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Five things from the HPE conference . . .

14 Jul

We just wrapped up the HPE Conference, and there’s so much to tell. I’ll share more in the coming days, but here’s a few things that are especially memorable to me:

1. Sammy has a twin, and his name is Andrew! Prior to the conference, I had never seen a picture of Andrew, so I had no idea that he was a Sammy Yammy impersonator! Steve and I were able to spend a little bit of time cuddling with him, and we both intend to visit Andrew in West Virginia for more one-on-one cuddle time with him. As soon as I have a photo of him, I’ll have to share it.

2. My van was used for transporting several of the families to and from the airport, and it gives me a warm feeling whenever I drive my van now knowing that such amazing families and living miracles have had a presence there.

3. Gas prices need to come down so that I can hit the road and visit some of our families. With 43 families in attendance, it was difficult to spend much one-on-one time with anyone. Of course, two moms and I did stand outside our hotel rooms talking until 3am on Saturday morning, and that seemed to be the best way to catch me.

4. One of the siblings gave me a beaded bracelet with the word “HOPE”, and she told me how much she missed Sammy. Another sibling told me that Sammy meant a lot to her.

5. I’m exhausted, but fulfilled.

Do you take tomorrow for granted?

26 Jun

Do you take tomorrow for granted? We live in a fast-paced society, and we all have moments where we are forced to schedule our lives weeks and months in advance. When we schedule the dentist appointment for 6 months from now or we book a cruise nearly a year in advance, aren’t we taking it for granted that we will be here when that date arrives? Think of how many people started their day on 9/11 not realizing that their life would forever change in an instant. As they slipped out of bed that morning, they had no idea that the world they knew would come crashing down around them.

Even when we have a loved one with a terminal illness or a child such as Sammy, we know that dreaded day will eventually come–probably sooner rather than later. From that perspective, we learn that time is so very precious, and we can’t take any time for granted.

This week, a family I care about is hurting from the heartache of their daughter’s passing with HPE. When I think of their daughter from my perspective, I can make a list of so many things that she did in her short life and the experiences she had. Her parents didn’t sit around feeling sorry for themselves; instead, they celebrated the blessing of her life knowing that time is precious.

Little did I realize that Steve and I have been modeling our grief for them in preparation of their own grieving. This family has been there as a witness to our darkest hour of mourning, the most heartbreaking day of our life, and our joyous celebration even in the midst of our sadness.

In our HPE world, we often say that we’re on a journey together. I like to think that we each carry a candle which lights our path and makes the journey a little easier to navigate; but, when our child passes away, that candle is extinguished. That’s when we look up to seek others who are ahead of us in our journey, and if we reach out to them, the light from their candle can be shared with us as we learn to navigate a new portion of the journey. The unexpected part of the journey is that we discover others who are willing to walk side-by-side with us until we find our own way, and once that happens, we are able to share our light with others.

Adrenaline Junkie?

22 Jun

As the HPE conference draws near, a lot of thoughts begin to come to the surface. I’m so excited to see the HPE families; some of them I have already met, so it will be a joyous reunion. Others, I will be meeting for the very first time–even though I feel that I already know them so well. There’s a special bond I feel with these families because they truly know what it’s like to walk in my shoes. They speak my language, and they know where I’ve been because they have been there too.

Of all of the children I’ve known with HPE, there is one particular child who was the most like Sammy in nearly every way–almost constant seizures, medically-fragile and very complex. When I would reach the end of my rope and had alleviated all of my other resources, his mom is the one I would seek. She had a few years of experience on me in the complexity department, and I could ask her the difficult questions that no other parent or doctor could answer for me. Whether she knew it or not, I seemed to reach out to her when I was in my darkest hours and most fearful of losing Sammy. Her son passed away three years ago at 4 years of age, and his death was so very upsetting to me.

After Sammy passed away, she made a comment that sticks with me. She said that following her son’s funeral, after everyone had gone home, she remembers being completely exhausted. Four years of constant stress, worry, and caregiving took every bit of physical energy she had. In those four years, there wasn’t time to rest. When others routinely asked her how she did it, she always said that her son came with adrenaline. I can almost picture the scene–“Here’s your new baby along with a four year supply of extra adrenaline because you’re gonna need it!”

Last week as I talked with our grief counselor, I realized that my four year supply of adrenaline gave me the physical energy to keep going every day in order to keep up with Sammy. As I thought about it, I began to see how Steve and I learned to thrive under pressure. While in crisis mode, we were on our game. As I prepare for this HPE conference, I can sense that same adrenaline pushing me and enabling me to complete tasks that otherwise wouldn’t be possible. That’s where I’m struggling–I’m a planner and a list maker at heart; it’s not in my nature to “fly by the seat of my pants”, but that seems to be my middle name these days. I’m temporarily stuck in the “Tyrany of the Urgent”, and it’s those urgent matters that are propelling me forward. The adrenaline rush comes when the urgency strikes, but have I become an “adrenaline junkie” able to function only when my back is against the wall? If so, I’m in serious trouble because it’s not healthy!

The good news is that after the conference, I will be able to take a deep breath and slow down a little. The best news is that my way of coping is to turn to Jesus who said, “Come to me all you who are weary and burdened, and I will give you rest.” Sweet rest!

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