Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

I am a firm believer that everything happens for a reason and we are in the place in our lives where we are meant to be at any given moment. I believe that Luke was given to me to teach me many things such as patience, strength, unconditional love, and tolerance. All of these are good things to be taught!

With all of the mixed emotions that I have been feeling over the past 2 years with Luke, I feel a calling of sorts. Luke’s issues aren’t really that bad, but we have still been through a lot trying to get things figured out. I have had many days of frustration, depression, anxiety, stress, anger at times, exhaustion, “why me”, etc…. I can only think that if I feel all of these things with Luke basically being a healthy, normal 2 year old, I can’t imagine how other parents with more challenging experiences feel on a daily basis!

I started looking around online for support groups in our community for parents of children with special needs. I couldn’t find anything within a 100 mile radius!! Of course, there are some groups available through some of the state programs and some other groups specific to children w/ Autism, but nothing for parents who just want to get together and share their experiences. All children with special needs are different and will have different outcomes, but as parents, we all go through similar emotions. I think it’s healthy to share these feelings with people who know what it’s like. It has been so hard for me to explain over and over, and over again to family about what is going on. They will never get it!! I get the feeling that some of them actually think it’s “in our heads”. I just don’t even talk about it anymore with them because I get so angry and I don’t want to be angry! I decided to start a local support group to reach out to other frustrated parents. Parents with children of any age and any type of need can join. Currently, I have 3 members including myself:-) I have begun to put the word out to other people I have met with children with needs and I also mentioned it today at physical therapy.

I sort of feel like maybe I have bitten off more than I can chew, even though we don’t have many members yet. I have never really been a leader or organizer of anything! I do think this is something I’m supposed to do however. I’m really hoping more parents join and we all get something good out of it:-)

I will keep everyone posted on my group’s numbers and how I’m holding up as the leader!

Sorry for the lack of updates. Luke and I have been staying very busy during the week with therapy, Mommy & Me class, and horseback riding.

He is doing great and is walking all over the house now!! His balance is still a bit off, but that will get better with time and practice. His ankles still pronate, but he no longer locks his knees. I asked about this last week at physical therapy. They have a new PT who is pretty experienced and she agreed with me that Luke’s current DAFOs are too much support for him now. He is walking pretty well barefoot and is able to get up on his tip toes. With his current braces, he is unable to flex his feet or ankles at all, so I think they slow him down a bit. They told me today that they are unable to hinge his current DAFOs, and he isn’t quite ready for just the ankle supports (AFOs), so he needs new DAFOs that have hinges. They will also be able to cut the height of them down once he is ready for just the ankle support.

This is great news, since Luke has only been in these DAFOs since the end of November. The bad part is, we have to fork out another $1000 for the new ones since we haven’t paid anything toward our insurance deductible yet this year. Ugh! I really hope Obama’s health care plan helps people like us out with these types of expenses! Of course, if Luke needs them, we will find a way to pay it off.

I will keep you all posted!