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With Mixed Feelings



So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis for their "special" kids. Fascinating. If you enjoy useless information packaged in sensational totally misleading wrapping. The gist was that the isn't an actual increase, there is just a shift in privileged parents forcing diagnosis from doctors, and poverty stricken ones not. The later, not because they don't have the means to pay for medical bills, but because they don't have the brains and education to. To this is I just want to hold up my hands in the universal whatever sign and think about something else, like chocolate, but I can't seem to succeed. Especially today. 
Today I brought the little lion man to school.
Today I took a "back to school" pic on my phone, well more like a "first time to school" pic. Today I pretended that I have a normal preschooler. Until I came to pick him up that is. He was sitting off to the side, in the shady part of the yard/ school pick up area, surrounded by adults. The other children were standing around their backpacks, joyfully jigging in place and full of noise.
My guy? Listless and over heated. Cranky and ready to go home. The adults milling around were his teacher, his aid, his PT and his OT. 
Oh yeah I thought to myself, my little lion is of a different color. 
Oh yeah, I remembered those little things that I am instinctively aware of and do automatically for and with Leo; for others, is different and out of the preschool norm. No it's not they did anything wrong, indeed they probably are doing everything better and with more care than me, just different. His therapists are totally great and his new teacher seems awesome. It's not anything about them or the school. It's more like the necessity of his experience versus the typical one.
I'm not really a control freak about Leo's care. Ask anyone who has babysat for us, there are no charts or diagrams, just a brief nod towards the drawer that contains his seizure drug and I'm out.
I didn't have any real nerves or fears about Leo going to school. In fact, I thought it would be awesome for him, and awesome for me to get a much needed break during the day.
However, walking up to get him today, my stomach clenched and I knew viscerally that my auto-pilot care of Leo hasn't done him any favors.
My downplaying Leo's needs, only in the end, serve to make them bigger and more noticeable. I felt proud of myself before how little I have been bothered by Leo's typical peers, how little I care that they are speaking in full sentences and have perfect oblivious control over their flying limbs. I didn't mind, honestly. Leo is his own kind of special x-man. But for his sake, today, I minded. 
He's doing school, just like all the other little guys, but for him, it's different. 
The fun-lets-trace-our-body shadows on crinkly newsprint game for him, is terrifying, because the paper looks and sounds like the paper covering the doctor's exam table, and lying down on it means pain is coming. 
The playground swing, though totally super fun and one of his favorite things is right in the sun at the hottest part of the day and within minutes he's overheating. But to stop swinging and stand in the cool shade isn't super fun and so crying ensues. Again. 
After three hours of preschool with the lion, I saw four exhausted adults.
Oh yeah, I thought to myself, he's my one in six. 
Not because we are poor or rich or smart or not. But just because he is. And for me, he is one in a million, and I don't care. But I care for his sake. I grieve for his sake, that things which should be easy, are hard. Those times I just know what he needs, and others, of course do not, is hard.
He's easy! I say. A cake walk. Just throw him a bone now and then; a kiss and a snuggle and he's a happy man.
But it's not true. 
I've gotten used to him being different, getting special treatment, singled out and marveled over. But it's not me that needs to get used to that. It's him. He wants what other kids want. He tries to do what they do. He has the same expectations and desires, but sometimes, it's just too hard.
But sometimes it's not.
And sometimes it just is. 
It wasn't all bad today, no indeed, it was mostly good, but was it normal?
No. 
He had fun, played some games, did his thing, but I know it was hard.
Sometimes I forget just how hard it is for him. 
For me. 
But he's been through worse. 
And the lion man? He doesn't quit.
So nether must I.

After eating his sister's birthday cake (she turned eight!) he went to bed in his new room in our new house early, tired but chipper and I know tomorrow will be better. If not, than the day after will be, until the hard becomes less hard and just normal. 

Leo chomping at the bit to go explore school,  and dragging me and his PT along for the ride.

I couldn't be prouder of this little guy. No matter what.


Is there anybody out there.... who's still reading this blog? Raise your hand and post "aye!" in the comments....


**update**
Thanks everyone who commented! It really is important for me to know on this blog-iversary that people are still reading! It keeps me motivated to keep posting. Writing, after all, is meant to be read. 
Thanks guys! 

Comments

  1. Aye, with a tear in my eye and love in my heart. The lion is strong like his mama. <3

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  2. I've been following since he was a few months old (probably 4-6m). I love seeing his progress! I don't even remember how I found your blog, but since then I have discovered that my close friends, the Sheehans are also friends of yours. They showed me an Icon that you made; it is lovely. I hope to one day meet your family! My husband is an Orthodox priest at the southern edge of the Adirondacks, so hopefully we will one day!

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    1. How cool! Its such a small world. Thank you!

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  3. We have, and always will. Leo and his entire pride will always be on our and our parish's prayer list.

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  4. Every post, dear Anna. Happy birthday(s) to the Dumoulin kids!

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  5. Reading every post, and praying for you all. Hugs to Leo and the birthday girl.

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  6. Aye! It's always a joy to see little Leo's face pop up in my blog feed : D

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  7. Nicki L (St. Elias - Dubuque)August 27, 2014 at 9:29 AM

    Oh yeah! Ever since day one! All our love to each of you, and our continued prayers, as always!

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  8. Seriously Anna, keep posting when you can. I know you are busy...but your words have a way of sometimes really helping me along, and I love hearing about your family. Thanks Congrats on Leo's first day of school!

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  9. Aye. And it made me cry - in a good way :)

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  10. here! not easy for sure. but God is with you, we must cling to that. will light a candle for you all...

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  11. I read :) My friend Laryssa shared this blog with me years ago. And I post updates for prayer on my FB.

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  12. I read this blog regularly. Because I knew him when....... Because I love seeing him now. Because he is awesome. He just is. And your words help me when I talk to new mothers who may be entering a world similar to yours.

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    1. Sterling you are awesome too! I need to credit you for the famous newborn Leo pic...:-)
      Are you still spreading the love at the dhmc nicu?

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  13. I can't remember how I found you, but it was in the beginning. And then at some point you posted about church and I was shocked that you were Orthodox too. It seemed like such a crazy coincidence.

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  14. We are! And my little 4 yr. old guy has worn his Leo t-shirt with pride many times. We love to keep up with amazing Leo and keep him in our prayers. The Lord will guide him through school. The Lord knows what to put in Leo's heart as he begins this journey. Us humans can only depend on that part for sure.

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  15. I feel like just yesterday we were pregnant neighbors at SVS! I love reading your blog, and I hope we can visit in real life soon. I can't believe Nika is 8, but Michael is 6, so it must be true. All our love, the Van Sickles :)

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    1. Wish you could would come up north one of these days...its been so long since we've had the pleasure of seeing you guys! Send me pics of the boys one of these days...:-)

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  16. I read! Both because I'm interested and because I believe strongly in bearing witness. And preschool! Goodness! He is a wonder.

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  17. Your family and your parents are always in my prayers. God Bless!

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  18. I found your blog while halfway through a high risk pregnancy. I was blessed by your strength, honesty, and faith. We are also Orthdox, so it was incredibly inspiring to see others walking in the same faith through the unknown. Our daughter was baptized in the NICU the day before lifesaving surgery. Now she's 3 1/2 :) God is good! Thank you for everything that you have shared over the years. God Bless!

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  19. I read every post!!

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  20. I read! And I understand just a bit. I remember picking up our daughter at preschool and she was just not like the others. She also had an aide and therapists galore. At the time she could not communicate and we often thought, maybe this preschool integration thing was not a good idea. Well, that was many years ago. We no drop off and pick up our 23 year old daughter from her job every day. Some days it is still hard, but SO worth all the tears and hard work! Reading your blog brings back memories. Go Leo!

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  21. Anna, I read every one of your posts, and pray for you all daily. I've been praying for you and your family ever since Leo was born, when a friend from Claremont asked for prayers on the Orthodox Women's list. Keep writing - it's a good way to process what is going on in your life, and it's good for us to read and pray.

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    1. Okay, since you asked...I pick your blog over chocolate any day of the year.
      Yours is my lifeline as momma and sojourner.
      Happy belated birthday to the cherubs! We miss them and you so much.
      Joanna

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  22. I also read your posts and pray for you all every day. You're an inspiration.

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  23. I couldn't have written this better myself. My son has a severe speech delay and an autism diagnosis is likely this year, his first year of preschool. So much head nodding while reading this, I laughed at myself for all the head bobbing I was doing :)

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  24. Yes, I read. Keep 'em coming. Great reminders to pray and cherish the children, no matter their needs. Each one is a miracle and I love hearing about your Lion.
    (And I can't wait to hear about the miracle house story.... don't forget!)

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    1. Haha! I won't I promise! I just want the perfect exposition of photos from the before and the after. The thing is we are still working on the "after" part so once I'm putting down the paintbrush for good, or at least for a while, the house post will be shooting out here in no time. :-)

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  25. I regularly read your posts. Thank you for sharing your heart and Leo's life with us. You have the gift of encouragement in the midst of tremendous trials. Praying. Betty Sue Robie

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  26. Hi Anna, we were visiting New Hampshire in August and came to your church on Sunday. Everyone was so warm and welcoming. Your father told me about this blog and I have read every post of it. Leo is amazing and beautiful, and your writing is such an inspiration.. Please keep writing. You are in my prayers and maybe we'll meet next time we are in New Hampshire.

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