Michaela

15 Jul

Over the weekend, I had the opportunity to be in the presence of 35 miracles! 35 individuals who were born with Holoprosencephaly. Each of these 35 had only a 3% chance of surviving to birth, and each has defied all odds and predictions by the medical community. I loved it when one of these miracles would reach out to me. Some would reach out with their hands and arms, others would reach out with their voices, and others had only the ability to reach out with their eyes. But, they all touched me! They touched a place deep within my heart, and that is where I get my strength and courage to continue on.

One in particular touched me deeply. 14 year-old Michaela didn’t speak, but she communicated her love. As she came to realize that our time together was coming to an end, Michaela began to cry. Not the type of crying that a small child does when he isn’t ready to leave the playground—instead, these were the tears of sadness. The tears of a young woman who understands that she will be leaving people who love her for who she is, and people she may never see again. Her tears were no different than my tears, as we both had the realization that we had experienced something special that we didn’t want to end. As I held her hand and stroked her hair, I savored the moment as I knew that I had been touched by a miracle.

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.

← Older Entries
Newer Entries →