Letting Go...

These past few days have been very hard for me. I had been looking forward to Tucker's new school year for a long time! I know that being at school all day is what he needs for his development and therapy. He really needs a teacher in charge of him who makes him follow set rules and a routine, unlike being at home with me! And I have been looking forward to a break! I mean, really looking forward to it, this summer was a killer for us....20 minute rides to and from preschool 5 days a week, Gymnastics therapy over an hour away, two OT sessions each week, swimming therapy about 30 minutes away, and two speech therapy sessions...by they end Tucker and I had both had enough, and my poor car probably never sat in the driveway! But at least I was with Tucker for most of his sessions, so I knew what he was doing and learning. Tucker's new teacher writes notes about his day, but now there are 8 hours unaccounted for, which is a bigger deal than I thought. It really makes his lack of conversation VERY noticeable...he can't even answer "yes" when i ask him if he had a nap or if he liked the bus ride? I can't ask him "what's your favorite thing about school?" or "tell me the name of your friends"....the stuff moms live for, right? All of the moms who sent their little ones off to kindergarten last week were very heartbroken I'm sure (and I'm not minimizing those feelings), but at the end of the day they got to hear all about it from little ones bursting with stories....me, not so much. Of course, what did I expect? Nothing really, but I did not expect it to hurt this badly. My poor sister (I know, which one?? Sarah) called me yesterday, and cheerfully asked, "How was Tucker's day?" I snapped at her, "I don't have a clue! He can't talk, did you forget that!??" I apologized to her, and she encouraged me to email the teacher, which I did....I just didn't realize how much those questions would bother me.... Parents are so proud to hear their kids' stories, I am 26 and I still crack my mom up with my crazy stories....I love listening to the craziness that comes out of my cousins' mouths, they think the funniest stuff are the most important things in the world, and I love to hear all about it! So this year I will not be just letting go of my son (yet again) but I will be letting go of so many dreams....dreams that I thought I had grieved and gotten over....obviously not. Tucker also rides the "short" bus, which could be its own conversation I know. Tucker LOVES any kind of transportation, and last year they spent time on the bus outside (it was parked) to get used to it, and Tucker was so well-behaved. He rode a bus last year for his field trip, and he sat still the whole time and loved it. The bus ride from our house to the school is really less than 5 minutes, there is a driver and an aide, seatbelts, and less than 5 kids....really there is no reason for him to NOT ride it. Did I mention he loves it? lol, he runs to it every morning and doesn't even hug me good-bye! That all being said, it really hurts my heart....I know how other kids make fun of the "short bus" and yes I really do care how my son is treated at school. I know that this should not be an issue throughout primary school (hopefully!), but kids can be really mean to kids that are different, and I am not looking forward to that. I think I have always viewed "letting go" of Tucker in a completely different light than other moms. Letting go in Holland must not be the same as it is in Italy....my child was rushed away from me at birth, I did not see him again for 48 hours, did not hold him for 7 weeks, and did not take him home for 8 1/2 months. From that point we had home nursing for almost 3 years, and he had so many therapy appointments and medical procedures that I had to let him attend without me. This was all done with the hope that he would one day be "better." I have been letting go of many dreams this summer and I think I will only have more of this. The idea that MY child would not learn to read and write and just love books(because honestly I'm about the biggest bookworm/nerd ever!) or say "I love you, Mommy" and actually mean it are dreams that will be especially hard to give up and grieve. I have been looking at the bright side and for the silver lining in the clouds for 4 years....I have become very good at it, and honestly it's exhausting. I have been letting go of that need to constantly make everyone else feel better about my son's condition(s), it has made for some pretty sad conversations, and also a feeling of a huge burden being lifted. But it has also opened the floodgates for so much sadness, which is what I'm muddling through right now. I'll end with some lyrics from a song that has gotten me through some tough times, and continues to mean more to me as time goes on: "I was sure by now, God you would have reached down, and wiped our tears away, rushed in and saved the day. But once again, I say 'Amen' and it's still raining" "I remember when, I stumbled in the wind, You heard my cries, You raised me up again, But my strength is almost gone, how can I carry on, when I can't find You?" "As the thunder rolls, I barely hear you whisper through the rain, 'I'm with you' And as your mercy falls, I raise my hand and praise the God who gives, and takes away." "I will praise You in this storm, and I will lift my hands, for You are who You are, no matter where I am. Every tear I've cried, You hold in your hand, You never left my side, and though my heart is torn, I will praise You in this storm." Casting Crowns, Praise You in this Storm

Tucker Ray at OneTrueMedia.com

I am posting Tucker's Naked Neck Video. I put this together for his Naked Neck Party in July, it has pictures of him from May 2006 to May 2010, complete with music so make sure you pause my Music Playlist so you just hear the music for the Video.

Photo and video editing at www.OneTrueMedia.com

Blood Sugar Issues

Tucker's first day of school went well. Yesterday I picked him up early for an appointment with the Diabetes Educator; the teacher came up to me and told me how well Tucker was doing that day:) He was already used to the routine and he is getting used to the rules. That is great, he is such a big boy! Sometimes I think he changes personalities on the school bus, haha, he turns into Tucker Ray, Model Student, on the way there. Kind of like the transformation that occurs when he stays at his grandparents, he is always "good as gold" and "such a sweetheart" with them! Tucker had high blood sugar three weeks ago in Houston, then last week in BR he had a regular reading. So we were all hoping the one in Houston was a fluke. Yesterday the nurse gave us a meter (we picked a purple one-that's Tucker favorite color....meaning the only one he knows!) with some strips and the whole get-up and taught me how to use it. It is not a hard concept, and she gave us a new model with a very small needle so the stick doesn't even hurt Tucker. The problem is that the needle is so small and delicate that barely any blood comes out:/ We have to "pump" his finger for the blood, and Chris is much better than me at this. Maybe because I am too scared to squeeze his finger as hard as it needs to be squeezed?? Yesterday afternoon his blood sugar was 205, (way too high), then last night before his last feeding it was 83 (perfectly fine), but an hour after his last feeding it was 348 and then 298 (we took it twice because we thought we messed up with that high of a number!). This morning it was 88 before breakfast and then 247 right before he got on the bus (which was also an hour after his first feed). The original plan was to monitor his blood sugar 3 times a day for 4 weeks and then report back. Well the Diabetes nurse called me last night; she said because his sugar was 205 yesterday, the dr wanted us to just monitor it for one day and then they would take immediate action. Thank goodness, because that 348 last night really freaked me out. I called the pedi nurse at 8am, I listed off all of the numbers, and she is supposed to call me today. They will likely change his formula to a diabetic formula. I actually blend up his food once a week and feed it to him in his g-button at home (he gets fruits, veggies, soy milk, grains, fats, and meats), and he has really put on weight since we started this (in a good way!). He gets Pediasure twice a day at school, the blended food has to be refrigerated and it's thick, so we thought Pediasure would just be easier at school. But I guess now he will have to just do the diabetes formula?? We will see. Ugh, this is so overwhelming right now. I know in the grand scheme of things pricking your kid's finger is NOT a big deal, we've been through much worse! But today I had to prick him about 8 times, and use 8 meter strips (which are supposedly ridiculously expensive) to get a reading. Tucker is going to start hating that little purple meter! And of course with sugar readings that high, this is definitely an issue we should be monitoring and acting on. Unregulated sugars can cause horrible damage to the body's cells, and obviously Tucker needs his cells as healthy as possible. ----------------------------------------------------------------------------------------------- In other news, Tucker has been hilarious lately! He uses his words so appropriately, and really surprises us! He is starting to use 4-word and sometimes even 5-word sentences, which if you know him, means that he can boss all of us around even better than before! For example, he used to just scream "tent! tent!", well now he says "get in the tent." He loves opening and closing things, for the longest time "open" was the only sign he knew. Well now he says "open box peez" (please) or "put it in poos" (meaning put something in my purse). Sometime last week I had a particularly hard day and I laid down with him that night to cuddle before bed. I hugged him and he looked at me, pushed me and said "get out my bed." I was surprised and kind of proud of him, and of course I obeyed. The other day he called my brother "Unca Dylan" instead of just Dylan, it was so cute. I made a Naked Neck Video for Tucker's Naked Neck party a few weeks ago, it is about 7 minutes long, and it's pretty good if I do say so myself! So I ordered DVDs of it for us, my parents, and Chris's parents. Well this video has replaced Mickey and Barney as Must See TV in our house, at least once a day Tucker climbs on my lap and demands "baby moobie." I ask him who is the baby? He tells me "tucker" even though I don't think he really understands that's him. Tucker also still LOVES my blue purse. He sleeps with it most nights instead of a stuffed animal. On our last trip to Houston, we stayed in a hotel (according to Chris, a seedy hotel, I am NOT allowed to book our trips anymore) and Tucker had a hard time falling asleep. We were exhausted, so after about 30 minutes of fighting I said "you've got your pillow, you've got your purse, now GO TO SLEEP!" Chris asked me "are you serious? did you really just say that?" And the worst right now....well for me at least....Tucker just loves when Chris plays his PS3 video games:/ Chris walks in from work, and Tucker brings him the controller and says "game". Of course Chris has to take a shower and eat first, but Tucker does not like that arrangement! Chris keeps the games out of Tucker's reach, but Tucker points up to them and says "open game." As I often say about hunting, and now with the PS3, I am so outnumbered in this house!! I don't think Tucker's vote should actually "count" yet, he is just a little kid, but Chris insists that it does. The bad side to this (for Chris) is that Tucker has now realized that when he presses the eject button, the PS3 game comes out and Daddy has to stop playing. So he now controls when Chris starts playing, and when his gaming time is up! Oh, what are we creating here?? A spoiled little monster! No wonder why he behaves so much better at school:)