A Time to Relax.

Then there was a friend, Wendy. Yet another person put in our lives to help Drake. She is a GSO firefighter, but more importantly, she is a message therapist. She hasn't worked often with children, but surprisingly enough she has done a few special needs kids. She never judged or felt insecure with Drake, she just had a way about her. She quickly figured out he liked to swing and that being held close was a comfort. With most people, he just cried no matter what we did. With Wendy, he found peace with her, he seemed to let go even if it was only for 15 minutes at a time. I tried not to watch everything she did, I felt he needed that break from me too. I would peek in from time to time just to watch her put her hand on his heart and listen. I almost felt guilty for watching such an intimate moment, but it was amazing to see him give in to her. We would joke later when I called it the "Jesus" position. He stayed so curled up and closed to the world. But, when Wendy started working both legs would stretch out, arms layed out flat, head turned to the side with eyes closed and he finally relaxed. It was a beautiful thing to watch, I even got a little jealous at times and asked how do you do that? She said I don't take it personally and I guess he could sense that! Since I knew I couldn't take the personal aspect out, I let her do her thing every other week and enjoyed the fact that Wendy was another blessing given to us through Drake.

YUCK

So shortly after meeting The G.I. doctor, DR.Hill, his first question was what are you doing here? Of course, he wasn't crying for the 45 minutes we were their, isn't that always the way? He seemed short and in a hurry, wasn't at all what I expected in a doctor. He changed a medicine he was on for reflux thinking this could be causing headaches. Seemed like a simple fix, I hurried to the pharmacy to get the pill which would help Drake stop crying.

Guess what, it wasn't the reflux medicine. So I hesitantly called the Dr. back only to find he was actually concerned and scheduled a 24 hour probe. Yes our first overnight stay at the hospital. I was secretly thinking, good, finally someone in the medical field can see first hand how much he cried.They put a horrible tube down his nose and strapped him head to toe on a aboard to get x-rays as he screamed in terror! I can't imagine not being able to hear or see well, what he endured that morning had to have been a cruel world to him.

We did get through the night and the results said he was refluxing something like 72 times a day. YUCK, I'd cry too. His meds were doubled and yes, It did seem to help. Didn't stop the constant crying, but it did help!

Priceless !

At this point Drake is 4 months old. Who puts their baby in school at this age? Wasn't I a stay at home mom? Didn't I give up a career as one of "Greensboro's Finest" to be with my children? All these thoughts ran through my head as we entered the school in January.

I made a plan for us, the four of us(T,S,G & D) would take Drake to school. I thought if I had Daddy and Grant to take my mind off dropping Drake at GSO CP, that it would be exciting. WRONG!!! I know you'll never guess this, but I cried, no actually I sobbed as we were leaving. I wasn't suppose to do this till kindergarten, the whole thing actually caught me off guard. I knew this was the place for Drake and our family, but dropping your baby to others, was a step I wasn't prepared for. I now know what it's like for parents leaving their children in daycare while they go back to work for the first time. And yes, I did leave crying that day, but once again, time healed that wound and quickly.

We started Drake at 3 days a week, that was my agreement and there weren't rules saying different at the time. I think by the end of the month I started 4 days and actually enjoyed dropping him off! I saw how he reacted to his environment for the first time, that he knew he was somewhere besides floating in space!!! I could tell he knew when we got there, don't ask how, I just knew.

I tried for several months to come up with ways of letting him know where we were going in the mornings. I forgot to mention, he cried for the 45 minute commute EVERY morning and EVERY afternoon. As I told this to Lori one day, she immediately jumped into action! She first came up with the idea of a vibration pillow, it worked 75% of the time. Then she came up with a way of taking a weighted pillow and laying it across his lap to hold his hands down. He had this severe hands flying, I'm falling type spells. This feeling would scare him and he would start crying all over again. As a reminder, at this point he still cried 85% of the day and had very little calming once he got started. And once again, God did prevail, these techniques helped at night time too. He actually started sleeping for a few hours at a time, in stead of minutes. What a miracle!!!

After several weeks went by, I found comfort in leaving Drake at the Greensboro Cerebral Palsy Infant Toddler Program. I started getting my "grove" back, as some call it. No I haven't lost the pounds I added during all this, no my house is still a mess and the laundry's still behind and yes, I still cry from time to time. I Do though have a good outlook about Drake, about my family, about how the world isn't so cruel after all. How does that commercial go, PRICELESS!!!

Drake's Story Video; please click on picture

Drake's Story

An Exceptional Family

After we accepted the space open for Drake at Gateway, my friend Leslie reminded me that there is a Greensboro Fireman who's child use to attend Gateway. I had forgotten he had a special needs child. David was even my training officer when I started and it seems God was going to have our paths cross again. Interesting enough, he wrote a book about his little one;Exceptional Spirit.( http://www.exceptionalspirit.com/) He sent me a copy of the book to read when I felt ready. Everyone told me not to, that it would be too difficult to hear, that the book would be depressing. (probably because everyone figured I cried enough as it was) Of course, I read it and enjoyed every inch of it! I was meant to read that book, funny how David just knew that was what I needed.If it had been any other book, I'm not sure I would have felt the connection. I picked up the phone, he knew I was going to call. I'm not sure if it was because of Leslie, or the fact he knew I needed someone who understood.

He came the next day, almost like a preacher would. He listened to me talk, he listened to me cry and he listened to my heart. He said to me" I know you are going to find this hard to believe or even understand, but I'm almost envious of you, jealous of the journey you are about to take. You have been given a gift and it's up to you to figure this out. I can now look back and wish I still had these days." WOW, how could someone feel this way about my life? This was quite a revelation to me. He had me question not only myself, but my faith and I thank him for putting these thoughts in my head that still ring true today. David, his wife Jeanna and Corbin were put here in my life to learn from. In a way it's still a part of Corbin living on. He is a very spiritual man with faith bigger than I can or could understand. He trusts in God completely and knew then as I'm sure he does now, that this was and is no mistake.

They gave me a special swing for our playground which Corbin used.I think of that him every time we go out to use it. Drake also by chance(ha,ha,ha) ended up being able to use a unique seat the Bullins donated to the school (one which gives support for those that can't sit on their own). They as a family made a special garden in memory to Corbin at the Gateway School(I see foreshadowing in this story). I wanted to say THANKS to this family for giving me some peace at this time in our journey!!!


There is a song that still to this day makes me choke up and think about this time in our lives. It's called - "Your Gonna Miss This", By Trace Adkins.The chorus goes like this;

Huh, it's hard to believe But you're gonna' miss this

You're gonna' want this back

You're gonna' wish these days

Hadn't gone by so fast

These are some good times

So take a good look around

You may not know it now

But you're gonna' miss this

You're gonna' miss this Yeaahhhh...

you're gonna' miss this...

Back to Reality?

So now that we are back and the trip went great, there were a few moments not so great. Drake had 4 fainting spells. Luckily, I am starting not to panic or feel the need to rush to call all doctors and get to the hospital. I'm not sure if this is a good thing or not, but it helped get through the weekend with out spending it in the ER.

We already had an appointment with the neurologist on the Tuesday following our trip(Thank-you GOD!!!). Even though she's not my favorite person, I went in with a steady heart and mind, and decided to try get this thing figured out. At least get started. She is ordering a test which we will have to stay at the hospital for 3-5 days minimum. Trying to catch one of these "episodes". Seems there is more concern now that they are happening more often. He had 2 more the week before we left for our trip + the 4 in Atalanta, puts the docs a little more on their toes. There is also another test ordered which will be 24 hrs in the hospital to check for sleep apnea and reflux again. She's somewhat concerned about him having these episodes at night when we might not know they are happening.

Dr.Harper seems to think that these fainting spells might be more related breathing/apnea rather than neuro. Let's hope so, even though I don't particularly take a liken to her, I am pleased with her promptness to help figure this out. We will see what the results are and her follow-up skills with this problem.

We already had an appointment with a Dr. Wooten @ Raleigh Neurology Associates in May. I'm keeping this and going for more or less a second opinion and to see if I need to change Drake to another office. I'm not to fond of the thought of driving to Raleigh, but I hear stories of families traveling much further to see who they feel is best for their children's care. I'm hoping we can get these testes done before we go to Raleigh so that can be behind us and move forward instead of living in this limbo again.

Road Trip!!!

Look what came just in time for our first real "road trip" to Atlanta, GA! How exciting to take the boys somewhere, away from here, with daddy all to ourselves. The trip was planned for Grant's 6th birthday present. For those of you that don't know, Grant is a fish fanatic. So we thought it would be appropriate to take him to see the WORLD"S BIGGEST AQUARIUM! When we first started planning this trip the thought was to take Grant alone, thinking he might want some "me time", but as turns out it at dinner one night he had different plans in mind. Shane and I were talking about who would take care of Drake and all the details that went along with it, when Grant said,"But, I want Drake to go with us to see the aquarium too." How could we argue?!?!?!?

I'm not sure if I was more scared of taking Drake that far out of town, away from all the doctors or if it was really ,I secretly wanted some, "me time". As it turns out I couldn't have dreamed of a better time with the four of us. The travel down went well even with the pit stop every 45 minutes to change Drake. Seems a long road trip is the cure for cleaning out his system! We had great food everywhere, slept well, played hard and went to all the sites we could fit in to a single weekend.

The aquarium was magnificent, a real treat for both boys. The views of the ginormous fish tanks were such that I think Drake had a chance to understand the beauty of the ocean. We left there and grabbed a snack and went across to the Coke museum, too cool for the grown-up kids! After a long hike back to the car, we jetted over to the Varsity. A true hot dog loving, greasy burger, chocolate shake, drive-in landmark. Soooooooooooooooo glad Shane found this spot and insisted we give it a try! We were told they serve several hundred people and cars A DAY, we believe it!Following that, we topped of the day with Grant getting to swim in the indoor pool back at the hotel.We went to a crazy good place for dinner, a Mongolian noodle house. You go and pick your noodle or rice and all the toppings from vegis to meat and add your pick of GREAT sauces to top it off. They then cook it on hibachi grills and when your done, you go back for more. Can't wait for one to come to Greensboro!

The next day was a trip to see the largest dinosaur bones known to man at the Furnbank Meuse um of Natural History. Only to find a real treat for me, there was an exhibit called-Blind/Sight:Conversations with the Visually Impaired. What are the chances to see what all the doctors and therapist talk about with Drake's sight. Even though no one knows for sure, it was so enlightening to get a visual of Drake's possible or lack of sight.( I'm trying to find out if the exhibit will be any where in NC in the future.) After that, we headed to the Atlanta Zoo! The pandas were a site to see and oddly enough the entire Zoo wasn't too long and we got to see it all in about an hour & a half. Pizza was the hit of the day for lunch. Swimming again, while mommy got in a little shopping time. Seems a waste to go to Hotlanta and not check out a few shopping sites! I think at this point we were all to tied to go any further and decided to have dinner in the hotel restaurant, Ruth's Chris Steak House. Probably the only time to go on a romantic dinner for four at such a nice restaurant.

We even made it home with out an "Are we there yet?" We are now home safe and thankful for the chance to have spent some time together as a family, a real family, not handicapped one, just a family.

Thank you Grant for this gift to us, on your 6th Birthday!!!