Friday, December 25, 2009

Two moms


I follow my eager five year old to the entrance of the unfamiliar building, "in here mama" he says. A flurry of activity is all around. Young fathers, toddlers all bundled up in winter gear and five and six year old boys sweaty and cold at the same time. "Daddy always goes to number 4 mommy", we push open the heavy metal door and find a section of the bench that isn't wet or blocked off by a little ones duffel bag.

"Okay Owen, where do we begin?" I ask, completely overwhelmed. "This first mommy, then my knee pads." Ok, got it. I struggle for the next ten minutes to properly equip my son for his favorite activity. "Whew, we did it bud!" I cheer. "let's go mama", he commands as we walk thru the crowd of other young termites.

I've suddenly become a hockey mom, I thought to myself. I wasn't prepared. Owen gets on to the ice and listens intently to his coach. I'm greatly impressed by his ability. Those skating lessons have paid off. He's smiling, I'm smiling. Then I feel a tinge and the tears start to well up in my eyes.

I'm not used to this feeling anymore. The feeling of being so proud of your son you could shout it to everyone in the rink. My unfamiliar feelings make me feel as if I'm a spy in "Normal Town". For a while now Joe has brought Owen to his activities and I have brought Dermot to his "activities".

I'm used to explaining why Dermot can't hold his head up as well because he didn't sleep, or that he doesn't sit up as well anymore because he's so drugged up. But this feeling of watching my oldest son skate so well and score a few goals, I haven't allowed myself for a while.

How do I mesh these two realities into one? How do I go from slipping on Dermot's AFO ankle supports to making sure Owen's skates are on tight? Don't even get me started on the fact that Ryan is learning a new word everyday and I can see him become a little boy right before my eyes.

Who am I? I'm a special needs mama, full of pain, strength and grief, I'm a hockey mom full of pride, joy and gratitude, I guess that means, I'm a mother.

Monday, November 16, 2009

Epilepsy Awareness Month

November is Epilepsy Awareness Month. I'd like to post this link to the 60 minutes profile that aired within the last month. I found it useful to watch. I also thought it was my responsibility to do my part to inform the masses.

Enjoy!

Sunday, November 15, 2009

Thank you TEFRA

Thanks to TEFRA and the CADI Waiver, here's the benefits...

Van modification:



With the push of a button the seat pivots and lowers down to the same level as Dermot's stroller, saves my back a ton of wear and tear.

Home modifications:



Instead of ramps in the garage, that require a foot of length for every inch, we opted for short steps to get Dermot's chair in and out of the house, works great!




Bath lift

This one was a bit hard to stomach. It meant that I was relying on a machine to lift my son in and out of the tub. That's my job, right? Well I tried it for the second time tonight and it works just fine. Dermot was able to float and kick around for the first time in months. We've had to give him showers in his bath chair for a while now. Little boys need baths. Dermot can have them again, hooray!




Feeding chair

A few months ago Dermot was still eating his meals in an old Fisher Price high chair, he wasn't supported enough and he was way too tall for it. This chair allows Dermot to eat, play and move about the main level of the house with ease. The chair raises and lowers down to the floor, tilts and reclines and it has a tray for toys. This is by far my favorite benefit from TEFRA. Makes everyday life at home so much easier.





Last thing we've ordered and are still waiting for is the changing table. It's similar to one you might find in a pediatrican's office, but has a fancy jungle theme painted on it to match Dermot's room. Benefits are obvious, saves the back from bending down too low.

We will be set for a few years now. I fought off all of this equipment coming into my home for a long time because it meant yet another step away from normalcy. I had to get used to the idea. I have. I'm grateful for how much easier this makes my job as Dermot's mom. Please let me know if you have questions about the program or any of the equipment.

Friday, November 6, 2009

Before and after


"i can't imagine having a child with disabilites"

I get that a lot. So do my other special needs mamas. The truth is I can't imagine it either. Never in my lifetime had I even thought that it would be a possibilty.

If you've ever read the poem "Road Map To Holland" ( google it ), it describes the reality of having a child with disabilites like going to a country other than the one you planned on. I personally hate that poem. I think the author wrote it to make the people who don't have kids with disabilties feel better, comforted. Believe me, it's not at all like going to Holland instead of Italy. I've been to both of those places. They are not that different. Just the language and the food.

My worries before special needs:

Owen only slept for ten hours last night
Owen has a runny nose
Owen started throwing toys at other kids
This stroller doesn't fit in the back of my Mercedes Benz
Don't give him peanut butter before age three!
I hope I'm able to finish the book before book club meets
I wish my husband would come home so I can go to yoga
I have to remember to invite Debby and Sara over for the movie on Friday
What if Owen drops his nap before he's three?
Should I potty train at 2-1/2?
Should I let Owen wear a diaper or a pull-up to bed?
Is it okay to let Owen watch more than an hour of TV a day?
Am I ever going to wear this black bikini again or should I stick with the brown one?

My worries after special needs:

Is Dermot going to die?
Am I going to die before Dermot?
Is it okay to give Dermot five medications at a time?
This stroller doesn't support Dermot's head.
Will people treat me differently because my son is different?
Can I make it for three months without my nanny?
Am I going to have a nervous breakdown before age forty?
Do I have any friends that understand me?
Why aren't my old friends calling me as much?
Should Ryan be watching so much TV while I feed and care for Dermot?
How on earth can I bring all three kids to the park by myself?
When will I get a shower?
Should I be counting Dermot's seizures everyday?
Is the Depakote working?
I hope they can find a vein when Dermot gets his blood draw next Monday.
What will I do when Dermot is too big for me to carry?
What will I do when Dermot is too big for me to hold?
Will Dermot's brothers help him or resent him when they're older?
...

Sunday, October 4, 2009

Dilemma

It's 3:14 p.m., I'm walking feverishly down Edina Blvd. with Dermot and Ryan stuffed into the double jogger, the beagles leashes wrapped around my last two fingers of my left hand. I've got 12 minutes to get to the bus stop to pick up my 5 year old from the temporary bus stop.

My phone rings loudly from the stroller's storage pocket, I check the caller ID, MN Epilepsy Group....I answer it quickly. As I answer one of the beagles decides to poop. "hi Sue it's Vicki from Dr. Ritter's office. We have the results of Dermot's EEG last week." "that's great" I say. I've been waiting eight days to find out what kind of seizures Dermot is now having. You see, this past summer he was seizure free for about 2-1/2 months. It was glorious, to say the least. Then, as it has happened before, the seizures started to come back. The first few days he'd have just one or two, the week after that we were up to around ten and now, unfortunately we're in full swing again. On average he has about forty seizures a day. Some, when they occur, look like he's been struck by lightning. Others are a blank motionless stare for over thirty seconds. These ones are new. Dermot's brain has a curious way of evolving and defying the seizure medications that are present in his body. To date, he's had seven different kinds of seizures affect him and just as many medications.

"is this a good time to talk?" Vicki asks. It isn't a good time to talk, but realistically, the only good time to talk on the phone with me is after 8 p.m. when all the boys are asleep, but by that time, Vicki is at home enjoying her ordinary life and I'm completely wiped out from the day's events. "Sure?" I answer.

She begins with a detailed description and overview of what the EEG has shown about Dermot's seizure activity, I think I heard and understood about 65% of that, then she begins to describe FOUR different medications that Dr. Ritter would possibly suggest for Dermot's type of seizures. Just then the other beagle decides to take a dump on my neighbor's lawn. 3 minutes until the bus arrives....

As she is describing the some of the possible side effects of the medications, Owen gets off the bus. "how was your day honey?" LIVER FAILURE "Did you eat all of your lunch?" SLEEP LOSS "Who did you sit next to at lunch?" NAUSEA, VOMITING, HAIR LOSS.

She finishes talking and says "let me know what you decide about the medications". I hang up, start walking home and continue to talk to Owen about his day, hoping that I'll remember enough about my previous conversation to make an educated decision about what medication to experiment with next.

That was three weeks ago, I have yet to decide what to do. In that time it has occurred to me on more than one occasion that I should not be the one making this decision, the doctor should. I'm stuck. Dermot's behavior, appetite and sleeping patterns are all very predictable. Do I stay with what I know and live with 40 seizures a day or do I try something that will change his whole system and may or may not help his seizures? That is my dilemma...

Thursday, September 10, 2009

First day of school



So Dermot started his first day of ECSE preschool today. Monday thru Thursday mornings he'll be there. Weird. His first day went great, he's got four other little boys with varying degrees of abilities in his class. He thrives on all of the activity and loves his teacher.

Tuesday, August 4, 2009

Big Boy Bed!





Grandpa Kessler made a custom bed just for Dermot! It's almost like big brother Owen's. But this one is higher, to save my back and it includes a removable railing for safety. I'm very grateful I have an accomplished carpenter for a father. Check out his website Franz GT Kessler Designs .


Dermot loves it, I swear he's sleeping better too!

Wednesday, July 29, 2009

The lost one

There's a faint thud and then a loud cry from behind where I'm standing. Owen had lodged himself between the bathtub and the toilet, he slipped and out came the blood from right below his right eyebrow, his pure baby face was no longer pure. At ten months I thought to myself, it was to early for him so have a scar! As I began to chastise myself for being a bad mom, her car pulled up. I was running late and she and her son were already here. I ran out to the driveway to meet her, showed her what happened and started to cry. She tenderly reassured me that I was in fact not a bad mom and that he just needed a bandage. Okay, I can do that. She held Owen as I applied the virgin bandage to his eyebrow, and we were on our way. It was a Friday, we were on our way to "Movies for Moms" at the downtown theatre. It was a big deal for us when the boys were babies. We had an activity for the day, plus we could see a "grown-up" movie without the expense of a sitter. I looked forward to Fridays.

I met her at an ECFE class with my first son Owen. She was new in town and like myself, the mother of a six month old baby boy. We quickly became friends. Both trying to keep our days filled up so the common doldrums of first time motherhood wouldn't seem so lonely. We signed our boys up for a plethora of classes together, we had a standing play date every Friday, we started our own book club, we vacationed together, we talked nearly every day. We even managed to get pregnant with our second within two weeks of each other.

It was summer time, my due date was July 26th, hers, August 5th. We commiserated about how the intense hot summer days were taking a toll on our already overheated bodies, we spent nearly everyday at the pool, enjoying the weightlessness of the water while our firstborns went down the giant whale slide over and over...then July 22 came and so did my second child, Dermot Thomas Sullivan. Another boy, she mentioned how she hoped she'd have a boy so they could all play together, I secretly wished it too. A few weeks later, after a long drawn out labor, her daughter was born. Congratulations to us all.

We enjoyed our kids and our friendship. I thought how comforting it was to have a good friend and I could call often and know she'd be up for getting together or helping each other out if we needed it.

Then, I found out that Dermot wasn't going to be like everyone else. I remember driving home from the hospital, numb, I called my friend to tell her what I had just heard, she was the first non-family member I called. What was there to say, not much. I didn't want to hear much, she offered to hang out and help me forget, I appreciated that.

As I said, I was numb, that lasted a good three or four months, then came the flood gates. I tried desperately to hang on to my old self, participated in all of Owen's activities, brought Dermot along. He was, to all who did not know, "normal" looking. But I knew. I remember very clearly at Owen's Tumbling class, bringing Dermot is his stroller, lined up against the wall with her daughter and a few other little ones. I kept glancing over, noticing the how her daughter was grasping a rattle and shaking it with a enormous smile on her face, then looking over at Dermot and noticing his blank stare. I was officially unglued. I remember needing so badly some comfort as I tried to get through the class without the tears getting noticed. I packed up the boys in the car and started it up. Then the tears came, I couldn't hold them back any longer. Owen was in the back seat asking "mommy, why are you crying?" I couldn't stop. My friend stopped me in the parking lot and ran out of her car , she hugged me tightly. All I could say was "too many babies." I left feeling more alone and more different than I can remember.

Those next few months I was raw with grief. I was navigating my way through the land of special needs, meeting new therapists for Dermot, and myself. Meeting new doctors and firing the old ones. Shell shocked.

All the while, my friend would call almost everyday and want to get together. Although normally I'd want to, more and more often I would find reasons not to. You see, her daughter was reaching and exceeding all of her milestones. I wanted to be happy for her, but my heartache was too fresh, too raw. I wasn't capable of giving her anything. In fact I pushed her away. I knew I was doing it.

Why couldn't I tell her that seeing her daughter was too hard, that I felt like a crazy person when Owen ran off with her boy at the park one day, that it took all that I had to make it through the day without having a nervous breakdown? Because I didn't know either. I was trying to use my coping skills from my old life in my new life and they were not working.

It's been over a year since I've talked to my friend, I miss her every day. I'm angry at her for not sticking around, I'm angry at myself for not letting her. I know there are two sides to every story and then, the truth. This is my version.

Sunday, July 5, 2009

Worst Case Scenario

"Doctor, what's the worst case scenario for Dermot?" Joe asked as we were sitting in the epilepsy ward, January 2007. "worst case, your son will be wheelchair bound for the rest of his life", said the doctor.

I've been filling out a lot of paper work lately for Dermot. We've started with a new physical therapist and I'm attempting to apply for TEFRA thru the county. It's a supplemental healthcare that we'd pay a premium based on our income, then we'd receive the benefits that kids on Medical Assistance receive. It pays for things like home modifications, van modifications, durable medical equipment, and ton of other things.

The problem is that every form I fill out, every piece of equipment we purchase takes us another step away from normalcy. I'm usually okay with that, but today I'm sad about it. I've seen a lot of three year old's today. A typical three year old talks in complete sentences. A typical three year old is almost potty trained. A typical three year old wrestles with his older brother, splashes around in the pool, starts preschool, gets a big boy bed, feeds himself a messy cupcake, charms the pants off our dinner guests and runs into the counter and bonks his head, then gets up and says: I'm ok.

My three year old does not do any of those things. People will tell me to focus on the positive things, to appreciate the things he can do and be grateful for what God has given you and your family. Not today, today I am sad about it. I want so badly for Dermot to wake up tomorrow and say "good morning mama" and walk in to the kitchen and demand Honey Nut Cheerios for breakfast. I want Dermot to have friends and playdates and activities other than therapies and doctors appointments.

I'm the mom I thought I might be. The one that drives the van with the lift, parks in the handicapped parking stall and drops her kid off at school while the other mothers watch politely. I'm usually okay with it. The acceptance part of this is getting easier. But for some reason today I'm sad about it. Maybe it's because Dermot's birthday is coming up, that's probably it.

Saturday, May 30, 2009

Random thoughts from Target

insurance companies....Topamax...where did I park? where's the $ coming from? smile and try to remember that woman's name...I hate Jon and Kate plus 8...my arm is getting tired from holding this basket I should have gotten a cart, but then I would have spent too much money, I curse you Target!!!! check the visa bill...we haven't sold the casco house yet...my stomach hurts...I'm doubting my program because of my codependency...write this down before I forget...when does the childcare end? why is Dermot still sick? why does his body jerk and tremble when he has a fever? what is the Topamax doing to him? why is there not just one doctor instead of six in charge of Dermot's health? Is Dermot going to die before me? I'm calling the insurance company now.

Sunday, May 10, 2009

Crisis averted

I'm writing on a piece of paper in a plane on my way home from a weekend away in Chicago with my mom. Last night I was awoken by Joe calling at 4 a.m.

Dermot had been having seizures every thirty seconds for the last half hour.

I'm always amazed how I function in a crisis. No time to freak out. I know that the maximum time the doctor wants a seizure episode to last is 10 minutes, then we're supposed to take action.

Joe was alone with the three kids. Two of them sleeping, as typical kids do at four o'clock in the morning, the other's brain, short circuiting every half minute.

One: what's going on?!?
Two: Focus Joe
Three: time to administer the Diastat (rectal Valium), this step was hard. You see the whole time Dermot has had his disorder, we've never had to use this emergency medication. It's about two tablespoons of creamy medication packaged in a syringe that is inserted into Dermot's rectum.
Four: call aunt Katy on the other phone, get her over to the house so Joe is not alone.
Five: call neurologist on call.
Six: wait for doctor to call back...
Seven: answer call from doctor, turns out we did everything right. Dermot stopped seizing, started crying and started to relax and feel the effects of Valium. Katy arrives, Joe is not alone anymore. Dermot will fall asleep shortly.

Crisis is over. It takes me two hours to get back to sleep at my hotel room.

We've made many changes since I last posted. Dermot has been off the ketogenic diet for over three weeks, we added a new drug (Felbatol) to Dermot's regimen, after four completely sleepless nights we deleted that drug and added Topamax. For about two weeks, Dermot's observed seizures went down from 40-50 per day to 5-10 daily. A HUGE improvement, we even had one day when he only had four seizures. Amazing, right?

There's a virus traveling thru the family, it's Dermot's turn. After Dermot calmed down, Joe took his temperature, 101. My theory is that the fever caused his breakthrough seizures, let's hope so.

Eight: Prepare for the future as much as we can and let God chart the course on our journey with Dermot. Pray for him.

Peace out.

Wednesday, April 1, 2009

Swing


So there's this other blog from a mom I read. She's got a daughter with a seizure disorder, she's wonderful about keeping you updated in the nuks and crannys of their lives and updates her blog frequently. I seem to be avoiding this blog.

I have an excuse I suppose. We moved two weeks ago, five blocks away from where we were before. It seems like that should have made it easier, not so. Managing the three kids and the mayhem was a nearly impossible task. Moving day included two trips to the emergency vet for our youngest beagle, who decided to see if she could eat an entire bag of cat food, she only got through two pounds of a four pound bag, yuk. A VERY cranky, teething 10 month old also added to the mix, hurray! The saving grace was Owen was having a blast ALL-DAY at the Sayles household, what a great day for him!

Two days before the big move was Dermot's quarterly neurologist appointment. At this appointment we discovered that Dermot had officially gained ten pounds in six months, which made me fuming mad. You see, I had been continually calling the dietician who was supposed to be managing Dermot's caloric intake. Each week I would call and inform her that Dermot gained another pound, not enough was done to control his calories. He was given the calculated amount for a typical two year old. Ridiculous.
So we are now in the process of tapering off the diet and trying another drug. Felbatol to be exact. With this drug comes side effects and bi-weekly blood draws to check for elavated levels of something that may cause kidney failure at the very worst and sleeplessness at the very least. That's not great.

I'm also on a mission this spring to get an appropriate adaptive swing for Dermot at Wooddale Park. I think it's going to be a process. I have already been shot down once, the city states the current swing is ADA compliant. That doesn't mean a lot to me if Dermot can't sit in it comfortably and swing with his brothers. I'll keep you posted on my swing crusade.

I'm going to go to bed now.

Friday, March 6, 2009

Letter to Dermot


"Letter to Dermot"


Dermot,

I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep.


God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy getting into trouble and running around. It hurts. You are so beautiful and special in ways I would have never imagined. I wonder if I will ever be able to overcome the heartbreak. I don’t know. I hope so. I wish sometimes I could just hold you forever and make everything ok, I know that won’t happen. Sometimes I don’t know what to do with my feelings about you, I feel distant and frustrated. Please know that those feelings are all about me. I don’t want them to affect the way I feel about you. I want the best for you and I will give you the best I can as your mother. I hope that you can grow with me while we figure out what your life is going to be like. I want to be your advocate, although I’m afraid sometimes that I’m going to make the wrong decisions regarding your well-being.

I promise to follow my instincts and be true to you. I promise to protect you at all costs and be there for you always.

I'm glad to know that we are surrounding you with people who love you and will take care of you. Your brothers will be your friends always and will be there for you when I cannot. I will teach them how to love and care for you with great compassion and understanding, or maybe I should say, you will teach them, as you are teaching me and your dad.

I resist new things for you sometimes because I don’t want to see you in pain. I get angry when you are sick because you have been through far too much in your life than someone should have to go through in their entire life. I was angry at God for a really long time about what happened to you. I know now that that wasn’t helping anyone. I need to see the real picture. I need to let God help us, help me. I can no longer live with the illusion that I can control the outcome of your life. I can love you with everything I am, I can care for you and try to make the best decisions for you that I can, and I can be with you every step of the way.

I keep thinking that if I get this thing or that thing for your life will be better, who knows. I’m working really hard to change my image of what my life should be like and what my kids and family should be like. My expectations should stretch and grow with every experience and never get stuck with one idea or one picture in my head.

I love you my sweet Dermot...

Thursday, February 5, 2009

Enough?


Am I doing enough? I ask that question to myself on a daily basis. You see I have help with the kids now. It makes a tremendous difference in our family's lives. I am no longer completely wiped out at the end of the day and I no longer dread the next day. I cross things off my "to-do" list every day and boy is that satisfying. I make dinner almost every night for the family and I get to take a shower every day! If your a mom you'll completely understand that one. But there's a nagging feeling I've had for the last month or so. Am I doing enough?

Joe is in the second month of Dermot's Hyperbaric Oxygen treatment, that means he takes Dermot out of the house from noon to 3 p.m. everyday. It's weird, not hearing his singing or having to wonder when he's going to wake up from his nap.

Is the therapy working? Do we notice any differences? Not really. If anything, I've noticed his seizure activity has increased and he seems more out of it. I can't really explain the feeling I get when I think about Dermot except to say there's a silent panic in me. If I stop to listen it gets painful. So most times I keep my mind running. I glob on to things I can control, things that give me comfort. Chocolate chip cookies, running, friends and my other little boys(I know I can't control them). A strange mix hmm?

I have friends that try every new treatment, see multiple specialists and surf the internet looking for possibilites. I watch them I worry that I'm not like them. I don't have the energy or desire, I'm not sure what it is. But it comes down to the same question, am I doing enough?

We're still waiting for some tests to return from Mayo. We had them done in mid-December and we still do not have any results back. They were doing a microscan of Dermot's chromosones to check for deletions or abnormalities and a test for a male form of Rett's syndrome. Those results are in the back of my head all the time.

I know I love my family and ALL my boys with great intensity, I'm grateful for my friends, my husband, who does more for me than he'll ever know and my crazy life.

But am I doing enough?

Thursday, January 22, 2009

And Ryan too!



Ryan and I are taking swimming lessons together and he's having a blast! Puts his face in the water himself and splashes like crazy. He also got his very first ear infection, and he made it a double! He's recovering from it, let's hope the sleeping habits will improve. Joe and I are walking zombies from being up with him all night!

Babies are great, right?

Kindergarten here he comes!



So Owen and I just went to visit his new school for next fall. I can't believe they make you register so early! He loved his classroom, he's excited to ride the bus and eat lunch at school! He's growing up so fast. What a blessing he is.

Dermot's school



Dermot's third day of school is tomorrow. He goes to a new transition class every Friday morning until the end of the school year. I think when they say transition, it's a transition for the parents. It was very strange to drop him off for the first time and just leave. I was worried about if he started to cry, or get upset. Would the teachers know how to calm him down? Would they hold him like I do? It's one of those moments when I have to Let go and Let God...

He's doing really well. There's at least one adult per child, he gets a morning stretch, a workout, book time and a song of the day. What more could you ask for?

Thursday, January 8, 2009

Breathe in Breathe out...



Dermot started his hyperbaric oxygen therapy this past Monday. He'll go Monday thru Friday for the next eight weeks. We're not hoping for a miracle, but we are wishing for more alertness and better cognitive ability. We'll see.

See link for more information: www.lifeforcetherapiesusa.com

I'll keep you posted on his progress.