The Quiet Side: A Battlefront

Behind all the posts about celebrating a child with special needs, behind the cute pictures of smiles and words of inspiration is the quiet side of me where I endure in the dark. 

It's lonely here, but I'm independent and don't know how or when to ask for help. My pride stands in the way and tells me if I say "when," if I admit a struggle too big to bear alone, then I admit weakness and defeat. Pride tells me it will be complaining and that's ungratefulness; it's not godly or encouraging or pastor-like.

But is it when I snap? When I "lose-it" over spilled milk because it's been done deliberately out of frustration from my child who cannot speak? I cannot speak. I'm just as handicapped.

I shove it down and try to contain boiling water with naked hands, raw from the wringing. If anyone knew this struggle...

Not for pity's sake--pity doesn't help, it doesn't offer babysitting or call me for a break--I'm still waiting by the phone. Pity says "poor you, not me." I don't need pity. I need a real date night with my husband without the guilt or worry of leaving him with someone. I need to celebrate our 10th anniversary 2 years later with more than just dinner and a movie. 

I don't need words to tell me I'm great or the best or blessed. I need listeners without advice or judgment. It's hard to raise a child with special needs.

My son cannot form words so he acts out a lot of his communication, which can be loud and look like spoiled tantrums but I can imagine being frustrated when you can't speak your mind. The worst part is the scream--the jarring, high-pitched, give-me-your-attention-I'm-angry scream that breaks through any ounce of calm and tranquility near and far. I ignore the onlookers but it magnifies stress levels when you're wondering what they all must be thinking.  My reactionary self wants to scream back at times. I fight the nonsense of fight or flight and pick him up to soothe him instead. That must look like coddling to some. But they don't know this fight, these methods. They don't know my son.

He runs on a whim so I'm on high alert 100% when we are away from home--do you know what that's like, when family gatherings are a tense roulette of "where's Marty?" I'm constantly watching exits and counting heads and checking rooms. I don't socialize much at events, sit down for a long cup of coffee. I can't even make it to some events because we come up short figuring out loss prevention strategies or we've calculated the risks being too high in our minds. If only we had extra people sign up for Marty Duty.

My son has no friends. I'm not sure he wants friends or knows that it is good to have and to be a friend. No one asks him over for play dates. Maybe I should intentionally arrange those, like a package deal. My mom was smart, she always said about me and my sister: "One cannot go without the other." My sister is my best friend now. 

He gets red and yellows almost everyday at school because his aides don't get him. I know he's smart, just misunderstood. It takes time and energy to work with someone who doesn't speak your language. My biggest fear is that they'll suggest a lower functioning classroom and the walls will close in on me and I'll have a panic attack where I blackout. And then I'll gain my footings with steel hearted determination for inclusion. Because. It. Matters.

I worry about bullies because he can't even tell me about them. I see him picked as the villain all the time to run from when typical kids want to "play" with him. I step in and redirect and educate preschoolers who think it's just a game but I'm trying to unwind ancient evils that says "enemies are anyone different than you." And all the while stifling the twinge of pain that arises when you are trying to remove those sticky labels from your child.

He can obsess over small things and have a meltdown if not given the proper amount of time to transition. DVD loops are his favorite. But if given time and a warning that he's done he usually--usually--shuts it off...and then asks for the iPad. Or my iPhone. I've grown to really hate technology. It causes such a struggle to keep him in the real world with real social interactions. 

It's hard to share these burdens, but bearing them by myself doesn't work and getting weighed down by the load isn't fun. This place can suck at times and it's not all rainbows and unicorns. Advocacy and awareness need to happen for the parent as well as the child--we need your help. I've already mentioned some ways.

And don't take no for an answer. We are fiercely independent and are so busy taking on the battles of the world for our kid we forget about self care and community. We probably have hero complexes and think we are superhuman after a diagnosis, but grief comes in ages and stages; this is something we will never shake. And going it alone is like trying to breathe mud--suffocating. 

To the Boy Who Pointed and Laughed at My Son

I knew this day would come eventually. The sensitive mom inside me wanted to break a little. Instead I just shook my head and gave you that mom look which told you "Enough."

I don't know what you meant by calling my son a "zombie baby", pointing at him, repeating it over and over to your two friends. They didn't laugh at your "joke" and neither did I. You kept making eye contact with me and I wouldn't break your gaze. I wanted you to know that I heard you. I saw you. I wanted to make sure that you saw me; my son was not alone sitting there while you made fun of him. 

My son liked your costume. He liked the whole parade of kids in costumes getting candy at his stop. You didn't get a chance to see him in his Buzz Lightyear costume. He handed out candy with professional precision at a rate any of his occupational therapists over the years would've been proud of. He trick-or-treated in the same line of kids you were in just minutes before you showed up. Now he was tired and wanted to watch all the people passing by...including you.

I just wanted you to know he most definitely was not phased by your teasing. In fact he'd probably invite you to sit with him, have some M&M's, enjoy some laughs. I tend to follow his lead with people, and he smiled at you. 

I didn't scold you outright in front of your friends because I could've easily been you at your age, trying to make people laugh at the expense of others. But I took up the invitation to join him and see things from his perspective. I've learned to enjoy the show. It's the best seat in the house.

Sadly and yet thankfully you are the only one who has ever done that to him in the 6 amazing years of his life. Of the thousands of people going by who smiled and waved and gave him high-fives today, you were the only one bold (and unwise) enough to tease him to his face--with his mama close by. It took a lot in me not tear you out of that line. I owe that restraint to Marty and Jesus.

You see my son has a fan club. I've lost count of its members because they join everyday. I shook my head at you because you don't get it. You're missing out.

I hope your friends didn't understand your joke altogether which is why they just stood there silent beside you. Maybe they stayed still because they saw his defender while you didn't. They were smart not to join in but maybe they could stop you the next time you decide to take cheap shots at a kids who are different than you. 

I hope you get second chances to be a better friend than you were today. I hope you get to enjoy life with people of all abilities instead. And take the lead of your friends. If you can't say something nice (especially in front of their mother) don't say anything at all. 

Anyway, there is plenty of room in his fan club for new members. It's free to join and we have good candy. You and your friends are welcome.

Beautiful Yes

On a whim sitting at Panera eating the leftover muffin scraps my youngest didn't eat, I texted a friend. That friend runs House of Providence. In moments my daughter and I were gathering our things and leaving the suburb for a 30 minute drive to Detroit. 

It had taken a lifetime, and a closet space breathing in the closeness of God, and this and that and dreams--and so many dreams, dreams I didn't know the meanings of until now. It had taken so many moments and prayers and text messages and weeks and months and phone calls and crying out to God to lead to this moment, a moment I didn't even know was coming, that wasn't even on my radar. You have plans for your life and God has plans for your life--and I'm telling you we cannot even begin to fathom the awesome and incredible things He has in store.

"Do you want me to bring her down so you can meet her?"

I was nervous but so excited as I sat in a small room with my little girl waiting to meet her, to see what she looked like, to see if what I had pictured was anything like her. My "yes" to God was on the table, even if my knees were on the floor. He can do so much with just a simple "yes." I have a front row seat of watching it unfold in faithful rows before my eyes.

Then there she was. So precious and sweet and 17 and vulnerable and shy, shy because of her trauma. She smiled and reached out for my daughter as she sat down as one reaches for a pillow to cling to on a couch. Adele colored with her. This teenager drew a heart with an arrow through it--probably something she drew all the time. I'm not overanylizing when I say that real arrows have pierced her own heart.

I'd ask her questions, she'd smile and look up with an answer, I'd get to see her face light up then then quickly fade as she looked away; she'd go blank. I asked a lot of surface "what's your favorite" questions. Not sure how the meeting was going judging her reactions and the nervous bouncing of her knees, I asked if she had any questions for me. She blurted out a question she had been longing to ask: "Did she talk to you about the possibility of maybe doing...home visits?" 

My heart could've soared at that moment. Trying to stifle a giant smile and a loud and crazy "YES!!!" I answered it was absolutely a possibility once all the paperwork and things were in order.

We said our goodbyes and she went back to school. I cried with my friend who I told more and more details to this scarlet thread, this teen now being woven into a redemption story fashioned by the Lord. 

I didn't know what exactly it meant to say that the Lord was beautiful--and now I know. He puts orphans in families and gives those families new trust and understanding of His great love. What could be more beautiful than this?

I saw a journal online with Jeremiah 29:11 etched on the front. It was in her favorite color. I went to the bookstore and snatched up the only one they had. I found a card and some other gifts--a cross bracelet that was her favorite color, some nail polish and a coffee drink. I was feeling silly putting together a gift to give to her so soon, but I needed to. I felt silly all day about it but I wanted to do this. I thought it might be too much too soon--but I had to!

I heard her voice bubbling with hope on the phone today as she thanked me for the gift. She told me about her day in full sentences, and her weekend. We plan on playing guitar the next time I come to the house. She loves music. It's like she was meant for our family. The Lord knew she was ours before we did, before she did. And she fits. 

I reassured her about home visits to ease some of the worry she had that they may not happen. I encouraged her to be patient and hopeful in the meantime. We said our goodbyes and hung up the phone. 

Today I later found out is National Daughter's Day. The gift I gave was not premature, it was right on time. It wasn't silly, it was providence. She ages out of the foster care system in May--9 months from September. I'll carry this daughter for those months in my heart, making ready a place for her in our home. This is the beautiful yes of God.

Here we go!