I can't believe it is June and other things I am having difficulty comprehending...
I am planning two birthday celebrations for our little man. Having a little one turn one year old is very special for any family, but it is particularly significant for us and Ethan. According to the medical literature about PBDs, "children who survive the first year and who have a non-progressive course have a 77% probability of reaching school age (Gene Reviews)." So, this birthday is a BIG deal to us! We are going to have our family birthday party on Saturday, July 23rd and then we are having an "open house" at our church on Sunday, July 24th for family and friends.
I've been thinking a lot lately about all the things aren't like they "should be." I can't help but think of all the firsts that Ethan hasn't reached yet. He isn't crawling, he doesn't have any teeth, he hasn't taken his first steps, he is behind in almost everything, etc. But I know that we have so much to be thankful for - Ethan is very healthy, all things considered. He is rolling like crazy, is sitting by himself (he doesn't get into that position by himself, but once you put him in that position he can sit by himself for a while - he still tumbles so we stay close by to catch or place a pillow behind to soften the fall), and is typically a very happy baby (except when he gets tired or we try to put his glasses on).
As I think about Ethan being 10 months old and the one year mark quickly approaching, I can't help but think of all of the friends I have made through the PBD parent support group that are no longer able to hold thier precious little ones. My heart breaks for them and in the back of my mind I must admit I can't stop wondering when will it be our turn....
I also find it strange that the people who I now seem to have the most in common with are people that I have known for less than a year.... When I was pregnant, I began to understand the universal connection that all pregnant women and women who are mothers (even if their "baby" is all grown up) share. Now, as a mom of a child with special needs, it seems like we have a similar bond. I am so thankful that I have been able to become a part of the Global Foundation for Peroxisomal Disorders. I am looking forward to this summer's conference and meeting over 20 other families that know what it is like to have a child with PBD. We have families from the U.S., Canada and even one family from Australia attending the conference!
- Pray that Ethan will continue to grow, develop and reach important milestones (even if he has his own timing for these).
- Pray for all families impacted by PBDs. Pray for the Lord's love and comfort to wrap around those families whose little ones are in Heaven. Pray for wisdom and guidance for those families who are struggling with decisions about if/when/how to add to their family in light of this diagnosis.
- Pray for the Lord's healing for all the children impacted by PBDs. I know that even if they are not healed here on earth that Jesus is the Great Physician and they will be eternally healed in His presence.
- I also believe the Lord often works through medicine and technology - please pray for the doctors and researchers studying PBDs. Pray for treatments that will improve the quality of life for those impacted and for an eventual cure to these nasty disorders.
- Pray for the success of this summer's conference and that all families that want to attend will be able to do so. Pray that fundraising efforts will be fruitful and that attending this conference will not be a financial burden on families. Praise report - the DSCC is going to pay for our registration fee for the conference and our four night hotel stay in Omaha. So, we are now just looking for funding for our transportation costs.