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
Oh Carolyn,
ReplyDeleteyou have spread your wings, you ARE flying, Nate showed you, the support of your family and friends showed you, you have been taught and now you can teach the rest of us. May you soar fearless and strong for the days to come. May you be able to see the love and strength that YOU give to everyone around you. May your tears be consumed by laughter, may your children be taught to do the same. You are so right about everything, we have been given a beautiful gift. I promise to do my best to see things the way you do and to just live. Like you said, the things that we DO have, we have the BEST of. You keep flyin sister, you are not alone. I love you and I am proud to call you my sister. XOXOXOXO AC
Craig, Carolyn, Nate, Charlie & Emmi,
ReplyDeleteI know I don't know you guys very well, but I want you guys to know I think about you and pray for you everyday.
You say you aren't stong, I think you may be the stongest people I know. It takes special people to go through what you guys have these past few months.
I know you have confusion about why GOD is letting this happen to you, but only he knows why. He knows you are stong enough to handle it or he wouldn't have let it happen to you. Keep him by your side and he will help you through it all.
My heart does ache for you guys and I will continue to pray for your family.
I hope that someday soon I can meet "The Dog" and kiss his precious little head.
In my eyes you both seem like excellent parents, and Nate, Emmi and Charlie are very lucky to have you.
Keep it up and stay strong.
Please don't hesitate to ask if you need ANYTHING at all.
Love
Stephanie Kotchavar
Well you know, if one can face what is front of them, and feel what is near, then one would surley have to absorb all the consatnt energy that flows through the earth.
ReplyDeleteIs it not then that you would surley see the power of your strentgh? Because from where I sit I think to feel what you feel-and I mean all of it, you certainly must be strong. To fall to ones knees and sob, question and be filled with anger and yet still get up and need to do and be more- is strength.
I know given the option you would have much rather not been chosen to be strong-it is SO much easier to not face reality, to look away to go out of your way to not feel-but for whatever reasons you and your wonderful husband have become true, right and just.
There are many people who can claim this honor, but only few that really get it. By saying you are not all that, says you are ALL that and more!
No pressure here, no need to be on top of your game all the time, but one thing is necessary and that is your love, your faith and your willingness to share...other than that you can think what you want of yourself, but for the rest of us we KNOW you are way groovey cool man!