Avery Grace

Avery Grace

Tuesday, July 15, 2008

Thoughts of Today.

How do you separate your child's successes and failures from your own? Our children become so much a part of us, it is like your heart is beating in their little bodies. Is this codependency? I guess so. But as a parent, I don't know how to do it any other way. The love and passion is so strong, so constant, so all consuming. But it is crucial that I learn how to have a good day, even if my daughter has a bad day. It is important that I learn how NOT to depend on her success for my own personal fulfillment. If I don't figure this out soon... my spiraling depression could get out of control. Avery is in what I guess is her second regression. When the neurologist first examined her a few months ago, he said "Well I would say Autism, but she doesn't have the sensory deficits, so I guess PDD-NOS" (a less severe Autism Spectrum Disorder.) But now, a few months later, she is TOTALLY having sensory issues. She needs tactile input ALL THE TIME on her feet and hands, is squealing and walking around in circles more often. So the hits just keep on coming. I try and try not to focus on "what the hell happened," because I really don't know if we will ever know. Was it the 16 rounds of antibiotics in 10 months? Was it the vaccination overload on an already weakened immune system? Was it something she started eating? It was CERTAINLY something. One year ago this week her Early Childhood Intervention team first evaluated her for what was then considered a very mild language delay. She only had about 10-15 words, and was using gestures and signs to communicate. Now, she has virtually no words, and also stopped using signs and gestures. Occasionally she points at something when prompted, but otherwise would go hungry, thirsty, and unchanged if we weren't on top of her needs. It's enough to drive a mother half crazy. Especially when I am the one staying home, scheduling countless therapies, and watching her child struggle to learn the most basic of human functions/relations. But on the flip side, I can't imagine if I couldn't be here to participate in her remediation. I am way too controlling to let someone else be responsible for helping my daughter get better. :) What I need and want to do is be grateful, instead of being so sad all the time. After all, Avery is VERY happy, loving to me and Bryan, and easy to be around. I want to enjoy my precious and beautiful daughters, and work towards some sort of acceptance for that which I cannot control. My friend and parents suggested the serenity prayer. It's a good idea. So with that, some personal counseling, this outlet to journal, and maybe some medication :), surly my outlook WILL get better. For now though, I guess I still need to grieve. In many ways I have lost the daughter I once had, and I have to let her go. I need to find ways to connect with who she is now, and continue to help her learn how to connect with me. I need to really let myself bond with both of my daughters, and stop letting my fear of losing them inhibit the utter joy I know that they bring to my life. All we ever want is the best for our families. This is the hand I was dealt, and I intend on playing it as smart as I can. I can't promise there won't be sweat, tears, anger, resentment and fear, but I can try to overcome those demons to embrace the light in my life... which is absolutely my phenomenal family. Perfect in many ways, just as they are.


Anonymous said...

Sweet and wonderful Jenny...we are all here for you and in our thoughts and prayers. Your little angels have been given such an amazing mother and I only hope to have as much strength as you do. I am sitting here with tears running down my face because I just don't know how to help you or your family. Please know that we think about you all daily and are here whenever you need anything.

Love, Jill & the Boys

Sara & Patrick said...

Jenny...you are an incredible mother, woman and friend. You are loved and supported more than you will ever know. I wish I had words to comfort you, but I don't. Know that you are in my thoughts and prayers daily.

Regina said...

My Dear Jenny, I'm sorry we have not had more contact. I think of you and your struggles often. If anyone has the tenacity, inner strengh and enormous capacity for love it is you.. My heart is with you. Do get some support and help. You can only be there for your girls if you keep yourself whole.. Don't lose yourself. I'm speaking from experience..
Love your Cousin - Regina