I awaken to the sounds of purposeful thumping down the stairs and loud “AAAWK”s.
Ruby.
I overslept again. It’s easy to do. Once Ruby and my 2yo are in bed, it’s a quiet couple of hours of almost uninterrupted painting, chatting with my older children,or sewing. My eyes tend to wane before my will does, but I stay up even longer to hold a flashlight, reading into the night.
But she’s up now and the games have begun. She will be on the run until she’s in bed once again, and we will all be chasing her in the meantime. Sometimes she will need to be held tightly, against her will, because she wants to hit other people out of her own frustration. Sometimes she will decide the milk isn’t good and deliberately pour it onto the floor or throw the food she doesn’t want. She will scream when you say no to the knives, no to climbing up the gate, just no.
I will myself to get up. Ruby is yelling, waking the others. In my head, I hear how people with Down syndrome are so happy all the time.
Maybe in Ruby’s own mind, when she has access to knives and puts mud in her sister’s hair, maybe she IS happy. But this idea that just because you have an extra chromosome you’ve also inherited the happy gene is either a misstatement at best or an outright lie. It doesn’t do anybody any favors that all-out-cheeriness is expected at every waking hour.
I wonder why we do this. Why do we talk about the blessings of special needs children, of adoption, of large families, of homeschooling, of living in the country…but no one wants to give the other side of feeding tubes all night, the trauma of separation anxiety, financial struggles, learning disabilities and mud?
It’s sort of like inviting people to church. Come! We have programs, games, popcorn and potluck! Accept Jesus and all will be rosy!
It’s much harder to be truthful, to say, You’re invited, and we do have some pleasant things, but Jesus needs to accept YOU, and frankly, you’re unacceptable….your sins are filthy and you need to repent. Oh, and if and when you do, Jesus doesn’t promise you the best parking spaces everywhere you go. He promises persecution and trouble. BUT He’ll be with you, forgive you of all your sins and you’ll live forever in a place you’ll actually want to be in. Which–actually–makes the hardships and all of the pain worth it.
I’m combing Ruby’s hair. She’s grabbing at my hands, yelling “AAWK”. I get her to her chair, strap her in, and give her baked rhubarb-oatmeal and milk, which thankfully she can feed herself when she’s not throwing it to the walls. She giggles and gives me the biggest grin. Then she says, with actual words I can understand, a full and understandable and appropriate first time ever two-word sentence, “Thanks, Mom.”
Ruby is not happy all the time, but neither am I. But, together, we find joy in the little things, the little wins, and perhaps that is where the real blessings are after all.
I love your raw, honest truth about life. Thanks.
This is such an encouragement to read today. Two of my daughters and I spent the last week taking care of my three grandsons (Mom and Dad were on a week long 10th anniversary getaway). The middle child, Jackson, is six and has DS. It was an education for all of us caretakers. It gave us such an appreciation for what Mom and Dad do every day for these little fellows. We had a very good week with the boys, but the reality was Jack had had enough yesterday and just screamed and cried. I got down on the floor at his level. He reached out his hands and put them around me as I embraced him too. We just held each other as we sat there for a minute. I prayed out loud asking God to calm Jack, thanking God for this precious little guy. Surprisingly (because it doesn’t always happen this way), he calmed and we just sat there a little while longer. He then pushed away and got down to the business of putting his cars and trucks on the windowsill and proceeded to play with them. Wow. How many times has God done this with me? Countless….
Thank you for being real and sharing…it’s of great encouragement to others! 🙂
This made me teary. Thank YOU for sharing with ME.
Keri Mae, I am so blessed; what an honest, transparent look at life likening it to inviting someone to church. This is challenging, b/c I am not always happy and am learning that it is OK…what is it that we are told: that He who began a good work in us will be faithful to complete it until that day? The Lord is working on me, you, our young people, on your Poppy and Ruby. My heart goes out to you, dear Mama. I am thankful we can connect via SMI. I am praying for you and myself that the Lord will continue to extend to us the grace, mercy, and steadfast love that He so freely gives to us undeserving ones. I love your encouraging blog!
Isaiah 40: 10-11, 29 – “Behold, the Lord GOD will come with might, With His arm ruling for Him. Behold, His reward is with Him And His recompense before Him. Like a shepherd He will tend His flock, In His arm He will gather the lambs And carry them in His bosom; He will gently lead the nursing ewes….He gives strength to the weary
and increases the power of the weak.”
Thank you for the blessing of reading your story. I am touched! <3
Thank you, Jacqueline 🙂
Keri Mae, I am Jack’s dad which Pat speaks of in the previous comment. Pat shared with me your blog tonight as we are all vacationing together over this long weekend. As I read this blog, lots of limitations do come to mind that are realities when having a child with Down syndrome. Yet too often we think that we deserve as reality that God does not promise. Thanks for being real.
Sincerely, Jack’s Dad.
Thank you. Tonight Ruby was able to communicate to me exactly why she was frustrated and exactly what she needed (via sign). It felt like a big *win*! And Pat has been such an encouragement to me; I appreciate her comments. Give her a hug from me 🙂