Dream of Cute Shoes

Support groups come in all styles. There are support groups for AA, Alzheimer, single parents, cancer, PTSD, anger, anorexia and parents with special needs children. The list goes on and on. All of these groups have a common theme. That theme is a connection or support from others who are in the same situation. Whether you are newly diagnosed or a seasoned support groupie. Everyone can learn, support, and relate to each other. Regardless if you have a loving and supportive family the bond formed in a support group can be a rewarding experience.

25 years ago I walked into a room full of special needs parents. I had no idea what to expect, and I didn't give it too much thought before arriving. I had been invited to a support group for special needs parents by the director of the facility where my daughter attended a 0-3 program. At the time, I did not feel I needed any support from anyone.  I was Meghann's mom, and I would take care of her by myself. I remember thinking that I just wanted an excuse to get out of the house for one evening without worrying about childcare. I was more than thrilled to use the babysitting provided to sit quiet for an hour.

What I didn't realize was that I was exhausted from lack of sleep, lack of help, lack of socialization, lack of support, lack of funds and working full time. I was overwhelmed  with providing around the clock care for my special needs daughter, and I didn't know it. I never allowed myself to be tired or the time to go through a grieving process of the dreams I had for my baby girl. The dream of dress up, cute shoes, and parties. Instead my days were filled with finding pants that fit over braces and the cute shoes were replaced with AFO's ( ankle foot orthosis) while the parties were replaced with physical, speech, and occupational therapy.

I soon learned while I was  attending this group that it was exactly what I needed. When all of my friends children were busy hitting their milestones in development. Meghann was still working on trying to sit up without help. In the support group, I met parents that were going through everything that I was with Meghann. The connection and support that I developed with these parents has been a lifesaver for me. We have shared many experiences through this support group. We went through heartache, joys, illnesses, developmental milestones, IEP's, births,  doctors, death and divorces together. To this day, I have maintained the relationships of the people that I met in this support group 25 years ago.

I hope to renew and begin similar connections through the private online support group that will be beginning soon.

As our children grow into adulthood our focus changes however the support we need in transitioning will not change.

The vision is to begin a monthly support group online where parents/guardians/families can come together in a safe environment to share their concerns, experiences, knowledge, and joys with one another. As part of the online support group, there will be professional guest speakers that will provide valuable information to the support group.

Regardless what transition or stage you or your loved one are in, you are welcome.  There will be something for everyone in this support group.

If you are a seasoned parent/guardian/family member  then consider paying it forward with your expertise to others transitioning. Let's pass on the power of knowledge to each other.

Coming soon: An in-person support group meeting in Galesburg.

Feel free to contact me with any questions and comments.  I will gladly consider suggestions or ideas

jillianm1963@hotmail.com

http://parentingcelebratingsmallsteps.blogspot.com/

Bye Mommy

Meghann turned her wheelchair around and said “Bye Mommy.'

I stood there as if my shoes were glued to the floor. I couldn't move. I was stunned. My eyes followed her down the long hallway toward her new independence without me. That was it. I was no longer needed. I waited for a trap door to open in the floor and swallow me up with all the other “useless moms.”

Dan gently placed his hand in mine, and we quietly left the building. Dan automatically opened the van door for me. He had been opening my car door since the day we met nine years ago. Somehow this small act of kindness felt different today. I was right. It was different. This was the beginning of a new journey for Meghann, myself, and Dan. I watched Dan slowly walk around the van, and climb into the drivers seat. I kept Meghann's door to her new home in my peripheral vision waiting or hoping she would appear begging to go home with us. I couldn't stop the lump in my throat from growing, and soon the tears were blinding my vision. Dan wrapped me in his arms, and I cried for what seemed like hours. When I finally stopped crying, I looked up at him with my cheeks still wet from tears. His eyes were blood shot from his own tears. We were a hot mess! Dan handed me the tissue box, and our tears turned into laughter. I mean really, did we want Meg to wheel out to us crying and begging us to go home? Well, maybe I wanted it a little bit.

Meghann moved into an independent home with seven other girls three years ago.  I think it was my worst and best day of my life. It was the worse because I had an overwhelming amount of guilt for leaving Meg in the home. It was the best day because I was excited to see Meghann begin to blossom into an independent young adult. Although I knew that Meghann would thrive, it didn't stop my guilty feelings about her moving out of my home. Of course, it didn't help when “friends” said they couldn't believe I was putting Meg in a home. My response was always the same. “Doesn't Meghann deserve to have friends, a job, and a life outside of my home? After all, isn't a parent's goal to raise their children to become independent from us? Why should Meghann be any different?

The first week that Meg moved out was like a vacation for me- no diapers to change, no medicine to administer, no therapy, no bathing, no dressing, no brushing teeth, no combing hair, and so forth. But,it wouldn't take long for the pangs of guilt to creep into my head. All it took was for me to vacuum up a puzzle piece or crayon, and my emotional roller coast of guilt would take over. I couldn’t win.

After a week, it was  finally time to go visit Meghann. I was like a kid at Christmas. I could hardly wait to pick Meg up at her new home.  We decided to take a trip to the mail after lunch. When we arrived at the mall, there  happened to be a kids fun fair.

Meghann and I went to the end of the long  line to get her face painted. While we waited, I chatted with a mom in line ahead of us.  We talked about the face painting and her children. She asked me if Meghann was my child.  The next comment left me speechless. She looked directly at me, and said “Good for you. So many parents put their special needs kids in those homes. That's so awful.”

 WOW! Meg had just moved into her independent home. That comment was like a knife stabbing me in the heart and then twisting that knife deeper and deeper. How could a total stranger make me feel guilty? I am usually quick to respond to people and their ignorant comments. Today was an exception because  I was struggling with my overwhelming desire to bring my baby home. I was constantly telling myself that Meghann's transition into a new home was not about me. It was also not about others ignorant beliefs of what I should or shouldn’t do for my daughter.  I am not sure I will ever totally eliminate guilt from my mind. I do know that every time I walk in the door at Meghann’s house that I feel the love of family from Meghann's roommates and staff. There is a positive energy that instantly wraps around anyone who is lucky enough to enter the house. I am one of the lucky ones. I have been wrapped, surrounded, and swallowed up with the genuine love and goodness in Meghann's new home. I think I can learn to live with a little guilt. At least for now. 

Listen to this interesting short TedTalk by Brene Brown. It is worth your time. She's awesome!

https://www.ted.com/talks/brene_brown_on_vulnerability?language=en