Reflecting

I was going through my "on this day" I'm Facebook and encountered this video that I made four years ago. 

Watching this stirs up so many emotions. 

First the obvious. Looking back at this video and watching my kids play four years ago, it melts my heart and brings up a tinge of sadness that the days of these two being three and one and a half are long gone. Sadness that I can never go back in time and relive these moments, and pain that they are gone. Pictures are hard enough to look at, but hearing that little boy's three year old voice, and watching them run around and be silly is so much harder, yet wonderful at the same time. 

Then there is the deeper level. At this point in our lives, I had been concerned for about a year at some of the things Naomi wasn't doing, and in my heart of hearts I knew she was autistic. That still terrified me because I didn't know what I know now. However, at that time I wasn't so acutely aware of the concerning things she WAS doing, and watching this I see signs screaming at me that I couldn't yet see. At this point in time I still allowed everybody to convince me my concerns were invalid and that she wasn't autistic. I hadn't found my mama voice yet, although I was just starting to in regards to her other medical conditions. It was still a few months after this that I really started researching and started pushing for answers, and it was six months later when she was first evaluated, and we were told while she tested autistic "technically", the doctor wasn't sure enough to diagnose a 25 month old. I left that appointment the way I had so many before, allowing somebody else to repress what I knew as truth (although looking back, I do agree with the psychiatrists decision to wait a year to be sure, as I left with him telling me to come back at three if I still had concerns). 

We have all come so far in our own ways. I've found my voice, and I will use it with every breath I have to advocate for my kids. Naomi is miles from where we were at this time. Notice in the video you only hear her voice twice, when T is pinning her and she whines ever so slightly and at the end when she said Bubba instead of bye. She was completely non-communicative at this point. We did occasionally get a word out of her, but it was typically not used correctly, as in this example. Most of the time she would only scream. Now she talks nonstop. That's just one example. She's a completely different kid, and she amazes me daily. 

I'm thankful for progress, but I'm equally thankful for small reminders like this video of exactly what that progress looks like. 

Like I said, so many emotions...

When the special needs journey gets hard

Today we were officially told Lucy has global developmental delays. Significant delays in every area of development.

It's not like I can deny how delayed my little girl is. I live this reality every minute of every day. Hearing that is crushing though.

I have four special needs kids. My second, third, fifth, and sixth. I am able to see improvement in each, over time, and I've learned to cling to those small, sometimes almost invisible, improvements. I've learned in the dark times to reflect on the progress, and to rejoice in every single milestone reached.

Tobiah has improved a lot in his social struggles, and with help can have successful social interactions. 

Naomi will sometimes talk to people she doesn't know. 

Nette can walk and is becoming more confident in climbing. 

Lucy can orally manage solids and drink a half full or less bottle without needing to constantly stop.

All of these things might seem small, but for them they are skills that we've fought so hard for. 

I work hard to focus on the positive, and to keep the right attitude about their challenges. I want my kids to know that nothing is impossible when they try their best, I want them to know I believe in them, and that I will always be their biggest cheerleader. I want them to know I will never stop fighting for them.

There are times, though, that these things are so hard. What I heard today, despite already knowing it, felt like a punch to the gut. Days like today I find myself crying out for mercy, desperate for improvement, longing for this life to not be my own. 

Lately so many special needs parents have blogged about finding a way to just accept things and be happy. While I think being encouraged to keep a positive outlook is so important, because having a positive attitude is a key piece to successfully parenting special needs kids, I think dismissing the negative and refusing to acknowledge it is far from healthy as well. 

Sometimes this road is hard, and sometimes it hurts like crazy. Not because you are devaluing your child and having a pity party, but because as a parent you want every good and perfect thing for your child, and facing significant challenges, while perhaps is your child's reality, isn't the good and perfect we desire.

The point I hope to leave with you is that it's ok to have bad days. It's ok to have days you hate the challenges your child(ren) face. Acknowledge your feelings, and do what you must to deal with them (my personal favorite is expensive chocolate), so that tomorrow you can wake up the fighter and advocate your child needs.