5.22.2013

heal

Healing is such an important aspect of the human race.  

A child falls down and gets hurt.  His scrapes will soon heal.
A momma gives birth.  Her body will heal.
A girls gets her heart broken.  In time she will heal.

Your spirit heals, too.

I'm sure you've noticed that I'm writing here less often lately.  I think it's because I am beginning to heal.

I once told someone that this blog is the most selfish thing I could have done for myself post-babies.  Yes, I blog to keep a record of A&R's milestones.  I blog to raise awareness.  I blog to support those who are in my shoes.  But I also blog so that I can continue to talk about my experience in a way that I feel won't burden those around me.  You can read if you wish.  But you're not forced to sit there listen to me ramble. 

I know that healing is a very long process, and even 20 months later I can't say that I am completely there yet.  But I've definitely gotten over some things as of late and I am beginning to feel more 'normal'.  

I no longer feel the need to adjust A&R's age when asked how old they are.
I no longer cry every time someone asks me why Ryan isn't walking yet or when I talk about our story.
I no longer feel pangs of envy when a friend announces their pregnancy.
I no longer feel all that different. 
I can just be.

This doesn't mean that I am living in denial.  Believe me, I know our family is different and will always be.  But I'm at a really comfortable place right now, where I have embraced our crazy life.  And seriously, the pride that I feel every day when my boys do something new, is beginning to overshadow any sadness I may feel for their lack of an easy life.  

The other day Seamus and I had a random day off together so we decided to take the boys back to their first home.  We visited the NICU where they spent the first 5 months of their lives.  We left a little disappointed because no one was really around to visit with, but on our way out of the hospital we ran into our favorite nurse.  She asked about how the boys were doing and as we discussed A&R's progress and struggles, we were reminded once again how truly lucky we are.  

I will never forget our experience of where my kids came from, but I know that in time it won't be the center of my world anymore.  Because focusing on the past is not going to benefit A&R's future.  I must focus on the here & now, and be present for them each and every day so that they can flourish in the future.  

Thank you boys for teaching your momma the most important lesson there is.  

5.14.2013

ryan, oh ryan


Our little friend, Ryan, has had a lot going on lately.

Back in January, little man was diagnosed with CP.  Subsequently, he had some evaluations at NYU that were ordered by his physiatrist.  These evaluations didn't really tell us anything we don't already know.  Ryan is significantly delayed in his gross motor skills.  Ryan has trouble using his right arm and right side of his body.  Ryan needs therapy.  The clinicians at NYU recommended that in addition to his Early Intervention Services, Ryan should be receiving private therapy.  They wanted twice a week for PT and twice a week for OT.  At first this was a little shocking and sent us into panic mode.  How will we fit in four more therapy sessions each week on top of the 19 (yes, 19!) that A&R already get each week?!  This is crazy talk.

Well, after some thought and the opportunity to check our emotions, we decided that we can swing once a week and were all about private therapy.  After all, it would help Ryan get the equipment he needs much faster (We suspect he will need a stander and/or walker at some point).  So we started the process of getting it approved by insurance, and as luck would have it our insurance company denied our claim based on "overlapping services".  Since he is getting so much therapy already through EI, they decided he doesn't need any more.  We can appeal, which we will (mental note:  send in appeal).  But for now we've been focusing on the strides that Ryan has been making with his wonderful and dedicated EI therapists.

Case in point:  One day, yes, one day after Aiden took his first steps, Ryan stood.  He needed assistance from both his therapist and a fitness ball.  But this kid, who previously couldn't bear any weight on his own two feet, said, "I want to walk too!" and he stood.  Since then we've been doing some nifty exercises to help strengthen his legs and get him used to feeling the weight of his body being supported by them and he is really making progress.

As if this wasn't huge enough, Ryan surprised us all last week when he decided enough is enough and he rolled.  Now I know I posted before that he rolled with the assistance of his therapist, but this time he did it all alone.  No one positioned him, no one helped him.  He did it by himself.  For your viewing pleasure:




He's done it around 5 or 6 times since then, but he has to be in the mood and it is always accompanied by some whining.  Regardless, he has learned to manipulate his own body and this is a huge step in the right direction.

His sleep, however, has gone back in the wrong direction.  Ryan is in the middle of getting a bunch of teeth, and so, he isn't sleeping again.  We are trying our best to make him comfortable, and I have a few new tricks up my sleeve, but in the meantime we are living on little to no sleep again.  And caffeine.  Lots and lots of caffeine.

That about does it for Ryan.  He's really grown in the last week.  His face has changed and he looks like a little boy now.  Even though I ask him, "Who's the baby?" and he gestures towards himself, I know he's not.  He's no longer a baby, but a toddler.  And here is a video to show you just how grown he is.


5.09.2013

you can't stop him now

A couple weeks ago I posted that Aiden has started to walk. He took his first six steps only hours after I mentioned that we knew he would walk soon.  He then promptly took a nose dive to the floor but got back up and took three more steps.  He's been practicing ever since and he can walk up to 30 steps at this point without falling down.  He still crawls quite a bit, but it's mostly because he gets so excited walking that inevitably he falls down.  He practices every day though, and he has learned to pivot and turn, and he even does this little hop. 

It took two weeks, but I finally captured it on video.  It's so weird to see him walking around like a little drunken man.  He sure has made us proud.  



 

 Aiden - don't ever stop working hard for what you want.  This is only the beginning of what the world has to offer. 

5.08.2013

wordless wednesday...only i have some words

There's been an article circulating lately written by a father who is expecting twins and who is not at all thrilled about it.  It's caused a shit storm in the world of social media, to say the least.  Here is the article.

I could sit here all day long and tell you all about how this article infuriated me.  About how he is selfish and immature.  And how I, too, had some of the same feelings but didn't feel the need to publish them in such a negative way.  Blah, blah, blah.

But instead, I will shut my mouth and show you this. 




Because twins are awesome.  And that is a fact.

5.02.2013

march for babies

Our March of Dimes walk was this past Sunday.  I am so proud and thrilled to announce that we surpassed our fundraising goal by $2,000!  Thanks to all our team members who raised funds & donated, and also to all those who couldn't be with us but wanted to show their support by making their own donations.  You know what this means?  Next year I am doubling our fundraising goal and we have some ideas already brewing about a fundraising event that we'd like to have.  If you haven't donated to Team Raiden and think it's too late, it's not.  The MOD will actually be accepting donations for this year's walk until June 30th.  Just click on the button to your right!

Sunday was gorgeous.  We couldn't have asked for better weather.  This year we walked out of Eisenhower Park instead of Manhattan.  This was way more convenient in terms of parking and what not.  And the park was really nice to walk through.  We had a team of 40 people with us, plus kids. 

After the walk we invited everyone to our place for some lunch and drinks.  It was a long day but I think everyone enjoyed themselves.  Babies included.  I was kind of sad when the day was over.  I think the March for Babies will always be a big deal for me.  We planned and planned for this day, this day to celebrate and show our appreciation for the lives of our children, and then it was gone.  But at least we get to do it again next year.

Thanks everyone for supporting us, donating to our team, walking with us, and loving us.  It means the world to us and that much more. 

A special thank you to WeBleedBlue.com for donating our t-shirts this year!  They came out wonderful.

And thank you to Ag, Kristy & Adam for taking photos.  Here are some of them, though there are so many more!





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