I think we've all heard the saying, "Friends are the family you choose for yourself." I will admit that I wish I would have met all these amazing people through different circumstances; but I can't even think of what this journey would be like without them. Since Ethan's diagnosis it has become harder and harder to be around friends and family with typically developing children. The friendship and sisterhood that I have with other mommies of extra special ones has been such a blessing to me. We are a family. Like any family we sometimes hurt each others feelings, we sure don't always get along or agree on things and sometimes we even "fight", but in the end we still care for each other so deeply that it aches. We laugh, cry, and pray for and with one another. We listen to complaints and share our frustrations with one another. We celebrate and we mourn together. Since most of us live in different states if not in other countries, we send virtual hugs across the miles and hate that we aren't closer.
I was talking with a new friend the other day and we were discussing that "almost everything we've learned about PBD we've learned from another parent." At least in our case it is so true! There is so little information about these disorders and while each child is unique and nothing works for every kids with PBD, there are so many valuable things that I've learned from the amazing moms in our group.
Ethan and I were at the health foods store today picking up his vitamins and one of the workers was asking the typical "toddler" questions, "does he talk yet?" etc. and I was being polite and said no, etc. Another lady walked up to me and asked, "does he have mito?" I looked at her and said no, and explained that he has PBD. She said, don't you get sick of the typical questions, "My son has Autism." We spent several minutes chatting, because she "got it." While her son is much "healthier" than Ethan, and is much older, he is 10 now, she was able to relate in may ways. Her son didn't start talking until he was 3, and still has many challenges and people just don't understand.
Perhaps it is wrong that I have distanced myself from so many people in the last year and a half, but for me, it is part of my coping and surviving. For me, being around other moms who have little ones that are "different" helps me to not focus so much on what Ethan "should" be doing. It is painful to be around children that are typically developing because all it does is remind me of what Ethan is missing out on. I hate that it is so hard for me to be happy around typically developing children, and I am trying to be happy for parents as their children meet important milestones, but with every celebration that they enjoy, I wonder "will Ethan ever get there?".
So, I try to protect myself. I don't want to have those thoughts consume me all the time. We stay home alot. At home, Ethan is just Ethan. He isn't being compared to other almost 20 month olds who are running, talking, eating on their own, etc. At home he can combat crawl around our living room and play with toys designed for kids much younger than him, and be happy.
My PBD (and other special needs) sisterhood is there when I have questions, concerns, want to rejoice or want to cry. While each of our experiences are uniquely our own there is something that connects us, a bond that is hard to explain, as we seek to be the best parents we can be to the children that the Lord has given us.
It was this sisterhood that I turned to this evening in frustration of the last couple of days. Ethan hasn't been eating well, isn't drinking much, and is pretty cranky. I am very thankful that I have these women in my life. Thank you for caring about me and Ethan, just as much as we care about you. Thank you for being our "friends" even if we have never met in person or have only done so a few times because of the many miles that are between us.
For those who aren't part of this "special needs family," please don't hate me. But I do ask for your patience. Please know that I do still care about you and think of you often, and that in many ways, "it's me, not you." LOL :) Thank you for your continued love, support and prayers. We are blessed to have so many wonderful people in our lives.
- Please pray that Ethan's appetite will return and that we will be able to get enough fluids in him to prevent dehydration.
- Please pray for all children and family impacted by PBD or other disorders/syndromes/and serious illnesses.
- Please pray that our society would learn to be more kind and understanding to children and adults that are not typically developing.