Sometimes I think I want to try to advocate so much for individuals like Joey with Down syndrome that I think I fail to discuss some of the challenges. Some of the realities. Part of the reason is that I never, ever, ever want anyone to ever think for even a second that Joseph is somehow a "burden" to our family. The other part is that once we became members of the world of "special needs", "multiple handicaps" and "children's medical" we quickly learned that so many children have far worse health concerns than our little guy does. For those reasons, I just don't want to complain. Another reason is that for so long we were told that Joey would never even be here. He would never make it. He is the boy who was given a 2% chance of surviving the pregnancy. For these reasons and more that I learn every day-- I just don't like to complain.
That being said, there are days of fear, frustration and tears. Days of holding on so tightly just so it doesn't all fall apart. Days of keeping so busy with insurance phone calls, therapy sessions and doctor appointments that there is barely a spare second to respond to an email, take a shower, make a family dinner or even just sit on the couch and breathe. Days of balancing the costs of some of these extra needs with the costs of sometimes needing to do something special or to splurge.
I read on another mom's blog about doing something special for another "special needs" mom for Mother's Day. Love That Max encouraged us to "pay it forward" in her pre-Mother's Day post. Using her inspiration, we packed up a giant box for little Oliver (who is Joey's age and is fighting cancer) and his mom to pay it forward to another "special needs" mama. Oliver, Olivia and Sarah are all little ones with DS who have cancer who are on our nightly prayer list. Maybe you can also add them to yours? They are all under 3-years-old. Can you even imagine? It hurts my heart.
This next video also hurts my heart, but uplifts it in an amazing way.
There is something about almost losing or having lost a child that makes you appreciate every single day. Especially the hard days. It is a reminder of how quickly life passes. How the challenges are what make this life so incredible and so precious.
Lately I have been trying to take Joey out in the jogging stroller. A friend suggested that it might be neat for him to feel the wind and that he might enjoy it. I used to do it with Tommy all the time, but have just recently started taking Joey. And he does love it. It is a beautiful time for just the two of us. My heart breaks for Ben's mama and the loss she experienced. Her compassion, even in her pain, for other families who face extra struggles made me weep.My heart also soars from her example and her compassion for all the moms who face a little extra every day.
I hope your heart will soar. Is your mountain waiting?
That being said, there are days of fear, frustration and tears. Days of holding on so tightly just so it doesn't all fall apart. Days of keeping so busy with insurance phone calls, therapy sessions and doctor appointments that there is barely a spare second to respond to an email, take a shower, make a family dinner or even just sit on the couch and breathe. Days of balancing the costs of some of these extra needs with the costs of sometimes needing to do something special or to splurge.
I read on another mom's blog about doing something special for another "special needs" mom for Mother's Day. Love That Max encouraged us to "pay it forward" in her pre-Mother's Day post. Using her inspiration, we packed up a giant box for little Oliver (who is Joey's age and is fighting cancer) and his mom to pay it forward to another "special needs" mama. Oliver, Olivia and Sarah are all little ones with DS who have cancer who are on our nightly prayer list. Maybe you can also add them to yours? They are all under 3-years-old. Can you even imagine? It hurts my heart.
This next video also hurts my heart, but uplifts it in an amazing way.
There is something about almost losing or having lost a child that makes you appreciate every single day. Especially the hard days. It is a reminder of how quickly life passes. How the challenges are what make this life so incredible and so precious.
Lately I have been trying to take Joey out in the jogging stroller. A friend suggested that it might be neat for him to feel the wind and that he might enjoy it. I used to do it with Tommy all the time, but have just recently started taking Joey. And he does love it. It is a beautiful time for just the two of us. My heart breaks for Ben's mama and the loss she experienced. Her compassion, even in her pain, for other families who face extra struggles made me weep.My heart also soars from her example and her compassion for all the moms who face a little extra every day.
I hope your heart will soar. Is your mountain waiting?
Posts
Tears. Beautiful.
ReplyDelete