Monday, May 26, 2008

Reality Check......

Today is a day that we remember our loved ones who have passed on before us, as well as those that give their lives for our freedom.

This last week I have been given a few reality checks.

The first one came in the form of a close family friend who was killed by a roadside bomb while serving in Afghanistan. He wasn't supposed to be there, he had signed up for a second 6 months there. Then he wasn't supposed to be in the Humvee that day either, he went for another person. He left behind his beautiful wife and his beautiful sons. He was only a year older than I am. He was based out of Washington, and while his Mother and Father in law will be there for his memorial service next week, I will be taking care of his 9 year old step sister for the week that they are gone.

They were so worried to "burden" me, with another child, yet I am so honored that I can help ease their minds knowing that she will be taken care of. This is an amazing family, and I am sure my kids are going to be just ecstatic to have a playmate for a week.

The next reality check came in the form of a family who lives not far from us who just lost their 5 year old little girl who has Down syndrome, to Pulmonary Hypertension. Of course this hits home because of Rhett's diagnosis of PH. It's an ugly disease that takes away so many young lives. I know that Rhett has an incredible doctor for his cardiologist, but it also hits home when you learn that this little girl had the same cardiologist.

Then I was just at another friends blog, and saw a chest xray of her little girl. Rhett's heart is huge on his chest xray's in comparison to hers, and they are nearly the same age. I know that he has always had an enlarged heart, but seeing it in comparison to a "normal" heart is again another reality check.

I have been trying really hard not to be in a funk, I really have. I have tried to be positive, but I am scared. I am again getting the pre-surgery jitters. I know it's still three weeks away, but it's coming so fast, and I hate the anxiety of it all, especially given the bad news that we have seen the last week.

I know I need to be focusing on the positive, and I am trying to. I am loving Rhett, and the rest of my kids with all of my might. Every day. If it's one thing you learn when having a child who is medically fragile, or with special needs, its that you never take any breath, smile, tear, or giggle for granted.



Michelle said...

No doubt. Every day is a gift, even when it's not easy.

Enjoy the next few weeks as much as you can while you're home. You're all in our thoughts.

Kari said...

Everyone always says "think positive" I agree it is a good thing to focus on but Pam you have alot on your plate. I can't imagine how hard it must be for you to Always think positive. Especially when your informed and reading about others on a similar Journey and the outcome is so devastating. It's a whole lot easier to think positive when your swimming in Ignorant Bliss. (which you so are not)All you can do is your best to focus on the good. I highly doubt anyone expects you to be little miss sunshine though. I think your wonderful, loving and encouraging and if you need to vent your concerns I'm always here to listen.

Niksmom said...

Kari said it perfectly. Sending you hugs and good thoughts today. xo

Danielle said...

I have a very close friend who just lost her 15 year old daughter to PH as well. A beautiful and very talented young lady. When talking to her Mom she had so much gratitude for Dr Day, for prolonging her daughters life for another few years.

My friend is looking into starting a support group specifically for parents who have lost children to PH. I'm not sure who this young girl is that just passed away, but if they have a website or guestbook or something please post it so I may pass it on.

Reality checks aren't always a bad thing. It's always good to be reminded to appreciate things. Even those of us who don't really need the reminder.

Good luck with Rhett's next surgery.

Anonymous said...

Hugs and prayers to all of the families mentioned here. Life is so hard. It is even more heart breaking when it is hard for little children.

WheresMyAngels said...

Many prayers and hugs out to you. One of my good friends has a son with PH. He has coded many times and given only a few years to live...this was years ago. He is in his early 20's now and he is amazing. He has rough days but he also has great days and so far he has defied all the odds. There is hope, so never give up.