As I sit here, watching my almost 3 year old crawl around the house. I am overwhelmed with many emotions. (As I am on most days)
I often wonder if I am either not accepting of my child, or if I am still in such grief over her "diagnoses", or if because we still have NO answers on what she has...and each month her "delays" become bigger, more obvious, etc...I get sad. There it is. Truth. I get flat out sad because my child doesn't talk, walk, dance, jump, see like "normal" three year old children. Let's be honest. Let me lay it out for you what her delays are really like...
Lilah will be 3 on November 25. Most two year old children are running all over their homes, driving their Mommies crazy, pulling things out of cabinets, climbing up on counter tops, trying things and exploring, they say the darnedest things, run all over parking lots, etc. My baby doesn't do these things. Yes, she empties my cabinets for me and when she does..I LOVE it. It means her brain is working, moving, and growing. I see posts on Facebook of Mothers who complain about those toddler incidents and my heart hurts for them. Their child may be driving them up the wall with the crazy antics, but at least their child CAN do those things.
Lilah is at a 9-12 month level. Just typing that out is hard. Where her peers are doing all kinds of things, even the boy who was born the day after her is skate boarding, her cousin who is over a year younger started school, soccer, etc....my girl isn't. My girl is trying SO hard to learn those skills.
Read this part very close: I. AM. GRATEFUL for my child. I love her SO much. More than you could EVER fathom!
I just need to be honest that I am still grieving the "loss of the dream" that I had for my child. I had NO warning about Lilah's delays. Every test we had said, "normal fetus." What I hold in my arms is not "normal." I feel as if I am learning her and me each day. I feel like we had no prepare time. We learn about her each day. Each day we see what she can do, or cannot do. We see what she needs and how she needs it. My roller coaster of life is not a tad bumpy. No, I have STEEP highs and valley lows.
I cannot help but feel sad. I KNOW, yes, I do know...that Lilah does NOT know any different. She is SO happy. She loves and adores life. She brings SUCH joy to all who meet her. Her smile will melt your heart. Seriously. I am not just saying this as a biased Mommy. Lilah is amazing. Some days I wish "I" didn't know she was delayed. I wish I wasn't "aware" of it. The harder I push and fight for services and help for her, the more exhausted I become, the lonelier I feel. THIS. Life. Is. NOT. easy. I feel like I need a T-shirt that says, "Warning: Mom of a special needs child. Careful not to make me mad, I never take my gloves off and I will win this fight!" ok, maybe that was a little rough, but it is the truth. I live in a constant state of fighting. I get NO repsite time. The few times I get to get away (sing in the choir, photograph other families, etc) I come home to MORE to do.
Yes, I remind myself, blog my feelings for the world to see, etc. I believe the only way to healing is to get it out, work through the emotions and then complete the circle to gain perspective.
Wednesday morning an 11 year old boy was killed by a hit and run driver in my town. I cannot begin to understand their grief and pain. As I pray for them and ask God to comfort them in a time of such despair....I hold all 4 of my precious babies so close. I thank God for each one of them. I thank God for my friends, family, and SCC family who love us as we are, who reach out to me when I don't know how to ask for help, and allow me to cry. There will never be a "fix" for Lilah, so the most supportive thing for me right now is a person who loves me without judgement, and open ear that will not tell me "how" to feel.
Having a child with "global delays" means that everything is on a much slower level. If you "google it" you will see that globally delayed is a new term that replaces that AWFUL "R" word. So, when you use that 'R" word for something, change it in your brain. Does, "Am I globally delayed?" sound funny now that you realize how it affects someone that you know? love? pray for? think of?
Lilah is "Globally Delayed."
2 comments:
I love you and have broad shoulders and even bigger ears.
I recall reading an entry you wrote once upon a time ago that touched on your struggles you have with your own image, the perception you have of yourself. Your background was a bit rocky and left you feeling emotionally afflicted and insecure. I can completely identify with a background like that. In my experience I have learned that before the ability to arrive at a place of contentment and security in other areas of life (such as with having a child with special needs) first begins with the remaking and working of a healthy self-image.
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