Looking back fondly

I recently came upon some pictures of Rob & me and I started thinking about the ever changing way I look at him. I always look at him fondly even when I'm not. It's amazing to look at these pictures and remember where we were and what we were doing. I think back & I remember how naive I really was. I remember how much fun we've had. I think about how amazing it is that our paths were set to connect and take us on this ever evolving journey of happiness & strength. We have changed so much in the last (almost) 7 years and while I might change how we got here, I wouldn't change where we are.



 

And here we are. More in love than ever. Stronger than ever. And most importantly, grateful for each other and our lives together. 

I have been neglecting my blog

And for good reason. I'm just stinking tired to sit down & put my thoughts into a cohesive piece. I am going today to the dr to hopefully have my synthroid regulated and be back to my peppy self.

Today the kids, Rob & me sat down & had fun with paint. I got all the paint together and set it out nicely on the table. Then I got the pasta Meredith wanted to use to make daddy a necklace and she got to work. And of course no day is complete without Sean partaking in the festivities. So he painted too.

Today was my first lesson in why younger siblings get to do everything younger than their older brothers & sisters. We just couldn't leave him out. It was lots of fun and a big mess. Nothing better than that right?





 











































It also felt good. We spend so much time making sure Sean does enough of his exercises and making sure Meredith eats. It's nice to just spend some time having fun.

I'm heading to the dr and Rob will be here with Sean for his speech therapy today. So I started dinner already. We're having spaghetti with meatballs. Sean was right there to help.



See how nicely he's sitting in his seat? That's no accident! He's doing amazing things these days. I am so excited to see such quick progress from the physical & occupational therapies. I'm still feeling out the occupational therapist. So far she seems nice & we seem to work well together. Hopefully it will only get better. Sean always gives her funny looks that he doesn't give his other therapists. He throws lots of side eye her way. Hmmmmmmm

And in other news..... if you take your pants off in the house and Meredith happens to see you do it, she will immediately tell you "don't pee on the floor." I guess I have reminded her of this a few times. So this is now a daily reminder from her to me. And thank goodness no? How many times would I have peed on the floor if she hadn't reminded me?

6 month well visit

Sean is 13lbs even, He gained 1/2 an oz since Monday. He's 25.5" long. Yay!! Sean's testicle finally came all the way down so no urologist for us. Sean showed all of his tricks and only whimpered when he got 2 shots. We go back in 2 weeks for the Dtap vaccine. I wasn't going to give Sean 4 shots in once visit. I just don't like that. I really don't even like to give 3 vaccines in one visit. It just seems like so much to give one little person.

Then I had to fight for my son's diagnosis. Our insurance makes it so that we don't have to pay for well visits starting this year. The pedi's office automatically charges if there is a 2nd diagnosis. So the 1st diagnosis is always well child (unless of course we go in because one of them is sick) and then they put the 2nd as trisomy 21.

So today I asked how come I'm paying for the well visit? The girl said because there is a 2nd diagnosis. I said ok, but it's not like your treating the trisomy 21. She said, "but we're monitoring it." And I asked "for what? it's not like it's going to change and you can't treat it." I asked if my logic was off or if their practice was off. So she tried to argue that they monitor the trisomy 21 for problems. She said "it's like a heart defect. They monitor it." So I said, "ok, but a heart defect is treatable and does change."

Again I argued the point that he's always & forever going to have 47 chromosomes. It's never going to change & it isn't a disease. If he develops something related to the trisomy 21 then that's what they'd be monitoring & treating. She finally agreed with me and didn't charge my well visit. :)

I bet you didn't know I was now a lobbyist. Who knew that I'd be the one to take it on? I guess if anyone should be doing it, it's me right? I have a big enough mouth.

So now we wait. If & when Aetna decides not to pay for the well visit because of the 2nd diagnosis, I'll be arguing with them too.

Dear Sean, You're 6 months old

How did that happen exactly? Where is it written that you're allowed to sail through the months and just get bigger? I guess it had to happen. I guess I really didn't have a choice. And if I have to be quite honest, I'm pretty pleased with how you're growing. It excites me.

You're 6 months old. A whole 1/2 a year. In that time you have taught us so much. You make us beam with brightness each and every time you look at us with your bright blue eyes & smile as big as you possibly can. In 6 short months we have watched you go from helpless newborn to an amazingly playful infant who reaches out to explore everything around you.

Right now you're starting to sit up on your own. You've learned how to roll over onto your belly from your back and then back again. You're starting to put weight on your legs. The way you lift your head is nothing short of a miracle. You've started to really respond to your name and learn how to manipulate your toys.

Your speech and physical therapists couldn't be more proud of you. Every time they come for a session they ask what you accomplished. They just know that you're going to have new tricks for them each week.

You're speaking. You're saying, "mama", "dada", "ga ga", "oh", "hi", "nom nom" (you can thank Rosie, your therapist, for that one) and "ehma" which Meredith seems to think is her. We know you have no idea what those sounds mean, but we are so excited that you're saying them. You try to mimic all of the sounds you hear. It's really very amazing to hear. Your voice is like sweet music to our ears.

You're eating amazingly well. In fact, I joke all the time that I finally got an eater. It's such a joy to watch you really enjoy the different tastes & textures. Rosie always remarks about how excited she is to come see you. She says it's great encouragement for her to see you do so well. She always says that it's because of us (mommy & daddy) that you're doing so well, but without her we wouldn't know how to do your oral motor exercises. You love them now. You giggle when we "tickle" your cheeks.

You make friends where ever you go. You have this magnetism about you that I wouldn't believe unless I saw it with my own eyes. People are just drawn to you. I'm sure it's because of the immense light that shines from you.

I see your quirks. I see your smile. I see your light. I hear your giggle and your voice. I see that people have no choice, but to love you. I see how much you teach people. I see how much Meredith loves you and how much you love her. She certainly wouldn't let anyone else lay on her back, but you. I see that, just like the rest of us whack-a-doos, you have a zest for living & learning.

Before you came, I remember not wanting to be the mother who had a son with Down Syndrome. I remember not wanting you to need heart surgery. I kept praying that it was all some sort of bad dream. And now, here we are. I'm proud to be known as Sean's mother. And hey did you know he had Down Syndrome? I'm proud to tell people you not only made it through heart surgery, but you did it in record time.

I can't remember what my life felt like before you were born and it's probably with good reason. Our lives were certainly lacking for something. Our lives had a hole. When you came, you filled that hole.

We love you and we thank God everyday that you're here with us.

Happy 6 months to you our sweet baby boy.




 

Feeling empowered

When it comes to Sean and his designer genes, I have chosen to pick my battles. I personally don't care what you call other people or situations. I am not bothered if you use the word retarded in any context other than my children. It is what it is. Ok that's not entirely true. I am bothered by it. I just choose not to fight that battle. Part of that is because my perception of retarded is to go backward or to stop moving forward and my child is doing neither of those things. So he may learn things slower than other folks, but he will never go backward or stop moving forward. I am more sensitive to other people who do find it offensive though. If someone asks me not to use the word (if I do say it), then I take great care not to use it.

The battle I have chosen to fight is the people first language & thought process. My son is not "A Downs". He is not "donwsy". He is a child named Sean. He happens to have down syndrome in much the same way "you" have brown or blonde hair. Your genetics decided that for you. So your blonde hair looks just like Sally's blonde hair. And your brown eyes look just like John's brown eyes.

Today we went for Sean's follow up appointment with the GI specialist. I really like Dr. T. Today he had a resident with him learning the ropes. She came in to take a history. The same history that is in the charts. If I wasn't allergic to guinea pigs, I'd be happy to be one for her.

Sean now weighs 12lbs 15.5 oz. That's about 1.5lbs that he's gained in a month. YAY!!! He's 24.5" so he grew 1/2 an inch. Then she started to plot his growth on the growth chart. Me being the nosy mother I am, I hovered over her shoulder. Then I asked where the down syndrome chart was. She asked me why she needed it. Um...... because he has down syndrome. And here is where I get empowered.

Her: Why do we need a ds growth chart?

Me: Um.... if you had read his chart you'd have seen that he has down syndrome.

Her: Really? He doesn't look Downs.

Me: He's not down. He's actually quite happy, but he still has down syndrome.

Her: I'll look for the chart.

Me: Yes. Thank you. I appreciate that.

It's not a loud battle. But it is a constant battle. When Dr. T came in, he explained that our conversation would be split between the 3 of us. He'd be pointing things out to his resident and having a conversation with me as well. That's fine. Dr. T asked her to present the case as she would during rounds. She did and said "here is Sean (pronounced it Seen) Scott. A 6 month old downs boy." And I stopped her and excused myself to Dr. T. I said, "I'm sorry, but it's Sean Scott. A 6 month old boy WITH down syndrome or trisomy 21." Dr. T thanked me and we went on.

I was empowered! Sean couldn't have cared less now, but I'm sure in the future he will. And hopefully by watching & listening to me, he'll feel just as empowered and not be afraid to speak up & let the world know he's Sean. A little boy with Down Syndrome.

In other news...... Sean is off the prevacid and we go back in 2 weeks to see if there are any changes.

I haven't remarked about Sean being 6 months old yet. It's not that I have forgotten or haven't wanted to mark the occasion. I do. We took pictures yesterday to mark the occasion and I've been working on a letter to Sean. I just can't make it through the letter without crying. I am so proud to call him my son.

My view from the floor

While playing with the kids on the floor I looked up & saw this. I was helping Sean to sit while Meredith climbed into my back. I don't know why it struck me, but it did.

I have learned.........

I learned the true meaning of unconditional love. I have always loved Meredith unconditionally, but she wasn't "flawed". She was easy to love. I had no idea whether or not I could love Sean. I didn't know whether or not I'd be able to look at him & just see Sean. I didn't know whether or not I would only see down syndrome. When he arrived, none of it mattered. His arrival showed me the true meaning of unconditional love. Not only did I love him, it was easy. And I did it in spite of his "flaws" because they  make it easy.

I learned the true meaning of fear. When Sean went into surgery I was afraid for his life. I was fearful that he would never come home to me. I was afraid that Meredith would be completely traumatized by not having Rob & I home. I feared Meredith would resent us and more importantly, resent Sean forever. I feared that I wouldn't be able to handle the stress that comes with raising two kids under 2 years old. I feared I wouldn't be able to cope with raising a child with special needs. Even though his needs aren't so special yet, outside of the heart surgery.

I learned just how strong our marriage is. I feared that my marriage wouldn't be strong enough to handle all of the stress of 2 kids, a surgery, 2 dogs, therapies, moving and all of the things that go along with life. Not only did we survive, but we have grown stronger together.

I have learned that I don't possess strength. Strength possesses me. Like a little pump, it knows just how much I need for any given task that way I don't walk around looking like Rosie the Riveter all the time. 

I have also learned that it takes just as much strength to raise a child with Down syndrome and make it through open heart surgery with no major breakdowns as it does to kiss a 2 year old's scraped knee and promise her it will be ok. 

I learned what it means to be busy. Truly, truly busy. Some days my calendar reads like an NFL play book.

I learned more about Down Syndrome than I ever thought I'd need to. Obviously for a good reason. I now know more than any person should and can probably host seminars to educate others.

I relearned how to lean on my husband. He's my rock. Thank you my love!

I learned how to live. I recognized that I was spending to much time being a mother/teacher that I wasn't spending enough time living the moments with Meredith and now Sean. I learned how to breathe in the freshness of my kids and see the world for the 1st time all over again through them.

I learned how to just walk away and not feel guilty about it. I recognized that I couldn't make anyone else's problems my own or else their problems would consume me. I also learned not to feel guilty for my feelings.

I learned that with each new experience I am the same, but I am different.

I have learned how to be accepting of just about anything. My life has been put into perspective that a lot of things don't matter at all or as much as they once did.

I have learned how to be an assertive fighter. I have learned how to fight for my children in a way that helps instead of makes me look crazy. Although... I do have psycho mom waiting in the wings just in case. My kids will get what they need!

I have learned just how vain I really was and still am. I was scared of what Sean would look like when he was born because of my preconceived notion of what Down Syndrome looked like. I'm still pretty nervous..... no that's not the right word.... curious (yep that's it) about what he'll look like when he's older. I'm concerned about how Meredith will see her brother as they grow up.

I learned to be open. In starting & continuing with this blog I have learned to be open with people. I have learned that it clears the soul and I'm able to let things go because I have somewhere to work them out. I have also learned that by being open, I allow others to be open. I give others someone & something to relate to.

I have learned how to teach my kids in a way they will gain the most from and those ways are very different for each of them.

I have learned that my true friends don't have to live nearby to be close friends. Love you guys!

I have learned that patience is a virtue that I just don't possess and have had to learn how to work around it.

I have learned that my life will forever be constantly evolving and that I can't control everything. I can only control how I react.

Here's to you 2010. Thank you for opening my eyes to wonders I never imagined possible. And welcome to 2011. I am hopeful that this year will be just as exciting as the last and that I will continue to learn & evolve into a better person, wife and mother.