We can do hard things

Some things are hard and some things are easy. One of the things we talk about in our family all of the time is our ability to do hard things. We have the ability, the faith and the support to try something new and scary. We may not succeed the very first time, but we can try again and again. We also talk a lot about not making others feel bad for thinking something is hard when we think it may be easy for us. Everyone has their own fears and stumbling blocks and we are all different. If we use a little compassion in dealing with others and instead focus on helping them do hard things, everyone feels better about themselves.
   A few months ago Meg developed a fear of dogs. Not just a mild fear, as in not wanting to pet them, but an all out, cross the street, stay far far away fear. They scared her to her toes. She was knocked down by a bulldog and after that, she wanted nothing to do with any kind of dog at all. The neighbors barking dogs in their yard scared her when she was outside, even though she knew they couldn't get over to her.
   Today for no other reason than her brother was standing next to her, Meg decided to pet a friend's dog. This is the most calm, sweet dog on the planet. She allows her little girl to dress her up, haul her around and play mercilessly with her. Meg took her time but managed to sit down and pet the sweet dog. She was so proud of herself. Thanks to Ms. Christine who took the picture and was sweet and patient enough to allow her to try again and again until she was ready.
   This was a hard thing for Meg. Just something small for others. I have no illusions that this is the end of her fear, but know she has proven to herself that she can do something even when it's scary. She's proud of herself and we are happy for her too. Small steps lead to great places.

Ehlers-Danlos

This is our new face of Ehlers-Danlos syndrome. Aren't they just the cutest things?

In all fairness, Adam is the one who was diagnosed this week and Meg hasn't been examined yet, but based on my statements to the geneticist, she has the same genetic disorder. As far as genetic disorders go, this is an easy one to have. I am glad to finally have something to point to and show the doctors from my past I am not a bad mother, even though my children scar and bruise easily and that I am not insane for insisting that a 2 year old waking up screaming his legs hurt at night was not normal. It's not just growing pains.  Now that we know what it is, we know what to look for in the future and what to do about it now.

   Adam has the Hypermobility type (formally type 3) of Ehlers-Danlos. There are other types, and sometimes symptoms overlap, but for the most part, that is his diagnosis. From the EDNF.org site, here's the description:

    Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees)and small (fingers and toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella, and temporomandibular joint dislocate frequently. The skin involvement (hyperextensibility and/or smooth velvety skin) as well as bruising tendencies in the Hypermobility Type are present but variable in severity.

   So the fact that he had "nursemaid's elbow" for the first time at 3 months old and then almost monthly until he was 3 is now magically explained. The long term affects of this disorder are early onset arthritis, say in late 20's or maybe earlier. Scoliosis, which he already has a bit of and easily injured joints. Connective tissue in the eyes may also be affected, so we will watch for that. Treatment at this point is limited to physical therapy to strengthen muscles around joints that could be easily injured. It's not going to be a big deal right now. As they get older, different things may come up, but at least we know what direction to look in now. This also means his NFL career is over before it began, the NBA is out, and he will not be an Olympic wrestler, gymnast or skier. He could still take the gold in swimming though or take the Tour De France title at some point, so look out world.

  Here's the cool factor... at least my kids think so. Bug can take his left arm, wrap it around his back to the right side of his body and touch is belly button. That's pretty darn flexible. Meg can crinkle her thumb back almost to the point of touching the back of her hand with it. Crazy. They think party tricks are fun.