Today is Hank's birthday! Eight years old! Wow! Such a little kid still, yet he is an old soul. This has been quite a year...he has been through so much these past 8 months... and yet he remains just your average kid. (well, I think he is ABOVE average!)
Not sure what we will do today. It's supposed to be in the high 90's... Jeff suggested a Rivercats baseball game. I'm pushing for a day at the pool! ...Thankfully Aunt Barbara has invited Hank and the gang over to swim.
But regardless of what we do, I am very excited to celebrate with Hank and Lucy and Charlie! It will be mellow since we already had the big "friend party" but Jeff has the place decorated with banners and streamers...it looks like a party to me!
Four days until we get on a plane bound for New York. It's been a couple of stressful days. I am feeling very overwhelmed, which in turn paralyzes me and I get nothing done! So hard to plan and pack for 16 days...make sure the other kids' clothes are clean, their rooms are picked up, the guest room is ready, food stocked up...AND shop for Hank's birthday! (I didn't even mention cleaning...so not going to happen!) I think I just need to stop and smell the roses...! Which reminds me...
At mass on Sunday, our priest Fr. Soane, talked about thankfulness. And about how a woman parishioner asked him to say mass in thanksgiving for the positive things in her life. That even though things weren't great, she was thankful for what she has and those who are in her life. (OK, I don't remember the exact words, but this was the basic idea)
That hit me hard. I am grateful every day for my family...for these precious children I have been blessed with, my mom and sisters and for my husband who is our rock. But right now, I focus most of my time on Hank. Praying for him to get well. Praying for him to get through the surgery and recovery process. Hoping that this surgery will work. Asking God for the strength to keep my chin up and shoulder the responsibility of caring for this child. And asking for help to keep my heart intact, as I prepare to leave my littlest ones, Lucy and Charlie behind.
As I listened to the homily, I reflected on all that I have to be thankful for. And the biggest thing that hit me was the people who have rallied around us in our terrible time of need. The people who have agonized right along with us, who pray for Hank and keep us in their thoughts. Those who have offered kind words and comfort. Those who have poured their hearts into the fundraising and have helped us in so many ways. So even though this journey with Hank and Parry Romberg Syndrome is far from over, there is much to be thankful for.
I know it is said that God doesn't give us more than we can handle...and while I appreciate the vote of confidence...right now I wish God didn't think so much of us!
On October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.
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