A new focus

I feel like the purpose of this blog is beginning to shift. One of its initial purposes was to keep family and friends updated on Merideth’s condition during pregnancy and after she was born. Obviously, my updates have not been as frequent since then, but I plan to still communicate how we are doing. I especially appreciate the comments—they really give me a boost, and I hope they keep coming.

On the other hand, I feel like this blog can reach out to others who have children diagnosed with a congenital heart defect. I have found great comfort being able to share with other families who have a specific connection to our situation. This week I personally met Sue, whose baby Sam is due next month. We met at the park so our kids could play, and four + hours later we said goodbye, even though there was still more to talk about. Sharing a common challenge has bonded us instantly, and we were able to share fears, heartaches and aspects of faith, even things we have not expressed to anyone else. I think Sue was looking for help knowing what to expect in the next few weeks, but she helped me more by just giving me a chance to talk.

This week I also found another heart family who is family. Aaron’s grandfather is a great uncle to Heather, whom I have never met. She sent us a gift and note and said that her baby was born last year with hypoplastic right heart syndrome. I don’t know specifics about this condition, but I can speculate that it means the right ventricle is underdeveloped and has some of the same problems as Merideth, though perhaps not as severe, since there are only 2 surgeries (Glenn and Fontan) associated with this condition. Although I have begun to feel distant from the heart community in some respects because of the different path we have taken with Merideth, as I read their blog it was comforting to see their little Alyson doing well in her development. I was also uplifted by the positive attitude of their family. I was wistful, however, to see the sweet pictures of her two girls together because it is sad to think of Natalie missing out on the fun of having her little sister to grow up with.

The third thing this week that has been particularly helpful to me is reading a book a friend gave me, Joy Cometh in the Morning (Fran C. Hafen). The author shares her experience with the death of her infant son and her journey of healing. I don’t feel like my grief has been as intense as what she shares, but I am grateful for her expressing her feelings so openly. I have enjoyed reading it and invite you to share other resources with our readers that you have found helpful.

These various encounters during the week have reminded me that my blog is entering another dimension: to connect with those who are parents of children who have died. And so, I will try to be a little more open with sharing our daily life and coping with death for the sake of those families and for myself as a means of expressing and dealing with grief. I have appreciated that many of the resources I have read remind that the grieving process is a process and should not be rushed, that family and friends should not to be impatient and think that those affected should be “over it” in a certain time frame. Since this blog is getting so lengthy I will share more of my feelings another time, but I personally feel like we are doing fine right now with normal (as in typical) reactions. There are ups and downs, mostly on my part, but nothing that is extreme.

As I was reflecting last night about what to write in my blog, words from the hymn “Lord, I Would Follow Thee” came into my mind:

Savior, may I learn to love thee, Walk the path that thou hast shown,
Pause to help and lift another, Finding strength beyond my own.

Who am I to judge another When I walk imperfectly?
In the quiet heart is hidden Sorrow that the eye can’t see.

I would be my brother’s keeper; I would learn the healer’s art.
To the wounded and the weary I would show a gentle heart.

Savior, may I love my brother As I know thou lovest me.
Find in thee my strength, my beacon, For they servant I would be.

Lord, I would follow thee

Even though dealing with death—whether death of a child or another loved one—is a challenge, I have often reflected that we are not the only ones who are experiencing heartache. I can think of many others I know who have their own sorrows, even ones that can’t be readily seen—losing a baby through miscarriage or not being able to have children, other physical challenges, struggles with testimony, or grief over the choices that loved ones make, are a few that come to my mind. But in sharing the burden of others as the song says, I think I can find comfort and find strength beyond my own. To summarize, then, I have been blessed this week to be a participant and recipient in “bear[ing] one another’s burdens,” “mourn[ing] with those that mourn” and “comfort[ing] those that stand in need of comfort,” and I hope that this blog can bless an additional audience of families who share the status in which we now find ourselves and that in the process I can “stand as [a witness] of God at all times and in all things, and in all places”(Mosiah 8-9).