I was recently invited to a Facebook group for people of my same faith that have special needs children and this morning someone from the group posted this picture. It is wonderful to feel connected through our different challenges. It is hard for me to reflect back on Maaike's first year of life. It was such an isolating time. But just before Maaike's first birthday we stumbled upon
Liam and Kody and realized that there was someone else out there like us. Liam's parents then opened us up to the rest of the Lymphatic Malformation community through their
foundation and a few Facebook groups. The feelings of connection, acceptance, and understanding have pushed the dark clouds of that first year far behind us.
I would however caution you to make sure you find a group that meets your needs. There are tons of groups, blogs, and websites out there. Each group has its own focus and personality and it needs to be a good match to your needs and personality or it could become more of a setback than a help. I hope coming here, to this blog, is a help for you. It is for me.
Where in cyber space do you find acceptance and peace?
When my daughter was first diagnosed with hearing loss I found a lot of support with the few ladies I met on an Ivillage.com board for parents of children with hearing loss. The discussion board was in transition and being combined with the general "special needs" board but there were a few of us there with kids with hearing loss. It was very helpful in part because it was moderated by a retired audiologist -- super helpful! Otherwise I found a lot of reassurance in one of our Early Intervention language therapists... she really took the time to help us to understand what we could do to give Allie the best chances at learning language -- and almost four years later and Allie doesn't stop talking! :)
ReplyDeleteI'm glad you're finding some community - it can be so isolating!
What an awesome audiologist! My dad happens to be an audiologist so I grew up in a world filled with those who had hearing loss. I have to agree that early intervention is a life saver! I don't know what we would have done without it.
DeleteI was excited to be introduced to your blog. You are inspiring. You say things that I think about all the time, but can't figure out how to say.
ReplyDeleteIn addition, I just recently found ccakids.com (Children Cranialfacial Association). They are also on facebook. I was introduced to it by a recently met co-worker and now friend who has a child with cranialfacial deformities. I loved when I found this group because I was able to find not only families with children with deformities but specifically Golden Har or Treacher Collins. Nice to see that we are not alone. Being able to share eachothers frustrations, experiences and successes.
In fact, I've been meaning to tell you about it. I'm not sure if what Maaike has is considered cranialfacial (in my mind it does), but you should join the group. If anything, you would be able to reach out to families that are in the same situation as yours and you can inspire them as you have me.
Thank you Gabby! It is nice to know that something I have to say, while sitting in my kitchen in my PJs, speaks to you. Your comment inspired my next post as it sent me reflecting back on the words of other special needs moms that inspired and uplifted me.
DeleteI have no idea where cystic hygroma is as far as classification. It is a soft tissue issue that can cause bone deformation over time. I'll check it out!
My best support comes from a facebook group called Trisomy 18 Mommies. While I do find some from my faith based group (probably same one as yours), most of them are in a very different place than I am. The T18 Mommies are fighting the same battles for care and trying to find the same balance that I do. Because it is so rare for our babies to even live past the first month, it's hard to find people locally to connect to. These women have saved my sanity, and probably Aaron's life as they help me to recognize problems in time to reach out for help. Love your blog!
ReplyDeleteOne of my role models is a Trisomy 18 mom. I agree that we will have commonalities with all special needs parents, but there is nothing like finding another family with the same diagnosis who can help you through specifics of your child's condition. Thanks for stopping by!
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