Wow! I cannot believe how fast the last 12 days went! So, we all survived the birthday week! Pictures will have to wait, the computer is at home and we are still not at home! So, lets get right to it! Michael is ONE. My parents drove down from Seattle to be here, which was awesome! It was great for Auggy, too. They camped and he slept in their tent a couple times, ate donuts, and got to have some really good times. We had a party in Monterey for our local friends, since the big bash was going to be out of town. The day of his birthday, Michael and I got up early and I looked at pictures from his birth, got all sentimental, and had a nice cry. I am not afraid to admit it! (I just can't believe how much has happened in the last year! We are all stronger and better for it, too.) Then, we took Michael for his first haircut. He did not enjoy it! But, oh man! He is even more stinkin adorable! The guy did a great job! And I didn't cry!
Fast forward to the big birthday bash. We had it at a campground that has a lake, perfect for the 90 degree weather! Kids and all, we had about 30 people! Auggy was in the water for about 8 hours! Just came out long enough to eat and watch the presents being opened. It was a great day for him! Possibly the best day of his little life so far! Michael enjoyed being passed around, doted on, and NOT going in the water! He hated it, wouldn't go in... Maybe next year. Aug was the same when he was a baby, now he's a little fish!
We camped, issue free, everyone slept. It was fun! My folks left to head back home the next morning. I always get a little sad after they leave. So does Auggy. Luckily we were still at the lake and did some more swimming and stuff to distract us. Plus, all the cousins were there, it was a great day, too!
Ok, so it's back to reality, back to the daily grind! It's funny, how on the day to day, I don't really think about DS. I feed Michael, cuddle with him, encourage him to try new things, we play, run errands, go to the park, all the same stuff I did (and still do!) with Auggy. It's when I am alone, or meet new people, or see someone I haven't seen for a while. When I get to thinking about his future, it's hard to imagine. Will people be mean to him? One of the things I want most for both my boys, is to have good self esteem. I don't want them to wonder if they're good enough, or smart enough, or "cool" enough, or handsome enough. I want them to KNOW that they are. I want them to be accepting, and accepted. I don't want them to have all the self-doubt I seem so unable to shake!
It's my job as their mother to give them that, to give them so much love and encouragement, that they are loving and fearless!
Two weeks until school starts back up for both of them. I can't wait! Michael loves being around all the kids. Auggy will see some old friends and make some new ones. In his last class, there were a few moms that seemed to have it out for him, but, thankfully, they won't be in this class! Here's hoping there's nothing but acceptance ahead, fun, and learning. I don't want Auggy to sense that negativity. He is a bright and wonderful boy. Stubborn and strong willed, definitely, but given the right encouragement, those attributes will be to his advantage. He doesn't need to see those as bad qualities, he doesn't need to be judged. He needs to be a 3 yr old! So, here goes! I will be positive! But, if need be, I will defend my boys like a mother bear will defend her cubs!
Stay tuned!
Wednesday, July 31, 2013
Friday, July 19, 2013
It's almost birthday time
4 days until the big birthday. I can't believe what a big deal it is for me! Part of it is because we won't be having any more babies, but, part of it is...hard to explain. I am so proud of Michael and the huge strides he has made, but I am not ready for him to become a toddler! Oh, I am encouraging him to walk, but I don't want those sweet only-from-a-baby snuggles, sounds, and smiles to fade away! I know, I'm being selfish, but I don't care! I will most definitely cry on his birthday, tears that are tinged with joy and sorrow.
That being said, I am making it my personal goal to have my little bug walking by 15 months. He is about ready to cruise, getting more sure-footed each day! If I can just keep Auggy from trying to push him down...the jealousy is so crazy! I mean, he adores Michael, always wants to take him with us, even if I try to plan a special outing for just the two of us, but...he also wants to hurt him...constantly! That phase has returned with the excitement over standing and his birthday coming up. Awesome. Back to having to constantly be after him about everything. I try to reason with him, which, I know is futile. He's three, I get it, but he's so damn smart, I forget and think...he'll get it, I know he will! But, he doesn't. Then, I get pissed off, then I feel guilty, then I feel double guilt because I am certain I am ruining his future by not knowing what to do now! And triple guilt for making it seem like I am standing up against him for Michael (which I am), furthering his sense of jealousy.
So, now we've got his party coming up. He shares his birthday with his big cousin who's turning 9. She desperately wants to have a joint party, so...here we go! It will be a fun day of swimming, games, laughter, followed by our first ever camping with Michael! I remember camping with Auggy when he was a little older than Michael. He slept great, while we got booted around the tent and hardly slept at all! I hope this time around will be different!
Dave said the funniest thing the other day. Michael was crying, having a hard time falling asleep due to the tooth that is forcing its way through his little gums! I was on my way to a book club meeting (child free adult time! Yahooooo! Get me outta here!), so I told him to let him go for 20 mins before picking him up. He said, "Really? Even though he has DS?" I thought that was hysterical? I mean why would DS have anything to do with forcing him to go to sleep without his mommy? I'm going back to school in the fall and Dave will have to take him to therapy once a week. I think it'll be good for him to see all the other babies and be more involved in his development!
Sometimes I get irritated by DS. I belong to the "magic babies" group, to 3 Facebook groups, plus he has his appointments we go to. I don't want his, and our lives to be centered around his disorder, but how do you do that while doing everything you can to keep him on par with typical kids? I mean, I don't want to think if Michael only as a kid with DS, but how do you do it? I see his sweet face, and I don't automatically think it, but, pretty close. It's not a judgement, it's just there. How do you stop it? Or do you? Maybe that just becomes the normal. I wonder what other people see when they look at him...the ones who know him and the ones who don't? We go shopping and everyone says, "what a cute baby!" and I say thank you, while in the back of my mind, I'm wondering, "can they tell?"
And I hate myself for even caring. It's not that I am embarrassed by it, it's more just not wanting strangers to be up in my business. I get the same feeling when some old person gives me advice about Auggy. I know they think they're helping, but in my mind I am seething and thinking, "yea, thanks, he's already got a mom!" Again, I'm being selfish, self-centered. Note to self: stop doing that.
So, what now? Just keep moving forward, keep loving, keep trying to be better. Find a balance between helping Michael and focusing too much on that little chromosome. Try to remember that Auggy needs encouragement, too. Try not to make Michael's birthday about me. Try not to care about how people see Michael, or anyone else in our family, for that matter. Just be us!
Stay tuned for birthday stories and photos!
That being said, I am making it my personal goal to have my little bug walking by 15 months. He is about ready to cruise, getting more sure-footed each day! If I can just keep Auggy from trying to push him down...the jealousy is so crazy! I mean, he adores Michael, always wants to take him with us, even if I try to plan a special outing for just the two of us, but...he also wants to hurt him...constantly! That phase has returned with the excitement over standing and his birthday coming up. Awesome. Back to having to constantly be after him about everything. I try to reason with him, which, I know is futile. He's three, I get it, but he's so damn smart, I forget and think...he'll get it, I know he will! But, he doesn't. Then, I get pissed off, then I feel guilty, then I feel double guilt because I am certain I am ruining his future by not knowing what to do now! And triple guilt for making it seem like I am standing up against him for Michael (which I am), furthering his sense of jealousy.
So, now we've got his party coming up. He shares his birthday with his big cousin who's turning 9. She desperately wants to have a joint party, so...here we go! It will be a fun day of swimming, games, laughter, followed by our first ever camping with Michael! I remember camping with Auggy when he was a little older than Michael. He slept great, while we got booted around the tent and hardly slept at all! I hope this time around will be different!
Dave said the funniest thing the other day. Michael was crying, having a hard time falling asleep due to the tooth that is forcing its way through his little gums! I was on my way to a book club meeting (child free adult time! Yahooooo! Get me outta here!), so I told him to let him go for 20 mins before picking him up. He said, "Really? Even though he has DS?" I thought that was hysterical? I mean why would DS have anything to do with forcing him to go to sleep without his mommy? I'm going back to school in the fall and Dave will have to take him to therapy once a week. I think it'll be good for him to see all the other babies and be more involved in his development!
Sometimes I get irritated by DS. I belong to the "magic babies" group, to 3 Facebook groups, plus he has his appointments we go to. I don't want his, and our lives to be centered around his disorder, but how do you do that while doing everything you can to keep him on par with typical kids? I mean, I don't want to think if Michael only as a kid with DS, but how do you do it? I see his sweet face, and I don't automatically think it, but, pretty close. It's not a judgement, it's just there. How do you stop it? Or do you? Maybe that just becomes the normal. I wonder what other people see when they look at him...the ones who know him and the ones who don't? We go shopping and everyone says, "what a cute baby!" and I say thank you, while in the back of my mind, I'm wondering, "can they tell?"
And I hate myself for even caring. It's not that I am embarrassed by it, it's more just not wanting strangers to be up in my business. I get the same feeling when some old person gives me advice about Auggy. I know they think they're helping, but in my mind I am seething and thinking, "yea, thanks, he's already got a mom!" Again, I'm being selfish, self-centered. Note to self: stop doing that.
So, what now? Just keep moving forward, keep loving, keep trying to be better. Find a balance between helping Michael and focusing too much on that little chromosome. Try to remember that Auggy needs encouragement, too. Try not to make Michael's birthday about me. Try not to care about how people see Michael, or anyone else in our family, for that matter. Just be us!
Stay tuned for birthday stories and photos!
Thursday, July 11, 2013
A year in review
In 12 days, my Michael will be 1 year old! I cannot believe this is even possible! I decided to start this blog about a month ago, realizing how fast things were changing and that I would want a way to remember it all. It may also help when times get tough, to have a way to process everything... Or maybe times won't get tough...who knows?
So, rewind to 353 days ago and Michael burst onto the scene, sporting an extra chromosome that wasn't invited or previously known about. They told us while I was still in outer space, on morphine, so I don't think it really registered. I mean, I was in shock, and it got a lot more real when they wheeled him off to the NICU for tests and whatnot. But, I was still in total denial, I couldn't even SEE these so-called "markers" they were talking about-- he was just my perfect little bug!
My mother in law (MIL), recalls how we just took everything in stride, and seemed unphased, but I don't think that is really true. I was so numb and just, like, whaaaaaat? When they found the hole in his heart and wanted to keep him in the NICU, it started sinking in...our baby has...something. Down Syndrome. I didn't even know a single thing about it, except that I could recognize a person with it, and that they obviously had a delay. So, how to process this news, when there is no way to truly understand it?
Well, Michael's Dr. in the NICU gave me the best advice anyone could have given. Don't read anything, don't google anything, just get to know your baby. You will know if something is wrong, don't scare yourself with all the "what-ifs" and info out there. So, that's what I did!
Now, going home was crazy. Auggy, who was only 2 at the time, was insanely jealous. Literally tried to kill Michael at times. Other symptoms were sleeping horribly, crying a lot,just acting crazy. All the while, in the back of my mind is: my baby has a hole in his heart, and it is my responsibility to know when he is in distress, but, how will I know, what if I don't know in time? And also, my baby has DS.
But, we just go on, don't we? What else are you going to do? Auggy loved his baby brother and slowly got less crazy, I got used to not sleeping, got to know Michael and his adorable ways, life moved on. Then, we met his cardiologist. Well, first we met a different one, who told us he had a 50/50 chance of needing surgery. Then, we met the man who will be his cardiologist for the next, oh
18 years! He took one look at Michael's heart and said, "He needs surgery yesterday!"
Oh. My. God. That day, Oct.17, 2012, was the hardest day of my life so far. They took my baby away, and I had to trust total strangers that they would give him back to me, alive! And they did, in record time, even! Oh, my Michael was amazing! He was a total rock star! When I finally got to nurse him again, I cried and held him so close!
So, what has happened in the 9 months since surgery? He is in Early Intervention, getting physical therapy and special Ed, we belong to a "magic babies" group of all DS babies. He is meeting his milestones: crawled at 10 months, and just started pulling to stand. He is so stinking funny! He loves playing with Auggy, loves to laugh, loves other babies, loves being outside, loves reggae music, loves sweet potatoes.
What lays ahead? Ah, who knows and that is what I am really afraid of. To me, he is perfect. He is an adorable, sweet, precious little boy. Will I always see him that way? How will I feel if something goes wrong? How much of a delay will he have? Will it bother me, or will I roll with it? How will it be for Auggy when he finally realizes his brother is "different?" I'm basically scared of sucking as a mom. What if it turns out I'm not as strong as I thought I was and I fold under the stress of having a special needs child? Or, what if I ruin Auggy's childhood being overprotective of Michael? What if Auggy resents Michael?
But, in the meantime, I have each precious day with my two amazing boys. Auggy, so rough and tumble. So capable in all the ways that Michael may never be. He is strong, coordinated, so smart, so charismatic. Then, there's Michael, so sweet, loving, funny, ADORABLE, precious. I wouldn't trade it...well...I can't imagine life any other way than the way it is. So, i guess that is perfect.
So, rewind to 353 days ago and Michael burst onto the scene, sporting an extra chromosome that wasn't invited or previously known about. They told us while I was still in outer space, on morphine, so I don't think it really registered. I mean, I was in shock, and it got a lot more real when they wheeled him off to the NICU for tests and whatnot. But, I was still in total denial, I couldn't even SEE these so-called "markers" they were talking about-- he was just my perfect little bug!
My mother in law (MIL), recalls how we just took everything in stride, and seemed unphased, but I don't think that is really true. I was so numb and just, like, whaaaaaat? When they found the hole in his heart and wanted to keep him in the NICU, it started sinking in...our baby has...something. Down Syndrome. I didn't even know a single thing about it, except that I could recognize a person with it, and that they obviously had a delay. So, how to process this news, when there is no way to truly understand it?
Well, Michael's Dr. in the NICU gave me the best advice anyone could have given. Don't read anything, don't google anything, just get to know your baby. You will know if something is wrong, don't scare yourself with all the "what-ifs" and info out there. So, that's what I did!
Now, going home was crazy. Auggy, who was only 2 at the time, was insanely jealous. Literally tried to kill Michael at times. Other symptoms were sleeping horribly, crying a lot,just acting crazy. All the while, in the back of my mind is: my baby has a hole in his heart, and it is my responsibility to know when he is in distress, but, how will I know, what if I don't know in time? And also, my baby has DS.
But, we just go on, don't we? What else are you going to do? Auggy loved his baby brother and slowly got less crazy, I got used to not sleeping, got to know Michael and his adorable ways, life moved on. Then, we met his cardiologist. Well, first we met a different one, who told us he had a 50/50 chance of needing surgery. Then, we met the man who will be his cardiologist for the next, oh
18 years! He took one look at Michael's heart and said, "He needs surgery yesterday!"
Oh. My. God. That day, Oct.17, 2012, was the hardest day of my life so far. They took my baby away, and I had to trust total strangers that they would give him back to me, alive! And they did, in record time, even! Oh, my Michael was amazing! He was a total rock star! When I finally got to nurse him again, I cried and held him so close!
So, what has happened in the 9 months since surgery? He is in Early Intervention, getting physical therapy and special Ed, we belong to a "magic babies" group of all DS babies. He is meeting his milestones: crawled at 10 months, and just started pulling to stand. He is so stinking funny! He loves playing with Auggy, loves to laugh, loves other babies, loves being outside, loves reggae music, loves sweet potatoes.
What lays ahead? Ah, who knows and that is what I am really afraid of. To me, he is perfect. He is an adorable, sweet, precious little boy. Will I always see him that way? How will I feel if something goes wrong? How much of a delay will he have? Will it bother me, or will I roll with it? How will it be for Auggy when he finally realizes his brother is "different?" I'm basically scared of sucking as a mom. What if it turns out I'm not as strong as I thought I was and I fold under the stress of having a special needs child? Or, what if I ruin Auggy's childhood being overprotective of Michael? What if Auggy resents Michael?
But, in the meantime, I have each precious day with my two amazing boys. Auggy, so rough and tumble. So capable in all the ways that Michael may never be. He is strong, coordinated, so smart, so charismatic. Then, there's Michael, so sweet, loving, funny, ADORABLE, precious. I wouldn't trade it...well...I can't imagine life any other way than the way it is. So, i guess that is perfect.
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