ANYWAY, today's blog inspiration comes from a picture that came on my desktop. I have it where pictures from the past several years "float" across my computer. The one that was here today is this one!And, without a doubt, I knew it was time to write about this little "Woody" guy in the photo with the mouse ears on. (sorry, Buzz Lightyear, not blogging on you today. LOL).
Here I am going to tell the story, PART ONE, of Carter. If you know all about the story, you might read again. Maybe there's a few details you didn't know. If you don't know the story, don't let it end at the bottom of the page. Because I will finish this in PART TWO, tomorrow!
Most know the journey our little Terry (Carter) Cullen has been on for the past 2 years. Briefly if you don't know.....Only 5 days into their move to Atlanta, Katie , our youngest child, was fixing breakfast for Carter and, at the time, baby Ella Kate. She asked Carter what he wanted and no response. She said she didn't hear ANYTHING so she became concerned. When she walked into the playroom, he was lying on the floor. OUT. Like, she thought he had no heartbeat, out. I don't even like to think about what was going on in her head, but it didn't take long b/c she was calling screaming on the phone "Carter is unresponsive mom!!!!!!!!! I just called 911!"! well, the next days/weeks/months became one of a mystery to be solved but it was concluded that he had Epilepsy. And the way she found it was from a "grand mal seizure". It was shocking and sad and a journey we didn't know one thing about. Nor did we relish the thought of what that meant for Carter. And all Katie/Jon did, it seem, was talk from doctor to doctor and read and study about something they wished they didn't have to. ....
At first, it seemed like he was OK. we were hoping/praying it was a "one time thing"--that grand mal seizure. But, around this very time last year, they began to increase, these seizures. Not big, long lasting ones. But (we didn't know what they were called then, but now know they are"Drop seizures"). Like he would be walking and fall. And not remember it. He would stare off into space for sometimes up to a minute (try counting to 60 , it's longer than you think) and then he would "come back". Wanting only Katie. "hold me, mommy". Exhausted by it. (we found that having a small seizure like that is , for one his age, like running a marathon!). Then, after about 30 minutes he would be ok and play. Only to "fall out" again. And again. More frequently.......(If only BUZZ had known what little Carter had been through in that picture)......
After we returned from a great trip to WDW, (celebrating Ella Kate's 2nd b'day, so you know it was exactly one year ago!), the seizures stepped up again, as I mentioned. (He had a few in WDW, one on the monorail, but nobody noticed b/c it just looked as if he got tired and fell into his tray of his stroller for a moment). Back home in Atlanta in the mornings, he would be eating and BAM!!!!!!!! his head hit the table. Busting his lip. Over and over this would happen. Bruised eyebrows. Cut lips. Knots on his sweet little head....He would be walking and playing and BAM!!!!! he would fall and hit his head. we were freaking out over how often they were now coming. And new MRI's and Cat Scans were ordered. "DROP SEIZURES"--seizures that popped up all in his brain which makes it harder to treat. That was discouraging news to say the least.
And then.....Katie announces to ME, on April FOOLS day, no less "I'm pregnant". ...."hahahah! not funny, Katie. That joke is so old everybody does it. " But, guess what? It was TRUE! In the middle of their crisis, they find out baby #3 is coming in November. We were ALL shocked. But, of course, "baby freaks" that we are, were excited. But, being a mom of five, I know each additional child makes things so much for the better but , honestly, and in their case, much more complicated. And things with Carter were getting MUCH MORE complicated.....
Fast forward a few months. Katie's great pediatrician in Atlanta suggested what another of his patients had done. To go to this great hospital in Ohio---Cincinnati to be exact because they have a children's hospital there that specializes in seizures!YES! We had SOMETHING to give us hope!
So, it was off to:
http://www.cincinnatichildrens.org/service/c/epilepsy/default/
To raise money for their trip there, (it took a mini second for them to decide to go!), Katie came up with a great idea to sell tee-shirts with Carter's own logo on the front. It was a great idea and she sold SOOOO many!!!!!!! We decided to use "Carter artwork". Using his own little hands and feet to make the shirt cover. He was excited b/c we told him "No MORE STINKY SEIZURES" (which became his mantra!)
So, off to Cincinnati they went , (with extra money in PayPal thanks to sales of the shirt) with Jon's mother as another pair of ears. We kept EK. The trip there, they said, was ROUGH. (Carter got so tired that even now he says "NO MORE INTERSTATES, DADDY!")! Long trip but well worth it. They were amazed at the hospital. Katie was constantly texting me what was going on and sending pictures of the hospital, etc. The doctor took about 10 seconds to confirm that Carter had "generalized seizures" which can occur throughout his brain. That his brain looked completely NORMAL (praise the Lord, we knew that but it helped to get that confirmation) and no worries about Autism or anything like that! (he is MUCH too social for that, lol!). The only thing he noticed was his speech was behind where it should be. Not surprising, poor Katie had to take him out of his beloved playschool in Atlanta b/c they called , every day, that he had 1. fallen out of his chair 2. fallen on the playground 3. hit his head on table. It was beyond upsetting and frustrating b/c he LOVED his playschool and the teachers there were sooo supportive and helpful and were so sad when Katie had to finally take him out. (*his speech is SO much better, although he still will probably need some speech therapy once they get back to B'ham. Yes, you read that right! They are going to move HOME!!!!!! PTL!)...Other news they heard:Probably won't outgrow the seizures. (ugh). Can't swim. Needs helmet. All that info was depressing. But one tiny bit of hope :"often can be helped by DIET...........".
SO, thus ends my PART 1 of how God orchestrated our past year with Carter. NO, God didn't zap Carter with Epilepsy. NO, Carter won't outgrow them but YES, God put Katie/Jon in the exact place (yes, even Atlanta!), where they needed to find out everything there is to know about Epilepsy and Carter's care. As did Cincinnati.
And, YES, God has walked every step of this journey with Katie, Jon and Carter!!! HOLDING them when they were crying. COMFORTING them when it seemed it couldn't get worse. LOVING them through friends and strangers. Giving them STRENGTH (being pregnant, it was even harder) to make the journey. And giving them HOPE (the best part!) this past year....
So, that's all for today, folks. PART TWO of this miraculous story continues.......TOMORROW!
So, while this blog spot talks about Carter, it is also interwoven with SO much more. It's a GOD/CARTER story, for sure. If you need some hope, tomorrow's blog is for you. If you need assurance there is a God, THE GREAT I AM, that heals and gives hope, you will be touched and, well, honestly, AMAZED. Come back. Just like on the Saturday before Easter, when the disciples were in the Upper Room, sobbing for their Lord, they didn't know what the next day would bring. Joy Untold. So with the Cullens..... stay tuned.
#journeythroLent #miraculousworks #longjourneyssometimes #despaircanbecomehope #carrythatcrosshigh
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