Tuesday, September 12, 2017

Am I Being Real?

"Don't you ever struggle?"

I was surprised I was asked this question, because I thought everyone knew I have struggled. I've questioned my faith, I have fought post-partum depression, and have wanted to throw in the towel. I have cried many tears after every diagnosis my child received, and experienced uncontrollable anxiety in response to some of her delays and illnesses.

I have hinted at some of these issues in my writing. But, I suppose that much of my writing does focus on the positives instead of the negatives. There's a few reasons why I don't often talk about my ugly feelings and struggles that pertain to my daughter's diagnoses. The first being that even though I still have occasional struggles mentally and emotionally, I have grown so much. If I would have been writing during the first 3 years of my daughter's life, I guarantee you that I would have won the world's most depressing blog award. I was completely overwhelmed by Down syndrome, the heart defect and surgery, the medications, the developmental delays, therapy appointments, doctor's appointments, and feeling like I was never doing enough. Yes, I struggled.

My daughter and I have been together for 11 years now. I know the Jaycee beyond the diagnosis. Let me tell you, she's a pretty great child! Initially, I had a hard time finding Jaycee in the all the labels and medical problems at the beginning. But, my feelings are much different now. I am not overwhelmed by Down syndrome, her delays, and her Intellectual Disability. I'm just at a different place where the struggles are not front and center.
I may have dressed up as Barney a few times for Jaycee while she was growing up. That's love folks!
The other reason I don't share all my ugly feelings on here is that I know for a fact that some people who are considering abortions look at my blog. I don't want negative post after negative post on my blog, because I don't think that would represent how I really feel about my daughter. I would choose my daughter a million times over. After all, every parent has times that are hard for their child. A typically developing, healthy child can be bullied at school, be unbelievably disrespectful to parents, and cause all sorts of heartache and headaches for parents. Nearly every parent has some problem with their child, but I do feel that fact is overlooked by some outsiders looking into the world of disability. No child is guaranteed to excel academically, socially, or athletically-Down syndrome or not.

Still, there have been some rough patches in my parenting journey. Sure, it wasn't fun changing a 4 year old's diaper. Yes, I use to break into a sweat with the thought of taking my daughter out in public by myself because she was going to run off from me. And to be honest, the lack of babysitters and respite care has been a real problem for years. Please don't get me started on the medical bills! I think my family could have taken a dozen or so trips to Disney on what we've spent.

So I ask myself, "Am I being real on here?"

If I am not honest about ALL of my feelings, am I alienating some people? Are there some struggling parents who read my blog who think every parent is always happy? Do they read my posts and feel alone? I hope not.

I recall a few years ago being in an online Down syndrome group of moms. One mom commented that she often "forgot her son had Down syndrome." Another mom bravely wrote, "I can think of nothing else but my son's Down syndrome." Then all hell erupted on this online Down syndrome community. Moms took sides. Some claimed that a "good" mother should be able to see the past the diagnosis. Others (like myself) defended the mother because there are some times in life when the diagnosis does seem to take center stage of life though no one intends for it to be that way. The group was never the same after that heated discussion.

That online feud has stuck with me years later. I never want to be the person who causes a mom to feel bad about their feelings. I don't want to come across as someone who seems to say, "I'm doing great. Why aren't you?"

The truth is that I have struggled. I've had moments when I have wanted to throw the covers over my head and stay in bed all day. I've envied other parents whose "big" problems would be a piece of cake for me.

But you know what?

I DO get out of bed every day. I face the problems we have and try to learn something from them. I love my daughter fiercely (and my husband and son). I experience short lived heartache, and then I experience tremendous joy! We have a rough patch, and then we have some very calm weeks and months. I can't imagine my life without her nor do I want to! Yes, there are hard times, but there are really, really good times too.

That is the REAL me!

1 comment:

  1. Thank you for your honest from the heart post. I think so many of us raising special needs children feel this way. I would choose my children all over again, but there are moments it overwhelms me. But I still feel deep joy and gratitude. Thank you


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