A Mother's Heart

I started this blog a little over a year ago...to keep family and friends updated...to chronicle all that we were going through...and to maybe...just maybe...help other parents going through the same thing. This is written through my point of view...not Hank's, not his Dad's...just mine. How I feel about Hank's journey...his illness...his surgeries...his recoveries...fundraising...all of it.

But lately, I haven't been able to write. Not finding the right time, or enough time, as the demands of three kids and all the school and extra-curricular activities are keeping me busy. At least, that is what I tell myself. But the truth of it is...I am burnt out. The last year of searching for treatment, fundraising, traveling to NYC three times, two surgeries, more fundraisers...it's taken it's toll. Emotionally, physically, mentally...worn out. It's like being the bride...planning your wedding for a year and a half...dress shopping, fittings, gift registry, bridal showers...and then the big day arrives, and it's wonderful and exhausting. And then the honeymoon and opening gifts. And then you get home and settle in, and think, "Now what?" I call it the "let down". You go, go, go...and then STOP!

But we can't stop. Hank has a progressive illness...and we need to stay diligent, watchful, and aware. And so we prepare to head back to NYC this summer...for a follow-up appointment and 3rd (minor) revision.

And we gear up for fundraising...one big one and a few small ones, before we go. And we continue to raise awareness...which is truly our passion. We want everyone to know what Parry Romberg Syndrome is. We want to take away the mystery...to find those researchers who will figure it all out.

In the meantime, we are so grateful to have Dr. John Siebert...the man who truly gave us hope through all of this. The man who made a huge difference in Hank's life. So although these times are tough, and we wish things were different...we truly are blessed to get Hank the help he needs!

Even so, it's been an exciting time for us as we have been pushing forward on Hank's Facebook group, "Helping Hands for Hank". In November, right before we left for New York for Hank's revision surgery, we did a "member drive" and pushed towards 500 members. We made it and then some!

Last month, Hank and I talked about how cool it would be to have 1,000 members in his group. It is a significant number, with less than 1,000 people worldwide (that we know of) who have Parry Romberg Syndrome...That would be one Facebook member for every one person suffering with Parry Romberg Syndrome... And so we did it...1,082 members as of today! Here's Hank thanking his members!

I know that sometimes Hank feels "different". That no one else at school really knows what he's been through. I wonder what he thinks when he looks in the mirror. And I worry. I worry that he will think less of himself. Or that he will be teased. And just when I really get myself worked up, he goes and does something that truly shocks or surprises me!

Like signing up for drama class after school. What? Join a class that will put on a special performance for the parents and school? So not only was Hank in his 3rd grade class play, but he also was in the "Academy of Arts" production. Doesn't sound like a kid with any issues, does it? Both plays were fantastic! Hank did such a great job! And both times I found myself in tears when he took a bow. The first play had a ton of kids in it and Hank had a bit part.

But the second performance...the one with his drama class...was so beautiful...Hank was confident, fervent, and beautiful. And not only did I tear up...(OK, make that cried...or really blubbered), but as the lights came on I saw many people drying their eyes. Not because of Hank per se, but because of the beautiful and powerful message. But for me...it was not only the message, but the realization that one year ago...I didn't think I would ever see him confident enough to stand on stage and put himself out there. I mean, he used to...before he got sick...but to see it again....truly priceless.

And if I look at this video he made...he's happy...he's funny and he's full of life! We've come a long way! Not done with it all...yet...but making great strides!

Looking back on the last month...Hank's little brother Charlie, turned six and had his first real "friends" birthday party! Hank was right there, helping with the games and of course, opening of the gifts. Easter, which all the kids truly enjoyed. Easter baskets, candy and gifts....getting dressed up for church...Easter egg hunts...and a family celebration at my sister Barbara's house. Having a spring break from school...hanging out with cousins, roller skating for the first time...lazy days...watching movies...playing games...all the things kids should do!

He continues to take karate and along with his little brother and Dad, he went to a weekend "karate camp" with his school, Moore's Karate. All three of them got their belt promotions: Charlie to a camo belt, Hank to a green belt and Daddy to black belt! Jeff is now considered a "Shifu". Thank goodness I don't take karate...can't imagine having to call him Shifu Gibbs! (makes me giggle just to say it) They have all worked so hard and this little bit of normalcy in our lives is a true gift. I couldn't be prouder of my "boys"!

Summer is fast approaching and we are winding down with school. This has been a really good year for Hank, despite the occasional bullying issues and hurtful things said and done at school. (Hank takes it so much better than I do) We were truly blessed to have Jerri Wood as Hank's 3rd grade teacher. The whole third grade teaching team is amazing and the three women involved have been kind and gracious and capable. I know Hank feels safe and cared about, and it has made a huge difference for him. Hank is so much happier this year for a variety of reasons...he has been through so much, and has come out of it a stronger and more confident person.

My heart still hurts for Hank. I wonder how next year will be. I worry about his self-esteem. I worry that the disease is still present, even though Dr. Siebert does not. (I am a worrier by nature). I look at our other children and think, "are they next?" We are in such a better place than last year, but I continue to have the tears at the back of my eyes, waiting to spill forward at any given time. And really, there is no basis for my feelings... Hank is good. Funny, smart, well-liked. Loves life, loves the outdoors...more energy than ever before. (He ran 3 miles in his school Jog-a-thon!) Strong, stoic, compassionate, helpful, caring, sweet... no neurological issues, no atrophy, growing taller and gaining weight.... so I must chalk this up to a Mother's heart. A heart that worries about all her kids, and wants them to be healthy and happy and full of love. So I will continue to worry, I'm sure...but their health, happiness and love seem to be doing quite well...