A moment for acceptance....

Today was a day that marked a milestone...

Today was a day that I found peace...

Today was a day- finally- for acceptance...

Throughout everything since May 10, 2008, I have been told over and over how strong we are. How we are such great parents, how amazing it is that we haven't let all this with Nate bring us down.

Well, I'm here to tell you right now, that we are NOT strong. I believe sometimes it's a show. I believe that sometimes we tell people what they want to hear. I mean, really, who wants to hear a sob story? I have fallen apart many, many times. I ask God daily, "Why? Why would you think that WE could do this? Why would you WANT us to?" The anger, the sadness, the hopelessness, negativity... it has consumed me in times when I feel I should rise above.

Today, I let it all in and swallowed.

Hard.

I came to the realization that my son, my beautiful angel baby Nathan Matthew is to be loved for what he IS. I have been so focused, for so long on the NEXT step. What do we do now? Where do we go from here? What is going to happen if he can't walk, or talk, or smile, or cry... EVER? Will these siezures go away, or lighten up? What will he face, what will we face for the rest of his existence?

I vow, from this day on, to accept my son for who his is. For what he can do. Not who he was, or who I WANT him to be.

Nate had an EEG on Thursday and his neurologist upped the meds, just like we thought he would. He doubled his phenobarb, and added Topamax. He slept ALL THROUGH THE DAY yesterday. He would NOT wake up. He also had a bit of a cough and with Emi & Charlie being sick this week, we thought we oughta get him in to see a doctor. Of course with the holiday weekend, we decided not to wait until Tuesday to try to get him in.

So.... back to Children's Mercy.

And you know what? They TOTALLY remembered us! It was like Nate was famous! Everyone came around and wanted to meet the "dog" himself. Nurses from May 10 commented on how GREAT he looks. I bit my tounge. It's so hard to think that he is sooooooo much better than he was when he first got sick. But he is! Look at this little fighter.... he breathes, he eats, he drinks!

I was really more focused on the cough and making sure he wasn't aspirating. So, they did a chest x-ray and.... sho-nuf... CLEAR! But the doctor wanted to focus on the siezures. I really kind of blew it off at first, since we had just been in to see the neurologist and got the low down. Well, after three hours, we had the dr. come in and sit down and tell us that she had talked to our neurologist. She seemed very serious, and again- I about blew her concern off. But she proceded to tell me that Dr. Graf actually did the full "read" on Nate's EEG. The siezure activity that we would time were from the first "jerk" (myoclonic) to the last one. In actuality, he is pretty much having siezures almost all the time he's awake. And they are so deep in the brain that it doesn't "show" right away.

The look on the doctor's face was serious. I came to understand finally at that moment.

Nate may never be siezure free. Definitely will not be disability free. Most likely won't make the great strides he did after first getting sick.

I will do my best to be a great mommy to Nate. But in a way, I felt a great weight lifted off my shoulders by coming to terms with his "prognosis". I'm not giving up any hope (believe me), but I can stop focusing so hard on HIS future of what he may or may not be able to do. I will love him for who he is.... take pride in him being. I cannot fix this, I've known that all along, but this acceptance has been a long time coming. "Mommies fix and Daddies protect", that's what Carrie has always said in our moments of feeling sorry for ourselves and crying on the phone. Both Craig and myself need to give up control. I CAN'T fix this. Craig COULDN'T protect him from this. The freedom of knowing this is uplifting. I can finally relax. I can finally focus energy elsewhere instead of constant "fix" mode. Emi & Charlie can finally have their MOMMY back! For some reason, I don't feel like I have to be 5 different people anymore. My energy has shifted, spirit has grown, faith is stable, love is constant. I Have my son. He's HERE. He is changing the world with every prayer, with every t-shirt sale, donation. He will change lives! We will spread his spirit to others with medical needs. We WILL make his life so much more than a constant siezure. He's NATE, the DOG!

It's late, and I've been wanting to post all this, but until my fingers graced the keyboard I had no idea what to say. I read some blogs that http://www.house-of-five.blogspot.com/ has posted and sends links to. Inspiration came and out spilled my heart.

Enjoy your children for what they are and who they are today. Stop thinking about tomorrow and the next day and the next year or two. Love them for them.

Thank you all for your constant support and love!!! It's helping, in more ways than you can "see".

Love,

Carolyn

NEW FAMILY PICS...

Hey there everyone~~

Just wanted to post some pics that we had taken last Friday.  They are wonderful!  Go to http://www.amymartinonline.blogspot.com/ to see more of her work!  She's amazing!

Aren't they beautiful?  Hope you all enjoy!

-love,

Carolyn

WARNING... TEARS AHEAD!

Hey, everyone! I just wanted to say thank you to all of your well wishes for the previous post! I have had a rough week, and I know it's normal, considering the circumstances. For some reason, I have been doubting everything about myself... my abilities as a mother, a housekeeper, a wife-- even a good person in general. I've been praying a lot, a for some reason, I feel my prayers now. We always say our prayers before bed and before eating, kinda like you do routinely. But, after this week, I've been praying for myself instead of my children. I've prayed for strength. I've prayed for acceptance. I've prayed for motivation. I've prayed for the ability to make good decisions. I've prayed for my mom to send me her strength from heaven. It is really, really hard to go through all this without her. I have such a wonderful support system in my husband, family and wonderful friends, but it does feel lonely without your mother to talk to. One person, who is not my mother, has stood strong. One person has been able to "mother" me through this. This person takes on every single task with an "You got it!" attitude. This person is a rock, not only to me, but to my husband and my children. You all know her as CRAZY AUNT CARRIE, and she is a shining example of a selfless, caring, generous human being. She's only one year older than me, but I have looked up to her with such admiration. Ever since Emi was born, she has been the BEST aunt anyone could ask for. If Emi is having a hard time with her "annoying" little brother, I pick up the phone and hit speed dial for her to talk to the best person I know who had to deal with another "annoying" little brother. She always knows exactly what to say and do to make everyone feel loved and cherished. This woman has an AMAZING ability to make people feel special. With her quick wit and contagious laugh she can just brighten any room she enters. Her husband, Erin, and her beautiful boys, Kole, Jaren and Brady radiate the same energy and I wish I could see them more, just to wrap my arms around them and say "thank you for being in my life!" I can't imagine what all this that we've gone through since Mother's Day would be without her. I just wanted to put a shout out to the most important woman in my life, besides my mom... I love you, sis!

Also, to another rock. This person completes and holds our family on a pedestal. This person knows how lucky he is to have his family. He is the proudest Papa on earth, I know that. He is also my husbands BEST FRIEND and I know there's no way he would be who he is today with out him. The picture of strength. The bear hugs that come with, immediate welcoming into his family to anyone who we would call a friend. Although, (he may not think so) very intimidating at times, my father in law- Ken- is one of the smartest, strongest, funniest, coolest guys I know and he definitely deserves props for everything he has done... from dropping everything and speeding to KC when Nate went into the hospital (both times) and watching our children. No questions, he was THERE! To helping to organize the MEET NATE DAY at MAM (plug, plug). Everything in between is definitely not forgotten and I hope he NEVER thinks we expect it or take it for granted. So, who loves you? You know!

Quickly, to my husband. I can't even begin to explain how much you mean to me. I was driving home from work last night and heard that new Rascal Flatts song, "You Save Me" and the tears were a flowin'! You are my best friend and my soulmate! You are the BEST daddy anyone could ever ask for! I am so so so proud that YOU are mine! Everything you do, I know it's for us. And you are everything to ME. I love you.

Okay, so.... this week as far as Naters Potaters (as Emi calls him) goes, was pretty uneventful. Pretty much the same. He is still having siezures, although they do seem to be shorter. He started eating sweet potatoes this week. He likes them, I think. He never makes a "yuk" face unless he's being force fed the phenobarbital disgustingness. So, no emotion must be good I guess. He has been squeezing very hard on his thumbs lately. He will make a fist and curl his thumb to his palm and wrap his other four fingers down on top of it. Then he is VERY tight. So, we are working with the OT on some sort of splint maybe to help straighten out those thumbs. If he keeps up with this, they won't be "opposible" anymore!

Emi started first grade last week, loves it! She has always loved school! Her teacher told me at back to school night, that Emi is a delightful student. Yea!

Charlie will start 3 year old preschool on Sept. 3, and he's having a hard time understanding why he can't go to school like Emi. He says, " I never get to go to school!" I keep telling him how long he has til he gets to go, of course there is no comprehension of time at his age. He just whines. But, I have to say, he's probably the cutest whiner I've ever seen.

Okay, well, now that I've put you all to sleep, I must go and see who won HOH on Big Brother! Kisses!

love,

Carolyn

Sunday.....

Hey there everyone!  Today is Sunday, there's not a lot of "news" to report, but it's been a few days since I posted, so I thought I would.  We have some fun art projects planned for today to get Emi and Charlie involved in the auction at the fundraiser in Sept.  We will get going pretty soon to go get all that stuff.
Nate's on his last day of carrots, we will start sweet potatoes tomorrow. 
We've been trying to work him out everyday with stretches and some small resistance moves.  He has some strength in his legs, but for the most part his legs bend pretty easily, not putting any weight on them.  So, I'm working on trying to get him to put more weight on them, simply by holding him and bouncing him lightly on his feet.  Hopefully that little bit of exercise will help, who knows.  I gotta remember sometimes that his little brain doesn't work the same as a "healthy" brain.  His just needs more healing and time.  Also, I keep trying to remind myself of what he CAN do NOW and try not to focus on what he may or may not beable to do in the future.  Or, what he used to do.  I catch myself every once in a while being sad about not seeing him smile or talk.  I never thought I'd say this, but I'd give anything to hear him cry a REAL cry (not one involved with a siezure).  I remember clearly the last "conversation" we had and I miss that terribly.  I know that being sad about the past doesn't help moving towards the future, but I just can't help myself sometimes!  Sometimes I find myself feeling like I don't know who I am or what kind of mother I am anymore.  I am constantly going through the motions and I forget about feeling the emotions.  I want to be able to be the kind of mommy that Nate needs and Emi needs and Charlie needs.  I just am so tired of all these different hats I wear. 
I'm sorry, I know you all don't need to read about sad things, but I guess it doesn help me to right it down and share it. 
I'd better get these kiddos moving and myself as well.  Back to reality....
Love you all!
Carolyn

HBOT... PEACE OUT, FOR NOW!

We are done with the HBOT for a while! Yeah! Today was our last day! It was actually only 39 treatments, but Emi is starting first grade tomorrow and the 1:00 treatment wouldn't get us home until after school was over! So.... done, done, done. We will probably do another round in January or so.
Nate is still having 3-5 (give or take a few) siezures per day. It's still so awful to see him have them and know there is not a thing I can do at that moment to stop them. It's really heartbraking. I keep hoping that they will just go away on their own "magically". He's awake so much of the day, then at about 7:00pm he is OUT! And I mean.... OUT! We still don't know if he wakes up in the middle of the night. So, we actually are sleeping through the night, with his last feeding around 8:30 or 9:00 then his next around 6:30 or 7:00 in the morn. It seems to be just fine, I stay up usually pretty late and I always check on him before bed. Before all this mess with the meningitis ever happened, Nate was going about 9 hours at night without a feeding. So, now we have weened him back to that. It helps me stay sane. I'm so tired these days, more exhausted then ever. I don't think things are going to get any LESS busy, so I should just get used to it huh?
We have been referred to the Britain Center for early developmental work. I emailed them yesterday and am expecting a call back soon. I'm not really sure what all this would entail as far compared to what we've been doing already, but it's worth looking in to. If anyone has ever heard of it, shoot me a email about it. teamnatedog@hotmail.com.
Well, believe it or not I gotta go take care of the children! Love you all!
-Carolyn

PRAYERS FOR CONNIE

Hey guys!
Ok, a friend of mine needs some prayers, and who better to come to than you all?
This friend's mom has had cancer and she's having some pains where her tumor used to be. The doctors think that it might be growing again. She's at her limit as far as chemo and radiation, so if this is the case.... let's try not to go there! SHE NEEDS PRAYERS! All the prayers we can muster up, they're just like love-- you can always make more! Please keep this woman in your thoughts and prayers! This friend of mine also.... I know how scared she is right now, and she's gonna need some help getting through this. This woman's name is Connie, my friend's name is Cortney. So, let's get to it!!!!

Love,
Carolyn

NATE UPDATE 8/8/08

Hey Everyone!!!

How does everyone like the new site? I'm so excited about it!

So, Nate had an appt. with a new pediatrician today. I wasn't by any means unhappy with our family doc., but I just thought a actual pediatrician would be in the best interest for Nate. She's really nice, I like her alot and she had a lot a questions for us and also gave us some suggestions for further therapy. He weighs about 17 1/2 lbs., he's 27 inches long and is growing pretty well.

After his doc. appt., we headed off to his HBOT and about 20 mins in, one of the kiddos that was in there with us had a massive blowout. At first it was just the smell, then.... it was the toxicity. My throat started to burn..... thank the lord that they decided to end the treatment and get him out. It wasn't a "full" treatment but it does count as a treatment. Nate only has 4 left! It will be really nice to be done with it for a while.

Nate had his first taste of carrots today! I was very Martha Stewart and actually made his baby food. I steamed the carrots for a while then blended them up. He seemed to really like it! These stages of growing up has always been so neat! I'm so proud of this little guy for being able to eat real food! He's still surprising us to this day!

Well, hope you all are well and we are still so appreciative of all your support! Love to all!

Carolyn

NATE UPDATE

Hey everyone,


Just wanted to let you all know how Nate is doing and a couple other things.

First, I am 100% positive Nate's vision is improving. We don't want to jump the gun but on more than one occasion I have snuck up on Nate so he doesn't see or hear or feel anything, and dangled a toy (a gold pompom) in front of him. He gradually shifts his eyes towards it and tries to reach for it. He actually got a hold of it once.

Carolyn cut his hair yesterday and I gotta say he looks like a hansome chubby little man. He is still eating like a champ and packing on some poundage.

We are closing in on the end of oxygen therapy treatments for this round. It will be a welcome break and achievement to get 40 "dives" under his belt. He should finish up the day Emi goes back to school- the 13th.

Nathan's seizures are still occuring 3-5 times a day usually lasting 3 or 4 minutes. The neurologist doesn't want to change his dosage unless the seizures progress into 5 minutes or longer or if they start to stack up one after another. They do not believe it is causing any damage at this point. It almost always happens when he wakes up, like his brain is re-booting.

We donated to the Caring Bridge website in honor of Nate. We feel that without it communicating with so many people would have been impossible and hopefully others can benefit from this site as well.

We have negotiated a group dicount rate for a hotel in Omaha the weekend of the fundraiser. https://www.hotelplanner.com/Accept/Deposit.cfm?pid=236379&SSLSite=GROUPS.HOTEL-GUIDES.US&CFID=6228801&CFTOKEN=846e314be2098d3e-6F4B698C-15C5-60E5-442FBEBD2C9050A7 If you go to this link click on the "add to rooming list" or you can contact Kathy Song at (402)397-3700 ext.2207. Team Nate Dog is the name of our group. The hotel is in Omaha near most attractions and it has a pool. It is also pretty close to the track where the fundraiser will be. The cut off date to book a room at the discount price is 9/13.

Can't wait to see you all there. So many people have donated items for the auction and put so much effort into making this day incredible. Thank You!!!

We will keep everyone up to date.

Love ,

Craig