Tuesday, June 26, 2012

Magnification

Over these past few weeks, I've come to realize that raising a special needs child means magnification.  In every sense of the word.  Highs are higher, and lows are lower.  I had been thinking that it was a roller coaster, but now I don't think that quite fits the bill.  Although roller coasters have twists and turns, and ups and downs, they do not magnify the experience.  They are what they are.

I've had a rough couple of weeks.  When we got back from vacation, I talked a big talk about not monitoring calories, about not watching what Ronan ate.  Results?  No weight gain that week.  We basically wavered right around 16 pounds for nearly a month.  This made me feel terrible, like I had put my needs ahead of my little boy.  That I needed a break more than he needed to gain weight and get healthier.

Ronan gets down to studying
Paul and I had noticed over the last month or so that Ronan was occasionally crossing his eyes.  I emailed our pediatric ophthalmologist, Dr. D, who said we should come in.  I honestly dreaded this appointment more than most others.  All I wanted was something my little boy could fall back on.  Unfortunately, Dr. D found that Ronan's vision has gotten worse.  His colobomas likely have more of a pass/fail affect on his vision, in that they either completely affect his vision or they do not.  After finding that they do not completely affect his vision, that sense was my fall back.  I always felt, well if something happens where his hearing isn't correctable, at least he could read lips.  If we couldn't get a cochlear implant for Ronan, at least he could learn sign language.  But I was/am petrified about how to raise a child who does not have those options.

Thankfully, his vision is correctable.  We will be getting glasses shortly.  The correction is strong enough that he is likely uncomfortable without glasses.  This was evident when we went to try on his glasses before they were sealed.  Ronan will not wear sunglasses, but he did not touch these glasses.  He seemed to know that wearing them made things better.  They made him feel better.

Back to the original intent of this post...  While needing glasses was seemingly not a big deal, I was devastated.  I cried for a couple days, I just couldn't shake it.  Anyone else might have been somewhat upset.  Why is it a big deal to just slap a pair of glasses on, and go about your businesses?  But for Ronan, this was just one more thing.  One more difference, one more part of his life we would have to monitor.  A rational person would have thought, no big deal.  It's just glasses.

But for a life with a special needs child, highs are higher and lows are lower.  And this low, was a big low.


With all lows though, there are highs that eventually come along.  For us, that was Ronan and solid food.  Since I had been feeling so bad about his weight gain, I set up an appointment with the RD at the hospital where we had Ronan.  Results?  Ronan gained seven ounces in five days!  His favorite food will probably be butter, but he is gaining!!  Again, I cried when we realized how much weight he gained.  And any other person might not have even noticed those extra ounces, but we did. Ronan has been a rock star with solid food.  He literally laughs when we feed him this whole milk yogurt.  He absolutely loves solids, so another score for Ronan. 

A life without passion is no life at all

I've often wondered if this experience and journey with Ronan has made me more passionate.  But I don't think that I somehow have more passion for my child than anyone else.  Although I may celebrate Ronan gaining an ounce while another mom may not bat an eye, I don't think this qualifies as some additional passion for my child above and beyond.  I simply think it all evens out. I would not trade this experience for anything.  I love this little guy so much, and I am so lucky that I get to be his mommy.  I feel privileged that I get to help and guide him through life, with all its ups and downs. 

Sunday, June 17, 2012

Happy Father's Day!




One of my first father's day gifts
Happy Father's Day to all those dads and dads-to-be!  And happy father's day to all the dads in my life.  I think about my dad every day, but I especially missed him today.  There are so many things I want to share with him.  I know that he is keeping a special eye on my little boy.  I can pick out little features of Ronan that remind me of many different members of our families, but I especially see my dad in Ronan.  The color and wave of his hair, the way he bites his lip are both reminiscent of my father.  I can't wait to keep getting to know Ronan and see his personality blossom. 

On this day, I thought about one of my first father's day memories when I was very little.  I remember crying that day, because my brother was down in the basement making something for my dad.  I wasn't allowed to use the tools, and I really wanted to make something special for my dad.  I remember my dad hugging me, and telling me he would help me make a special gift.  He opened a can of soup, poured it out, and washed the can.  Then he had me pick out a piece of construction paper, and he cut it to fit the can.  He asked me to decorate it for him.  I was still a little disappointed I wasn't allowed to use tools, but it seemed to fulfill my desire to make something for my dad.  I also remember being very angry that he was going to know what the gift was, and he insisted he would still be surprised when he got the gift.  Many, many years later when I was in college, I stopped by my dad's office and he was still using that pencil holder.  When he passed away, this was one thing that I asked to keep.  I gave it to Paul for his first father's day last year.  I think my dad would have appreciated that gift.

Ronan's first father's day gift
Today I also thought about what a wonderful father my husband has grown to be.  I knew when we decided to get married, I was marrying a fantastic man.  I knew he would be great with kids too.  But I had no idea how amazing he would be, and how much he would rise to the occasion of having a special needs baby.  The lack of sleep and stress of a baby is enough to strain even the best of marriages, but add in open heart surgery, difficult appointment after difficult appointment, and all the various doctors and therapists and you have a recipe for a breakdown in a marriage.  I can honestly say that I have never felt a lack of support, and more importantly, I have never felt completely alone.  I have always felt that I have had Paul there for me, and I hope that he feels the same way about me.

Finger paining (that's purple paint!)
I already think that Ronan has a piece of Paul's sense of humor.  I love watching the two of them together.  Today, we had Ronan in his bouncer.  So far Ronan has had no idea what he is supposed to do in it.  He just kind of sits in it, and stares at us.  Paul spent about 20 minutes jumping and bouncing around, trying to get Ronan to start bouncing.  What did Ronan do?  Just laugh at his dad the entire time.
Wearing his Georgia Tech gear
I'd also like to mention another dad in my life, my father-in-law Norman.  As I have become more integrated into several special needs support groups, I have come to realize how lucky we are to have such a great support system.  Not everyone has both families so involved and supportive with their children's care.  Also, there is something very special about watching Norman with Ronan.  It makes me think about Paul growing up, and think about how he became the wonderful dad and husband that he is today.  I have no doubt that some of that sense of humor that Ronan has originated with Norman.  Plus, Norman brought me into a special club, the "outlaws".  I wish I could say more, but the first rule about the outlaws is that you can't talk about the outlaws.  And you outlaws know what I'm talking about :)

Happy Father's Day.  Love to all the dads out there, whether here or looking down on us. 


P.S.  Here's a video of Ronan at the aquarium.  Paul found this dolphin toy that Ronan thought was hilarious. 

Saturday, June 9, 2012

The Many Sides of a Vacation

This past week, Paul, Ronan, and myself spent seven wonderful days in Hawaii with my family.  We were there over my dad's birthday, which made the vacation more special.  He loved Hawaii, and he would have enjoyed this trip.  I wish he would have been there!

This vacation was more than just a typical vacation, though, for us.  This was the longest time we have not taken Ronan to an appointment.  At his next appointment on Monday, he will have gone 10 days.  10 whole days!  The longest we have gone without an appointment prior to this was 5 days.  There was a night when I thought we might have to break our vacation and see a doctor because of some congestion, but we were able to keep it under control.  10 days without seeing a doctor.  Without meeting with a therapist.  No consultations, no opinions, no referrals.  But Paul and I didn't stop there :).  We didn't count his calories.  We didn't record his food intake.  We didn't weigh Ronan.  I didn't call our insurance company, I didn't call a doctor's office.  I didn't do any scheduling.  I didn't submit any insurance claims.  Amazingly, I didn't do any research.  I'm sure all my various medical sites are wondering why there was such a drop in their page views.  Paul and I fed him when he was hungry, let him sleep when he wanted to without keeping him on a schedule (schedules are important when you have so many appointments!).  In short, we just enjoyed our little boy.  It was amazing.


When we came home last night, I actually got a little teary eyed thinking about going back to our schedule.  I think that everything we are doing is helping Ronan, but it was sure nice to just take a break for a few days. 

A few highlights...  Ronan loved the sand.  He could not stop raking his hands thru it, and grabbing it.  I'm thinking that he might get a sandbox for his birthday :).  We also took Ronan to the aquarium.  That little boy loves fish.  It was adorable.  Ronan was not a fan of the water, though.  I'm sure in a couple of years, given his parents, we won't be able to get him out of the water. 

I have one really adorable clip to share with you.  When we went to the aquarium, we stopped in the gift shop.  Paul found this little dolphin toy that Ronan thought was hilarious.  Here they are playing!