scary moments. He's so strong and such a little trooper. He's really done so much better than I could've ever imagined under the circumstances. I give most of the credit to Son Rise. He's just so much calmer now, so much more easy-going, so much more tolerant and patient and connected to people. I'm so proud of him. We've barely even had to give him any meds for anxiety...none in the past 30 hours. No pain meds in at least 12. I'm so proud of him.

Sleep is over-rated, I'll sleep when I'm dead...sleep is over-rated, I'll sleep when I'm new mantra...and it's not working.

We had an attendant last night...and Jakob was up til 1am. So, I got 4 hours sleep. A record for our stay here, I think. And the girl we had was so cute. She spent the night coloring with Jakob's markers little signs for his door...his name, a rainbow, some clouds. She was sweet...why the hell didn't they send her back here tonight????????????

Positive thinking, positive thoughts. There's always somebody who's got it worse than me...Jakob is recovering, this too shall pass, we'll be home in 48 hours, I'm wearing a cool shirt.

I had a ball last night at my speaking engagement. It went pretty well. Considering I wrote the majority of my speech during my last sleepless night, I felt pretty good about it. If I would've had just one more hour, I think it could have been time. I'll try to do a little editing to make it more print-friendly and I'll post it soon...I think I'd fall asleep if I tried to do it now. If I'm gonna write, it has to be new material.

Maybe I should just cry and get it all out...but crying is tiring and would just make it worse...sleep is over-rated and I'll sleep when I'm dead...

He's been sleeping for over an hour now and hasn't moved a muscle. It's at the point that I think the likelihood of him pulling anything out is slim but I just can't risk it. And I know if I did leave him unobserved and allowed myslef to fall asleep, I'd either be really restless from feeling like I wasn't doing the right thing or I'd pass out so deeply that I wouldn't be able to wake up if I needed to...either way, laying down is a bad idea.


A very kind nurse just came in to sit with Jakob so I could go downstairs and get my 8th cup of coffee today. I gave up coffee months ago (occassionally, I'd have one) but this past week, I've been back big-time. I just haven't known what else to do or try. Light and extra large, please.

I've had so many friends call and send emails this past week, all sending their thoughts and prayers. Even got a bunch from people I've never very nice. I feel so blessed to have so many people thinking and caring about my little guy. If you were one of them, thank you. I know that all that thinking and praying really works. I appreciate it so much.

I've made a decision...I'm gonna put down the computer, sit here in this rocking chair and go on a rampage of appreciaton...nothing can beat that. I'm gonna just rock back and forth and think about all the things I'm grateful's a very powerful exercise...I may even throw in an "om" here and "om, I'm so grateful for my king size, memory foam bed at home that I'll be sleeping in only 48 hours from laying next to me in that bed, a happy, healthy 6-year-old boy who's feeling"...

Thursday, June 05, 2008

Who Needs Sleep??

Day 5...I think. Yeah, it's Tuesday...10pm. As the rest of the Tri-State runs to the basement to hide from the tornadoes, I watch a sweet, innocent and confused little guy sleep.

He's definitely feeling better, I think. It's just so hard to minute, he's smiling. The next, he winces. According to the doctors and nurses, medically he's doing just fever, his abdomen is soft, he's passing gas...but, they've got him back on fluids. He's not eating or drinking anywhere close to enough...don't like that.

The pic line went in last night and I can tell it'll make life easier for him but it's annoying him. We have to watch him every second, even when he's sleeping, so he doesn't pull the darn thing out.

I'm tired, no doubt about it and I still have my moments of near-panic. At this point, it feels like it's more about the Autism than it is the surgery. He's healing but he wants to go home and doesn't really care why he can't. The only time he ever wears shoes is when he goes he was asking for his shoes and pointing to the door.

A hospital is pretty much sensory overload all the time. People coming in, checking stuff, poking at him, sticking stuff on him. There's tons of noise with all the equipment beeping, lights flashing, people talking, different people in and out. I've been pretty impressed with his ability to deal with all of it. The tricky part is getting him to stay asleep...he's a light sleeper and the poking, beeping and talking can wake him up pretty easily. And once he's up, he can be up for awhile. He's tired too.

He's been able to stand on his own for a minute or two and has taken a few steps. We put him in a wheelchair tonite and took him for a ride around the floor. He liked that a lot but sure didn't wanna go back to the room. He shed some pretty big alligator tears. I hadn't given him any anxiety medication in well over 36 hours but I whipped it out tonite. I don't like drugging him but I know there's a line on how much frustration he can take. I want to avoid getting too close to that line as much as possible...better safe than sorry. And the stuff we're giving him ain't all that powerful and it's only for while we're here, I know he won't need it once we're home.

They told us today that we'll for sure be here til Sunday or Monday and I'm ok with that...actually, I think it's great. Once again, with the pic thingy, the antibiotics, the risk of an abcess and everything else...better safe than sorry.

This past week will be going on my list of craziest weeks ever. A new and different experience.

Sometimes, I think back 10 years ago and remember what my life was like. I never would've guessed I'd end up here. I never would have imagined being a Mom let alone a Mom of a very special little boy. People who knew me 10 years ago wouldn't recognize me now, I'm so totally different.

That used to freak me out a lttle but not anymore. I really love my life the way it is. I don't miss the parties, the drinking, the wild weekend trips, the concerts, the bars, the clubs, the hangovers...the whole scene. I mean yeah, it sure was fun, we had a ball and it was great but this is really great too. I love taking care of Jakob and doing everything I can to help him be happy. I love my Autism families that I get to spend time with. I love doing things in the community like help plan a walk or speak at an event. There's nothing else I'd rather do. I know that's tough for some to believe, but it's so true. I've found my purpose and I love, love, love it. Ya know, they say when you find your purpose, you can go, go, go without getting exhausted or bored or annoyed. I get that. Got my purpose, just need to define exactly what I'm gonna do with it...

Little Man is now receiving his super-power antibiotics thru his new pic line. I'm hovering in the dark, keeping an eye on all 10 fingers. We're half-way there, only 5 more sure is easiest when he's sleeping...

Wednesday, 2am...

Well, I thought that maybe I'd have some time to write during this hospital stay and I've gotten my wish...

I've now been up 21 hours straight with no relief in sight. We're supposed to have a patient attendant with us at all times but she got pulled at 8:45 last night and hasn't been back. Jakob's father called at 9:30 and was supposed to come back to the hospital but I've not heard from him. It's me and Jakob all alone and he has to be watched at all times. I sit in the dark with my is on.

I'm supposed to leave for work in about 3 hours but it doesn't look like that's gonna happen if there's no one here to be with, I don't have a car...guilt is setting in. I have to remind myself that there's no place more important for me to be than right here...and certainly, my co-workers are more than capable of handling it without me while we go thru this.

So many of the Autism Moms I know are able to stay home...or choose to or have no choice. I try to imagine what that would be like. Sometimes I think it sure would be a lot easier to only have to focus on Jakob and the house. Then I have days when I think wow, never a break from Autism and the house. I go back and forth. I'm just so very lucky to have people at work who understand and are compassionate about our situation. I know plenty of Moms who works in places with people who aren't that way.

Work has been another place in my life that has experienced a big shift in the past 10 years. When I was in my 20's, I was the girl on the radio who was at every happening club, dancing on the bar with the microphone and buying everybody shots. I was skinny with new boobs. I was hosting male reviews. I signed off every day by saying "I'm heading out for a cock....tail, straight-up".

Now, I'm the Mom with the "special" child who loves to host fundraisers and give speeches about Autism. Once again, I'm totally cool with that. I do have times though when I feel like I'm not doing my part...I don't make it to every Party at Sawyer Point or every concert or station function. I can't drive around every afternoon in the Whatever It Takes RV. My schedule is tight and pretty inflexible. It's during those times that I have to remind myself what it's like to give one of those speeches or host one of those fundraisers. It's the right thing for me to do and I'm doing what I'm best at these days...that counts for something and I hope it's making a difference...I sure want it to.

I'm hungry...

Thank God this hospital has Starbucks...

When do the donuts from Busken get here???

But it's funny...that whole purpose thing, I'm physically drained but not too slap happy. I dig this writing thing. I'm giving a speech Thursday night and I got most of it written while I've been sitting least I'm getting things accomplished (in addition to keeping an eye on the most precious thing in my world and keeping him safe...mulit-tasking at its finest).

Jakob sure does move around a lot when he sleeps. I think it's a hospital/appendectomy thing. He usually sleeps with me at home and I never notice this much activity...good thing I'm watching...he has plenty of opportunities to start grabbing at stuff...

I wonder what I'll be like tomorrow (later today) when he wakes up. I sure hope I can be alert and on my best game so I can entertain him and keep him happy. I know there will be other people here that he loves but ya know, there's nobody like Mommy. He loves the silly faces and sounds I make. He digs animation and I don't think anybody's as animated as I am...maybe I should have gone into the theater. I did wanna be a dancer on Broadway. I took 11 years of tap dance, ya know...someday, I'd like to be just famous enough to be a contestant on "Dancing With the Stars"...

One thing that's been great while we've been here, he's only saying "no" one time instead of's so cute but getting a lot of use. No matter what I ask him, he says, "no". "Jakob, do you want a movie?"..."no"..."Do you want a drink?"..."no"..."Do you want some O's, a banana, a hot dog?"..."no, no, no". "No matter what I ask you, are ya gonna say 'no'"...."no". Makes me laugh.

His one front tooth is so loose. It's gonna be gone any day now. I hope he doesn't swallow it. I'm really gonna miss those 2 baby teeth. I've always loved that big space between them. And baby teeth are so cute. When the big ones first come in, kids look more like walruses than kids. Maybe I am getting slap happy.

I gotta get this kid eating and drinkiing soon. I want him off IV fuids. I want him off this machine. If he'd eat and drink, he'd only have to be hooked up to this thing twice a day for 30 minutes getting his antibiotics. Then he'd have the freedom to run around a little bit. Well, not exactly run around since he's only been able to take a few steps.

I haven't been home in almost 6 days and the clothes that my sweet Mom has been bringing me aren't my finest. No make-up, no curlers, no conditioner, no razor, no tweezers...a bra with underwire. I hate not comfortable. I'm not feeling pretty.

I bought matching shirts for Jakob and me at the gift shop today.."Team Cincinnati" 3/4-length groovy. I love Nick Lachey, ya know. I have a pair of his pants.

I can only imagine, when this is all over and Jakob's back home and everything's back to normal, how far behind I'm gonna be on everything. I know when we came here, my to-do list was pretty out-of-control and there's stuff that needs to be added to it. Oh well, I'll get done what I can when I can...not much else I can do.

I wonder if the reason Jakob's father is a big fat no-show is that a tornado picked him up and carried him away???

I had a couple quick glances at the weather reports but I really don't know what's been going on. I've been pretty detached from the outside world for the past week. And I don't miss it one little bit. I don't miss television. Sitting in front of that box and getting caught up in other people's lives or made-up lives just doesn't do it for me anymore. I do like to watch Ellen and Oprah every once in awhile and I do love "Dancing With the Stars" but that's pretty much it. And I do want to do dirty things to David Cook...but I don't know if that counts.

I put out flyers looking for volunteers for our Son Rise Program and I've gotten a couple calls. That'll be fun to get rolling on. I know a big reason that all of this has gone as well as it has is Son Rise. He's calmer, cooler and more able to take all the craziness. I'm so proud of him. I know 6 months ago, we would've been dealing with a completely different who would've been throwing fits for the past 5 days. He still picks his nose and eats it tho...I think he does that just to make me's the one thing that gets me every time...even tho I don't react to it, he knows.

I think he's so squirmy dues to gas. Apparently, passing it is a really good sign following any kind of GI surgery. I know he's having gas pains...he'll wimper a little and then ta-da...then he smiles...not as big of a smile as when he does it in the tub but a smile nonetheless.

2:45...only 4-5 hours until Mom gets here...where's that Starbucks and has anybody seen the Busken truck?

Tuesday, June 03, 2008

To the ER

I think it's Saturday...yeah, it is. We're in Chilldren's Hospital, we came to the ER Thursday around noon. At around 11:30 Thursday night, Jakob had an appendectomy and it was messy. It had burst and they did their best to get it all cleaned up.

We're gonna be here at least 10 days pumping some big-time antibiotics in him to fight infection. And we gotta keep an eye out for an abcess...since it had burst, there's a good chance they didn't get all the fluid out and it could form an abcess. If that happens, it'll present just like the appendicitis and they'll have to go in to drain it.

I could go on and on with all the details but I don't think I's kinda overwhelming and tiring. But I feel, at this point, that we have a pretty good handle on good of a handle as possible.

Darnit anyway. I knew. I did. I suspected it when the vomiting kept going. And how weird is that? A kid's throwing up...doesn't everybody think flu? Or food poisoning? Not me...I thought appendicitis. It was my gut telling me, that whole motherly intuition thing kicking in and again, I didn't listen. Just like the Autism. Lesson learned, difinitively...listen to intuition, that inner voice. Screw common sense and analyzing....I got a higher power than that at work and it's a lot easier just to pay attention to that. Lesson learned. Darnit.

So here we are, in the middle of another big adventure. And as with everything, it's as hard as I decide to make it. I will admit that this challenge is a biggie and I've found it to be, well...challenging. I've had my knots-in-the-stomach, wanna vomit, light-headed, borderline panic attack moments. Like when we were home before we came to the hospital, in the car, in the waiting room, during the testing, during the to say that there have been more than a few times that I haven't felt very well. I feel my best when Jakob's sleeping and I can just look at his sweet little face and watch the monitor...heart rate 119, breathing 98%...all is well.

The first time he really woke up after surgery was our roughest moment. He opened his eyes in a strange place with strange sights and sounds and he was hurting. He had an IV shoved in his arm that was wrapped heavily so he couldn't get to it and attached to a board so he couldn't bend his arm. He had a catheter, a monitor attached to his toe and more monitors on his chest. There are 3 holes in his belly that are taped up. It was sensory overload. His pain meds hadn't kicked in yet and he really really really wanted all the stuff "off". To put it lightly, he was freaking out...understandably. All I kept thinking about was Sally Field in "Steel Magnolias"....I totally saw myself running back and forth at the nurses' station, screaming "my son needs pain medication and get me something to relax him...NOW". He kept reaching for everything, trying to yank stuff out. And he was in obvious distress, totally confused. I knew I had to stay calm since he would just get more panicked if I was...not sure how good of a job I did with that. He eventually calmed down, I think just out of pure exhaustion and we eventually got him all the meds he needed.

Since then, we've had a few bouts with the IV, he keeps getting the thing off his toe and if we don't watch him closely, he'll mess with the incisions. Gotta keep him distracted as much as possible...good thing I didn't get rid of all his DVDs...

(Sunday morning)

Today he gets a chest x-ray, his breathing isn't where it should be and we'll be gettng him up and moving around as much as possible. Now that we've cut back on the morphine, he's awake more and we have to scramble to keep him occupied. Thank God, my Mom is here...she's good at keeping him busy and she moves quickly, fast is critical.

I think he's in some pain, he's obviously tired but not sleeping too great. It's probably from coming down from the morphine and he's a light sleeper anyway. There are always people coming in and out of the room and lots of noise in the hallway. He's about half-asleep right now with the sheet pulled over his head. The attached monitors and the IV are really bugging him and that's not helping either.

He's been so good, really, all things considered. He's just so sleepy and he's weak. Every once in awhile, he points to the door and says "that way". He's ready to go home and I can't blame him one little bit. We're doing everything we can to surround him with his favorite stuff and we'll see in the next day or two if it's working.

I had to laugh...there's a white board in here where they write all the nurses names. He noticed it yesterday when he was still pretty out of it. He pointed at it and said "bipe" (wipe)....pretty funny. So needless to say, we are on our own to remember everybody's names.

I can't say enough about the staff here, they've been really wonderful. They probably think I'm a little nuts but I"m sure I'm not the first Mom to pace around asking a ton of questions. I've asked if boogers count as solid food, why the DVD player is in French and if there's a special room for ex-husbands who snore really loud...those may be new ones but I'm not sure.

(Sunday night)

He ate some Perky O-s about an hour ago...yay! First solid food...good sign. Now he's passed out cold. We had him up for over an hour this afternoon. He still can't stand on his own and struggles to sit up straight and hold his head up but he's definitely getting stronger. If he wakes up again (which I'm sure he will), we'll get him up again.

In all honesty, I'm sitting here pretty pissed off right now. There's someone in the room who refuses to listen to me. I want the tv off when Jakob's's proven that sleeping with the tv on affects the quality of sleep and this person is being a real ass about it. I'm taking deep breaths and doing my best to relax...#*#**

I gotta give my little man a lot of credit. He's really doing great, better probably than I would do in the same situation. It'll be interesting to see what happens when the meds wear off...I'm not sure how big of a role they've played in his ability to deal with everything...I'm guessing significant...

I'm finally starting to feel tired. I've been running on pure adreniline for 5 days now and it's all catching up with me. I've finally hit the point where I feel everything's gonna be ok and I'm relaxing. Each little step along the healing path lightens the load...he drank water, he sat up, he peed, he spoke, his fever broke, the swelling went down, he passed gas, he went 5 hours without morphine, he slept for 3 hours straight, he pooped, he ate! Talk about appreciation...I've been appreciating a lot. A stay at Children's Hospital will wake anybody up who thinks they've got it rough.

I remember my Dad always saying to me when I was kid and I would complain about something, "there's always somebody who's got it tougher than you". I've always remembered that and I've really witnessed it these past few days. How these parents do it, I'll never know. There are some unimaginable stories here and the people who work with these kids are amazing. Don't know how they do it either. And then I look at the kids, bless their sweet, innocent hearts.

More to come...