Brain Tired

I had high hopes today of making a craft I've wanted to do all week & of editing & posting some pictures I took with my good camera at the beach recently. (That's right- you're not done with ocean postings yet!)
But, I've spent almost all of naptime taking out my frustration in my kitchen. I made 4 meals for 4 families today. I just needed to get in my kitchen and beat some things & stir some pots, & turn up the heat on my stove, & chop some veggies, & cry. Cooking is really good for pent up anger & frustration. I just tune out the world when I'm in my kitchen. I get my hands dirty & I get lost in the food.
Today was hard. Yesterday was hard. The day before yesterday was hard. I wouldn't necessarily call them "pit days" like I used to experience when Will was tiny. I've just had some rough experiences this week, for some reason.
3 days ago, one of Will's therapists asked if she could bring along two "student" therapists in training. That was fine with me; I love showing off Will's skills! What I wasn't prepared for was the rehashing of Will's medical history. It was just overwhelming for me. And one of the three commented on how Will shouldn't be able to jump, but he can. Now, I get that there is a lot I suppose he should not medically be able to do. But it just has honestly never occurred to me that he wouldn't walk, run, jump, etc. (I take that back, when I was pregnant someone mentioned needing a wheelchair which probably is what pushed me to wholeheartedly believing Will could do all of these things. Not that wheelchairs are bad- I've seem some kids do some amazing tricks in wheelchairs at Scottish Rite. I was just convinced that with the body Will has, we would make it work so that he could be independently mobile.) I suppose that what really bothered me about the comment regarding his ability to jump was that Will was in earshot & I NEVER want him to hear that he can't do something or shouldn't be able to do something... especially from one of his therapists. I refuse to allow limits to be put on him regarding what he is capable of achieving. So, that was our Wednesday. I didn't cry or anything - just felt a little worn out from the big therapy session. Three therapists at once is a lot.
Yesterday, we met some friends at our public library for story time - which also includes a craft & songs. It was okay except that probably 4 of the 6 songs were about either hands, fingers, or toes - & included motions. I don't mind being a little creative with hand motions- I've made up modified motions for Will for certain songs. But some of these were new songs for me so I felt like I was having to be instantly creative with my happy face on. And "Where is Thumbkin" is a ridiculously long song involving all 10 fingers. And then we did a song with toes. I mean seriously - one song, ok. But 4?!?! And then the book had to do with kissing a hand. And the craft involved hand prints. I love Will's hand prints & will gladly do a craft with his hand prints. It was just another reminder of his differences, though, when his craft didn't look like anyone else's. And, again, I felt like my brain was on overdrive - trying to be creative & one step ahead when I wasn't prepared for the songs or craft... all while keeping on my happy face.
It wasn't a bad day - just kind of wore my brain out. And it reminded me that our normal is not the same as everyone else's.

But today has been hard - the full blown crying kind of hard day. The kind of day where I would go buy a Reese's pumpkin (or 2) & eat them if it weren't for the fact that my kiddo is napping & no way am I waking him up so I can satisfy my emotional craving for chocolaty peanut buttery goodness in the shape of a pumpkin. And, I didn't run far enough this morning to justify 2.
After our short run this morning, Will & I met our neighbors & friends at the park by our house to play. A little boy, whom I shall call "Claw," was also at the park. He is probably about 3. Will's friend is 2 1/2 & Will, of course, is barely 2. Claw's mother was at the park but she was busy exercising & doing jumping jacks & sit-ups on the sidewalks with about 4 other moms. Will is becoming more and more independent & likes to climb up the play set stairs all by himself, walk across it, & slide down. My friend & I were nearby talking by the swings. Suddenly, I notice that Claw is talking about Will's hands & feet & roughly grabbing them! I've written before how I understand kids are curious and that is okay but grabbing & examining my kid's body is not ok. It is rude & inappropriate - just as my child can not grab another child to examine their limbs. I immediately bolted up the stairs & sat down with Will & Claw & went through my usual explanation, "That's how God made him, isn't that neat? How many fingers do you have?" etc. I also informed him that it was rude to grab people & that he could not grab Will's hands/feet without Will's permission. I smiled smugly inside when he couldn't accurately count his own fingers even though he was so quick to tell me how many Will doesn't have. Then, he grabbed Will's feet again! I again told him he could not grab Will and that it was not polite to grab. This whole time, Will kept repeating, "Will's hands, Will's feet." His mother either was too focused on her jumping jacks to notice or else she didn't know how to handle her child & the unique situation - not sure.
Claw moved on & then I did what was almost as hard as releasing my child for surgery (not quite but almost.) I pulled him out of my lap & set him back down on the playground - just a few feet away from Claw, & I walked down those stairs & away. I hated walking away but I felt like I needed to act like this was no big deal & let Will keep playing & interacting with the kids. As I walked with my back to Will, my eyes filled with tears. I try not to cry in front of Will anymore regarding comments, etc. I don't want to tangle my issues up with his issues. My precious friend gave me permission, however, to cry with her. She hugged me & told me it was okay to be upset. I needed that - I needed to know it was okay to take off the happy face (I wasn't wearing it anyway) & it was okay to cry with her - away from where Will was happily playing. Sometimes, I feel like I'm not allowed to be upset- I should simply always be grateful for Will's life. I'm not entitled to have a pity party. Twice this week now, 2 different friends have told me that I'm allowed to visit a pity party - just not to live there. And, today, a friend gave me permission to hurt & to share that burden.
A little while later, Will was sitting on the side of the playground when Claw came up to him again & began using his shoes to scoop sand on Will's feet. I watched for a second & suddenly, the little boy picked up sand & dropped it on Will's hair. I asked him to not throw sand on my child. (I think his mom saw that & yelled at him too at that point.)
A few minutes later, Will had found a tennis ball to throw with his friend & Claw came up to him & took it away. I wasn't sure if I should intervene or not since he didn't hurt Will & his mother was technically present. I figured I should let Will work it out but I hated seeing that (1) Will was not able to maintain a grip on the ball to keep it from being taken from him & (2) Will just submitted. I was thankful & proud of him for not crying or getting angry or hitting the kid, don't get me wrong. But, I hated watching him just give in. I realized that Claw is a bully - & Will wasn't going to stand up to him (for good reason!) Will's friend later got the ball somehow & then Claw took it from him too & refused to give it back, despite some very polite requests. Finally, Claw & his family left the park & shortly thereafter we went to retrieve our dog & leave too. As I was untying Ruby, a little girl, probably age 5, who had been playing at the park too, came up to me & asked me about Will's hands & feet. She was polite & took my answer without arguing with me. It was fine &, frankly, the kind of conversation I have all the time. But today, it just pushed me. My dear friend, observed this from a distance & came over as the girl walked away to give both Will & I hugs.
It wasn't over for today.
Will & Ruby & I walked home & then left to run to a consignment sale. While in line at the consignment sale, Will was doing great. We stood in line for about 20 minutes & even though it was lunch time - he was so well behaved. We played one of our favorite waiting games- I Spy. I was so proud of him especially because the little girl in front of us was throwing a constant fit. Will even tried to engage her in a conversation about baseball but she wanted nothing to do with him & yelled, "I don't like baseball!" But, does the lady behind me notice how passionate Will is about baseball or how great he is doing in line or the fact that he is pretty good with his colors & I Spy? No, she notices his prosthetics & proceeds to quiz me about prosthetics & what Will can do. Again, I have conversations similar to this all the time. But, today, I was just tired of it.
I have read too many articles that say I shouldn't cry in front of Will - I can cry with him if he is upset but not in front of him as he may interpret that to mean that I am sad because of his limb differences. He is becoming more aware & observant & so I didn't let him see my tears. My steering wheel, however, has seen a lot of tears.
When R got home for lunch about 20 minutes later, I quietly told him what had gone on today & asked for 5 minutes alone.
My shower walls have seen a lot of tears - and maybe heard some choice words, I couldn't say.
My brain is so tired. I feel like as soon as I step out of my house- even in my own yard- I have to be "on." Despite the fact that I would love to sit at story time & sing mind numbing songs, I feel like I have to be creative with teaching Will modified hand motions. I have to be "on" for crafts - modifying those. I have to be "on" at the park. I have to even be "on" during therapy in my own house- to be cautious about what Will's ears hear & advocating for him. I have to be "on" standing in line at the grocery store- this should truly be a mind numbing type of place but I have to be "on" & ready to answer a question, reply to a comment, or in the case of someone staring rudely, offer either a big smile or glare back - depending on my mood.
Frankly, I'm brain tired. I'm tired of feeling like I am always "on." I don't know how to turn my brain off and not be aware - I'm constantly aware of others' comments, stares, etc. I'm not nearly as sensitive as I once was. Generally, I may notice people's looks or reply to their questions but I don't obsess about them any more or give it another thought. It's our normal to have all that in our lives & I'm good with that. I'm just always aware. I'm also becoming more nervous- I keep reading that age 2 is when kids notice their differences. How in the world do I prepare for that moment?
Just before his nap today, Will & I were having our usual cuddle time in the rocking chair. Suddenly, he began telling me about playing with his friend at the park. And, then, he sat up, looked at me, & started pointing to his fingers & talking about "look at Will's fingers." He began to verbally tell me about Claw. He didn't seem upset so I didn't go there. (I'm also not sure that he actually gets yet that he is "different" - it was more like he was just telling me the story of the park.) But it was the first time he has been able to verbalize and let me know that he remembers an incident regarding his hand & feet differences. I was flabbergasted & nearly speechless except I knew I had to say something & that I could not cry yet or act like it bothered me or was even a big deal today. I asked him Who made his feet & hands & he responded, "Mommy." His next guess was "Will." Then I said, "God" & he yelled, "God!" I told him that God made him perfect & just the way He wanted & that his hands & fingers are great. I told him repeatedly how much I love his hands & fingers just the way they are. I told him I am thankful for him - exactly as he is. He was fine with that, smiled, & cuddled some more. I left his room & cried & cooked my little heart out.
I so wish others would see my little boy for all of the great things he does, his curly hair, his funny personality - & not as someone with differences.
I wish I could somehow go in public with him & turn off my brain. Today, it is tired.
I love being his mommy but I just feel like God is going to have to give me some extra grace & strength - I don't know how to be capable on days like today. Previous incidents may have hurt or angered or bothered me, but they weren't affecting Will - he wasn't aware.
Today, he was aware. And he remembers it. And that means that from now on, he will be aware, he will remember & people won't just hurt or anger or bother me - they will sometimes hurt & anger & bother Will. And I don't know how my heart will take that. Right this instant, that ticks me off & scares me to death. This is one of the hardest things about parenting Will.
I am so thankful for Will. I love him exactly the way he is & wouldn't change his body. But why is it my kid that will be hurt? And will there ever be a day when my brain is "off?" Because my brain is tired.
I love old hymns. Yesterday, I was thinking about something which I'll post on soon - I was even writing notes in my car for that post. And I felt like the Holy Spirit just spoke right to my heart while I was listening to "His Eye is on the Sparrow" & later "How Deep the Father's Love for Us." He reminded me that I don't have to be the one to protect Will. I don't have to be prepared for every moment. He loves him somehow even more than I do & He will protect him & He is always "on."
I was so thankful for that. But it didn't make today any easier- because He has given me Will for a time to protect & teach. And my heart hurts. I wish He would just numb me today - my brain is tired.
ok - I realize that probably this post is quite rambly (is that a word?) & I don't have the energy to proof it.
Thanks for reading, thanks for giving me grace as I parent Will & figure out how in the world be "on" & deal with situations that I aren't covered in my parenting books. Thank you for giving me permission to take off my happy face today - to just be me. It's not a pretty face right now- it's a tired one with puffy eyes & in need of some mascara.
But, I've got a precious boy who will be up soon & who has warmed my heart lately as he wakes up with the words, "Will cuddle Mommy." You bet, Love. Nothing makes me happier than cuddling my Sweet Will... except, perhaps, listening to him laugh, or watching him run & even jump, & smelling his deliciously warm breath when he wakes up.
(I'm not proofing but I did run spell check, & fyi - "rambly" is not a word.)

Update: I took this video today shortly after Will's nap. I guess our pre-nap conversation stuck with him as he began telling me who made him. Maybe this is the good that came out of the difficulty of today. (Remember to scroll to the bottom of the blog & hit pause to hear him)