i won't give up

I've heard this song many times before.  Kind of liked it.  Liked it a bit more when I heard this cover of it.

Then something happened.

I was sitting on my living room floor after feeding the boys their morning bottle.  I had the tv set to MTV and this video came on.  (Yes, MTV does still play videos but I guess only at the crack of dawn).  I sat there listening to the lyrics, and holding my baby boy Ryan.  And I started bawling, uncontrollably.  Yikers.  Seriously too early for this. 

Anyway, the next time I heard it, I was in the car on the way to a doctor's appointment with Aiden.  Again, bawling uncontrollably. 

I was shocked that I reacted this way to this song.  Most people who hear it picture a guy and a girl...a love story.  Some struggles sprinkled in there.  And at least one of them not willing to let go without a fight.  

To me, though, this song epitomizes what it means to be a parent.  To be a parent of a special needs child.  We've had our struggles and are dealing with some right now.  And although we are lucky enough to have mostly normal and happy days, I know that there is more pain awaiting us in the future.  But as a parent, it is my job to take that pain and digest it.  Make it so that my kids don't view it as such.  Make it so that they have the will and strength to get through it, no matter what "it" is.  And if it so happens that we don't get the desired outcome, it is my job to let them know it's okay.

Sometimes this is hard to do.  Especially when you look around and realize that your life is different.  But then I look at my boys, and I remember that I wouldn't want it any other way.  And my vow to them, is that I won't give up.  No matter what it takes.  No matter how hard it is.  And I know their daddy feels the same. 

what's today?

Wednesday...wordless Wednesday I guess.  Only I do have some words.  The boys haven't been sleeping great lately.  For the past week they've been impossible to get down for the night and waking multiples times during the night.  Needless to say, our entire household is a bit sleep deprived.  I did figure out that between the two of them, there are at least 5 new teeth sprouting.  Yikes!  Here's to hoping that we gets past this little hiccup soon so that we can all enjoy the upcoming holiday as the loving family that we are :)

I hope to have more to say one day soon, but for now I leave you with this photo of Ryan sporting his new glasses.  This kid is a heart breaker for sure.


five for friday / the boys

these photos speak for themselves

2.   Aiden had a hearing test this week.  He presented with normal hearing to mild hearing loss.  You can imagine our excitement, as his last few tests put him at mild to moderate hearing loss.

3.  We took the kids to a pediatric opthamologist two weeks ago as a follow up to their ROP diagnosis/surgery when they were in the NICU.  Aiden was cleared for the next year.  His eyes are fine.  Ryan, on the other hand, needs glasses.  He is extremely nearsighted in his left eye, and in an effort to make sure that he doesn't ignore that eye he will wear glasses every day.  We pick them up tomorrow.  Stay tuned for photos!

4.  Aiden has really taken off with his gross motor skills lately.  He's crawling all over the place and pulling up to stand on everything.  His PT has been working with him on climbing the stairs, so that is his favorite thing right now.  We finally put up a baby gate to keep him safe.  He so badly wants to walk and gets frustrated that he can't.  He crawls into your lap when you're sitting on the floor.  And he loves, I mean LOVES, attention.  It's all about him, ya know.

5.  Ryan is making strides of his own.  He is still working on sitting up unassisted, and he is getting better every day.  His posture and trunk strength are gradually improving and he is able to bear weight on his hands a little longer now.  He says mama, nana, dada, and a million other "words" and he has learned (from Aiden) how to shake his head no.  Such a smarty.  His right arm and hand are loosening up and he is getting better at opening his right fist in order to use his hand.  We recently switched PTs and I'm so glad we did because it really made a difference.

Ta ta for now!  



As a preemie mom, these three letters scare the ish out of me.  As someone who isn't, you may have never even heard of RSV.

RSV is a virus, that for an adult or an older, healthy child, will cause symptoms of the common cold.  But for a preemie who spent months on oxygen support, RSV can mean hospitalization, and in some rare and extreme cases, death. 

RSV season is roughly October through April, though it changes each year.  The CDC website is the most reliable source to find out when RSV hits your city each year.  In our case, RSV season started as of November 1st.  Last year when we came home from the NICU, we were in the thick of RSV season.  We were basically under house arrest, with very few visitors allowed at our home.  We only went out to doctor's appointments and quick walks around the neighborhood, where there were little or no people.  As an added precaution, the boys received a shot once a month, called Synagis.  Most people think this is a vaccine, but really it is a booster shot that must be administered once a month throughout the season.  These shots are extremely expensive, around $1200 per shot, per month, per boy.  Insurance companies usually cover Synagis, but they have very specific criteria which baby must meet in order to be approved. 

Since A&R were fresh out of the hospital last year, they were approved with no problem at all.  This year was different, though.  When October rolled around, our pediatrician began the paperwork to get the boys approved for Synagis.  A few weeks passed and we got two denial letters in the mail.  I was completely devastated and afraid for my babies.  This meant that not only do we have to remain on lock down at home, but we still have to worry about RSV in the event that they somehow come into contact with it.  (If you're wondering why we're locking down again, it's because it is recommended that extra precautions are taken for the first two years of a premature child's life, who is considered high risk).  Remember, although we can do our best to limit supermarket trips and get togethers with the boys, they still receive therapy almost daily.  And in most cases their therapists are working with other children all day long.  Germs can be carried this way, and we would have no way of knowing.  

My fear kicked my momma bear instincts into high gear, and I asked our pediatrician to appeal the denial.  I called our insurance company and got detailed instructions on how to submit an appeal, and relayed those instructions to our pediatrician.  Another few weeks passed by, and two more letters were delivered to our house.  This time, though, they were approval letters.  Whew.  I can now breathe again. 

Tomorrow A&R will get their first round of Synagis along with their second flu shot, and we will be able to relax a little.  We will still be strict with hand washing and visitors, but we will be able to feel somewhat normal and not completely on edge all the time.  While Synagis can aid in protecting a child from RSV, it is not a guarantee and so we still have to be really careful.


self portrait

I was lucky to enough to get a really nice camera for my birthday this past May, and I really haven't had much time to really learn how to use it.  It's not your typical point and shoot camera.  It has a lot of buttons and settings and acronyms that I know nothing about.  It frustrates me because most of the photos I take of the boys are with my iPhone.  Now that is completely unacceptable.  I mean Instagram is cool and all, but I wanted a nice camera for a reason.  Therefore, over the next few months, I'm going to dedicate a few nights a week to really learn how to use this camera.  And in a effort to hold myself accountable, I hereby declare Tuesdays "photog days".  I'll post a photo or two that I've taken that week with my camera.  I figure it will force me to actually use it.  So here is my first photo:  a holiday self-portrait, if you will.


it's beginning to look a lot like christmas

This weekend was spent getting the house holiday ready.  We dug up our old decorations, and anxiously awaited the arrival of new ones that were recently ordered online.  We bundled up the kids (yeah right, it was like 60 degrees yesterday) and packed into the car to pick out our tree.  We opted for a smaller one this year, figuring we might have an easier time keeping it from falling over on A&R, especially A since he is mobile now and into everything!  We still aren't quite done as I'm not happy with how the front of the house looks yet, but slowly it's all coming together.  

I remember decorating the house last year for Christmas.  It was so lonely and cold.  The kids were in the hospital and I was set on getting a tree anyway, because I wanted our house to always celebrate the holidays.  Even though the boys weren't home to see it, somehow I felt that having a tree would bring the holiday spirit to us, where ever that may be.  

This year is different.  This year is happy.  It is warm and comfortable, and we get to sit on the couch and enjoy snacks and movies with our littles.  We get to hear their grunts and squeals, as they figure out the inner workings of their voices.  We get to clean up their puke and diaper blowouts (because yes, amidst all the holiday prep, that happened last night).  And we get to put them to bed, knowing that they are safe and warm in their own room.  And just a few steps away from us.  But not before I dress them up and force them to smile for my camera. Haha.

Here are some images from our homemade holiday photo shoot.  Enjoy and be merry!


 Disclaimer:  I'm a newb at this photography thing, so any constructive criticism you can offer is welcome!

Related Posts Plugin for WordPress, Blogger...