Charity begins at home… but not the giving to ones self, the giving to others…We learned long ago just how true it is that “it takes a village” and we try our best to make sure that we give back to the village that has given to us so much over the last 12 years. By village I mean world, not just my neighborhood, or Toms River, or NJ… I try and think bigger.. (really? 10 kids, 9 dogs? She thinks bigger? Nahhhhhhh!)

                Our family, at Christmas time, gives everything a parent needs, from gifts, to wrapping paper, heck, even tape if they need it, to local families struggling with a sick child. We know full well the pressure of the holidays mounted on top of the stresses of having a sick child. Kylie with toys to be donated to JSUMC

Sick kids are exorbitantly expensive. We know. We had one. Still have one, but we have been enjoying a few years of minimal medical chaos. Hundreds of thousands of dollars, thankfully covered by insurance (over a million in our case) is a blessing, but there’s always the co-insurance, the deductibles. If your lucky, just $20 bucks a pop co-pay per doctors appointment. ($40 for a specialist, which is all we ever have) Sometimes 3 times a day. $1200 a month for just one, tier three, uncovered medication. Forget the other 15 at $20 per refill monthly. Durable goods NOT covered (including but not limited to the $2300 pump and $200 a month box of bags that delivered nutrition via a surgically implanted tube into her stomach). Can’t forget the $200 A CAN, not covered, special pre-digested formula. How about gas for a 15 passenger van, round trip, 200 miles A DAY for 6 months, then every other day for another 6 months. Even the nasty hospital cafeteria food you end up not eating is expensive. It all adds up. Not to mention the fact your scared and your heart is breaking because your child is suffering and there are probably siblings at home, just as scared and worried too.

Grateful Giving (4)

We’ve been there, done that, bought that tee shirt. And its not a comfy one. Its even more uncomfortable than those “athletic fit” shirts that you break out in a sweat just THINING about squeezing into.

We give, because what we get back is indescribable. We give, because we know how it feels to be blessed by friends and strangers alike. We give, because what we get back, the joy, the grace, the love, they are what really make Christmas, merry.

We give so parents can have ONE LESS THING on their mind.

So a sibling, who’s brother or sister is critically ill, if not dying, can have a few laughs and get some goodies.

So a child, who has more scars from cut downs and ports than friends on Facebook and counts their red cells and platelets instead of pimples and Pokemon cards, can forget, even if just for a moment, that every day for them is a battle. some Grateful Giving stuff in our garage, ready to be given out!

       We donate directly to families. Some we know from the neighborhood, some are referred thru schools, social workers or doctors offices. We donate to the pediatric floors of local hospitals. We bring “care packages” to kids on the bone marrow unit at the hospital in Long Island where our daughter had her stem cell transplant in 2005. But we also donate anonymously. We have been known to pull the good ole’ “ding-dong, ditch” as some families desperately need their privacy. Or we give our donations to a school official who makes the delivery for us. We know how embarrassing it can sometime feel to be dependent on the help of strangers. And its OK. We’ve been there. We understand.

Our personal journey with a sick child began on April 23, 1999 when our daughter Kylie Jae was born severely ill. It took over a year for her to be properly diagnosed with Diamond Blackfan Anemia. Dozens of surgeries, years of hospitalization and an experimental stem cell transplant over the last 12 years has really shaped us as a family, and since then, we have been teaching our children to give in gratitude for what they have been given, to bless others the way that they have been blessed and to share their love and compassion with those needing comfort and support.

Our kids have gotten their classrooms to run toy drives. They tell friends parents about what we do. This year, the ENTIRE 6 grade is running a drive. We get donations of left over toys from the Marty Lyons Foundation Wish Kids Christmas Party. We buy stuff ourselves. Whatever we need to do to make it happen.

You don’t have to do it on such a scale as large as we do (although we wish ours was larger) but you can do it on an individual basis. Ask around, look at local papers, talk to your schools social worker… find a family dealing with the devastation of a sick child, or other cause close to your heart, and sponsor them. Take your kids to local stores, tell them what you are doing. Ask if they are willing to make a donation. I promise you, you will get more cooperation than not. And it isn’t always toys. Gift cards are PERFECT! Amazon cards are great, especially for those persnickety teens. Grocery store cards are a godsend for parents and cards to a restaurants that offer delivery or take out is a blessing for a family with no time to even breathe.

There is never too much, or too little that you can do for a family in need to give them a little bit of hope, faith and joy especially at a time when, for them, those simple things seem so hard to come by.

Teach your kids that the feelings they get at Christmas, are abundantly more amazing than the things they get.

 

Advertisements