21 Things About Cameron

Okay, so I stole this idea from someone else (sorry Beth) but it seemed like a good idea. So here goes. 21 things about my little Cam.......

1. Cameron only weighed 5lbs, 4oz when born
2. He had heart surgery at just 6 months
3. Although he has 47 chromosomes, he does incredibly well
4. Cameron recently got a dog who he calls Bee Curtis.
5. He goes to school 3 days a week
6. He goes to 4 different therapy appointments a week.
7. He has many nicknames including, Cam, bird, scooter, and sweet baboo.
8. Cameron is a nanny's boy
9. He is a great little brother and a very loving big brother.
10. During a recent fundraiser, Cameron learned to say very clearly "Guys, Beer"
11. While his speech may be delayed he is very proficiant in any "ugly" words he happens to over hear.
12. Cameron didn't start walking until 3 1/2
13. He has been known to go outside on his own saying that he is going to WaWa for coffee.
14. Cameron loves books. He can sit forever and look at books.
15. He loves to have his picture taken and many times will smile a goofy fake looking smile when he sees the camera.
16. Cam's favorite show is Mickey Mouse Clubhouse on Disney, and he also likes Two and a Half Men.
17. He is able to tell us where to turn in the car to get to certain locations. Mostly restaurants but also Nanny's, Grandma's and other friends's houses.
18. Cameron doesn't sleep well, but is rarely in a bad mood.
19. He loves to ride his bike (which I will add that we have to push while he steers and we spend a lot of time heading toward the ditch)
20. Cameron is a great dancer. He knows how to raise the roof, bring it back down and walk like an Egyptian.
21. Most importantly, Cameron is a loving and energetic little boy who brings absolute joy to all those who are lucky enough to be around him.

Will I Ever Sleep Again?

It has been three weeks since that dreadful sleep study. And one thing is for sure, Cameron is definitely not sleeping now. I know he didn't sleep well before but things seem to have gotten far worse since the study was done. I'm sure that this is coincidental, probably things are worse because the weather etc. Cameron fell asleep at 8:00pm last night and I therefore, stupidly assumed that I would get some sleep. HA. Silly me. Cameron woke up at 11:00pm, crying because I had put the gate up so he couldn't get out. I did the stupid thing, because of lack of sleep, and put him in bed with me. (This has been a common occurance for at least the past week). And to say that his sleep is terrible is a complete understatement. He sits, he rolls, he gets up, he snores, he lays back down. He lays on me. It seems the only way he would sleep was if I held him.....and guess what, that prevents my sleep. I did call the ENT last week to stress that we were really having some issues now and they are supposed to have his study results within the next week or two. Sure that isn't that long if you are sleeping, but without a good night's sleep, I could quite possibly go postal. That ENT could expect to find me waiting at his office for him one morning demanding that either the tonsils be removed or this kid is going home with him for a night. :) I would love to say this is me joking, but for goodness sake- GIVE ME A BREAK!

Signed: Sleepless

3 Months Old today

Boy time flies. Today Rylee is 3 months old. She has changed so much. She is smiling and even giggling, and lucky for me- sleeping much better. Yee haw!

And as for other current events. My oldest and sarcastic son, Alek left me a message in the bathtub. He has used the letters we bought for Cameron to play with in the bath and left the following....

I couldn't help but laugh when Robert called me into the bathroom to show me this. Alek had already left for school so I decided to leave a message back. I didn't tell him my message, I just waited for him to get in the bath that night to find it.

I didn't actually ground him for it, but it was fun to hear his reaction when he thought I was serious.

5am conversations that make you laugh

Cameron arrived in my room this morning at 2am. Yep, 2am. Now that he opens doors with no issue, there is no way to keep him in and when he has his crazy wake ups during the night, he just leaves. He did however go back to sleep in my bed which meant I didn't. We had feet, elbows, knees and at some point even his head pressed into the lower part of my back which is already under construction.

At 5 he decided it was time to get up and wanted me to do the same.

Cameron: UP
Mom: No buddy, it's still dark
Cameron: OOOOOK
Mom: rest
Cameron: Snore. Ba BA BA (he pretends to snore) Awake.
Mom: No Cam, it's time to sleep.
Cam: oooook. Hold you. (which means hold me)
Mom: Okay
Cameron: Rylee?
Mom: She's sleeping
Cameron: Oh Gosh

After this, I laughed because I couldn't contain it anymore. And as you all know, once you laugh, you may as well just give it up because he then continued to do this same thing over and over until we did actually get up.

October is Down syndrome Awareness Month!

I thought that since it is Down syndrome Awareness month, I would take time to reflect on my experiences as a mom of a child with Down syndrome.

My story begins a little over 4 years ago when I first learned I was pregnant with my second child. We were very excited to be having a baby and since our other son was already 6, it seemed like it was now or never. Now don't get me wrong, we didn't necessarily plan the pregnancy, but we really don't plan anything in our lives. 12 weeks into my pregnany I began bleeding heavily and I was convinced that I had lost my baby. I hadn't of coure, but throughout my pregnany this continued and I spent many hours either in the doctor's office getting ultrasounds or on the phone with the docs. I even went as far as to rent a fetal heart monitor so that I could make sure that my baby was ok at home. I became obsessed with making sure my baby lived.

Funny enough when I delivered Cameron at 35 weeks, all of my fears disappeared and I was delighted that I had just given birth to a beautiful "perfect" baby.

It's funny now when I think back to the next day. The day after Cameron was born. The day my life fell apart. I won't go into detail of my breakdown. I will however share my initial fears. Fears of putting this burden on my older son, worrying that I would never not have a child in the house, scared of what people would think and most scary to me was the knowledge that I just simply couldn't take care of this baby. Now this is funny to me now only because I have the knowledge now that I didn't have then. So I'm able to look back and think "how foolish".

When your baby is suspected of having Down syndrome, the docs tell you but you just cannot fully believe the diagnosis until the chromosome testing is completed. In our case, this took roughly a week. (I say roughly, like I don't know that it took almost exactly 168 hours for the actual results. ) After a rough week of disbelief and pure depression I decided it was time to take action. For the first time in my 25 years of life, I prayed. And I don't mean, the kind of prayers many people ask for, a new car, a better job, the right man. I actually prayed for strength. Strength to get me through what the doc was going to call and tell me in a short while. Now I don't claim to know what the higher power is, but I do know that there is a higher power. And on that very day, the very day that I gave up the fight of trying to change Cameron, I was given what I had asked for. Strength.

I won't lie and say that we haven't had tough times. Cameron did have a heart defect that required surgery at 6 months old. And it may have been earlier if it hadn't taken him 6 months to get to 10lbs. We have had to fight serious battles with insurance companies and even the almost impossible battle of getting some type of assistance. We have dealt with stupid comments, the "R" word and the strange looks.  But we have gained a lot too. We have gained knowledge, patience, understanding, and a great love that couldn't be any stronger if this child didn't have 47 chromosomes. I can honestly say that not a day goes by that I am not completely amazed at what Cameron has accomplished and what he shows us. Because of him, we have a better appreciation for life, a stronger will to overcome and a belief that he was given to us for a reason. And even in his short time here with us, he has already taught us more than we will ever possibly teach him. He has changed our lives forever, only it's not the change I expected those 24 hours after delivery. It is a much needed change. A change for the better.

Sleepless Study

I'd like to take this opportunity to complain at the sleep study. Yesterday the sleep lab called me sayihng they had a cancellation for last night. I have been dreading doing this, so I thought it would be a good idea to go ahead and take it and get it over with before I had a chance to talk myself out of it again. So we got our stuff ready and I tried my best to prepare Cameron for what was ahead of him. He of course had no nap so he was tired. When we first arrived, he was great. He figured this was play time with just he and mom and we were gonna have a fabulous time.

Not long after we arrived they began hooking Cameron up to the many wires they use to see what exactly happens when he sleeps. Now I have to say....this is complete ridiculousness. No child is gonna sleep with this junk hooked to their head, legs, chest and neck. Shoot, I wouldn't sleep with it on. I talked him through it keeping him busy so he didn't cry and eventually we were hooked up.

Give me a break. Good grief. This is crazy. So we lay down and watched TV for a few minutes. Cameron started his tired noise and before I knew it, he was snoring. I turned the TV off thinking that maybe I was gonna get some sleep tonight. Uh wrong answer. 1 1/2 hours after he fell asleep, Cameron starts his crazy sleeping. Sitting up. Laying down. Sitting up. Laying down. Well by gosh, wouldn't you know that this was gonna disconnect some of the leads? Yep, sure did. So the tech had to come in and hook it back up which caused screaming and crying. He finally fell asleep again, only to repeat the whole process over and over again all night. I don't know what they will conclude from this sleep study other than he didn't sleep but oh well. I will say that after this is all over and he has had a bath he still didn't sleep. He was exhausted and finally several hours later zonked out in front of the TV.

He is still feeling the effects from this long night 12 hours later. And boy, I am too. This was an awful experience and to top it off, we will now wait 8- 10 weeks for results. Terrific.

What happened to nap time?

For the last several weeks Cameron has been boycotting his naps. Now I'm telling you, he needs these naps. And I think that I need them even more. Things have kinda fallen apart since he learned to open doors. Now he is impossible to keep in his room. Yesterday after school my mom sends me this pic message on my phone. Cameron, in his sweet way of playin my mom, brings his pillow and blanket out and lays on the living room floor. He believes that if he lays down for 10 minutes he will be excused from his nap. Worse than his idea, is that this actually works with my mom since she is wrapped around his finger. B Curtis wasn't misisng out on this chance to lay down and get a little shut eye. Especially since he got to lay on the pillow with his favorite friend. I will add that Cameron never went to sleep and he was hell on wheels by the time I got home. Cameron very rarely is in a bad mood even when he's tired but he gets sensitive and cries at everything. Needless to say, at 7pm it was bedtime. For Cameron and Alek, since the 10 year old decided to show his tail and talk ugly to his grandma.  As for me, I am looking for a way to keep this kid in his room for either a nap or at least some quiet time. The baby gate is great except that he stands at it and yells "mama" the whole time. Maybe a child proof doorknob is the solution??

Buddy Walk

Yesterday we went to the Buddy Walk in Virginia Beach at Mt. Trashmore. This is our 4th year of Buddy Walk and yet I'm still as touched this year as I have been the previous 3. There is nothing quite like seeing so many people with DS and their families. It's like a secret society. And best of all, you don't get any of those goofy comments or "feel sorry for ya" stares. We had a great time. The whole family went and they even had t-shirts to fit Rylee. We even took B Curtis. I don't have many photos because getting three kids and a dog ready for a walk is pretty tough and goofy mama forgot her camera. As it seems, downloading pics from my cell phone isn't the easiest or quickest thing to do. But even with all the craziness, the tunnel traffic, the long drive, and no sleep the night before, it was a great event with beautiful weather. I personally can't wait until next year so we can do it again.

The embarrassing Mother

Gosh, I remember being a teenager and being very embarrassed of my parents. I like to think that I had plenty of reason for this. My parents were dorky and they drove a dorky car. I don't remember being embarrassed really until I got into middle school which for me was around 7th grade. There were also some other issues at home with my parents that I won't go into now, but we'll just say that around this time in my life, my mom and dad were less than desirable kind of people. Still, I know that kids get embarrassed of their parents, but at 10....good grief. I don't walk around with curlers in my hair like my mother in law did with my husband and I don't pick my nose in front of people for goodness sake. This morning Alek left to go the bus stop. We can see the bus stop from our house, and he is adament that we not go with him. Since there are other children and parents there, I oblige. Today, about 20 minutes after the bus should've come, I see Alek coming back up the driveway. The bus had still not arrived. I offered to take him to school but as we were getting in the car, the bus drove by. I wanted to make sure that this was in fact his bus, so  I followed him to the bus stop. You would've thought he was late for dinner. He was  practically running to get away from me. And the whole time he was shouting mom stop. It was rather funny and because I knew it was bothering him, I followed just in spite.

I'm sure he's gonna be mad at me this afternoon, but that's ok. It's what we embarrassing parents do.