How lucky we are...

The Holoprosencephaly family is pretty small, although HPE is pretty common, the babies usually don't make it past birth. The parents of those that do and often those who are diagnosed in utero are pretty tight, online anyway, through a support group forum. Several of us are also active on Facebook where we can keep up with eachother and our kids constantly. I have over 50 HPE friends, but I know there are a little over 100. It's surprising how close you can get to people you've never met, I just want to know more about them, their kids, their experiences.

The kids are so stinker adorable! Many have the same traits, eyes closer together (combined with Microcephaly, making thir eyes look big and beautiful), low or no bridge on their nose, skin folds over the corners of their eyes, cleft lip, single central incisor... Most of them it's pretty easy to tell when you recognize the traits.

I don't know that I have ever looked at a special needs child and thought about how pretty they were until I had one of my own, now I can't get enough of them!

Many of the Cleft lip and palette kiddos don't get the repair surgery because often they have no airway through their nose (which Dylan had surgery for early on) and they breath through the cleft. Sometimes when they do have the surgery the kids end up having to get a trach. Unrepaired cleft lips are just not something you are used to seeing but through pictures I have come to just love these little kids' wide smiles!

That said, I was so sorry to hear that on Friday one of the HPE angels, Riley Michelle got her little tiny wings. Her mom was getting everyone up early to get ready for a craniofacial appointment and found that she had passed away in the night. It was very unexpected, no reason. Riley was 2, same as Dylan and as soon as I heard it brought tears to my eyes.

Whenever we loose an HPE baby the community becomes very active, reaching out, holding up, and it's been buzzing the last couple of days. I know it helps me to have eternal perspective, to know that these mothers who have lost their children will be reunited with them without skipping a beat. And to know that these children are heathy happy and perfect in every way. But... ouch. It still hurts, it stings, and I only casually know her mom. I feel so bad for her, I can't imagine.

I am so thankful to have Dylan and to be able to learn from her and have her make me stronger. I am so not done with Dylan and she's so not done with me!! Each day is a blessing. Rest in Peace sweet Riley and big hugs to your family until they see you again.

Riley Michelle