Sometimes there are bad days

Choices will continually be necessary and -- let us not forget -- possible.  Obedience to God is always possible.  It is a deadly error to fall into the notion that when feelings are extremely strong we can do nothing but act on them. - Elisabeth Elliot

I am in the habit of practicing the discipline of gratitude.  It has helped me keep perspective and my sanity. But I am going to take a break from this for a minute and get real.  Because if I hope to use this blog to help others in my shoes, then I should write it all: the good, the bad, and the ugly.  If you're someone who reads my blog for the positivity, you might want to skip this one.

Most weeks I'm all like, whatever, man. God made every individual unique and beautiful.  We need to embrace our differences.  Well, sometimes being different sucks. There I said it.  And this week, for me, is one of those weeks.  I am not really sure what triggered this.  There has been no major event.  There were no major emergencies, surgeries, or trips to the ER.  Everyone in my family is alive and mostly healthy.

Perhaps it was the two separate instances this week where I noted Willow's peers being mean to her.  I saw them pushing her away and telling her no when she attempted to play with them.  Part of me thought that it was typical toddler behavior.  But then part of me wonders if they know.  Part of me wondered if, even at two and three years old, Willow is a target, because she is different.  It makes me sad.  It makes me want to curse.  It makes me want to fuss at other people's children.  But I do not.  I restrain myself.

Perhaps it was because this week I have been around more typically developing children than I usually am, and it serves to highlight our delays.  I see what things should be like or could be like, and then I start complaining.  I have complained inwardly mostly and outwardly some every time I have hauled Willow's heavy self around on my hip, because I want her to walk so badly.  I try so very, very hard to show grace when other people make insensitive comments.  I try.  Most of the time, I am successful.  This week I was not.  Comments like, she will walk before you know it, and then you'll wish you hadn't been in such a hurry were pretty much unbearable.  I am sure that I will not wish that.  I am sure that she can get into whatever she wants, and I will not care.

Kelle Hampton is probably one of the most popular bloggers in the world of Down syndrome. Her blog was the first one I found when I googled Down syndrome and blog one night while Willow was in the NICU and I was pumping.  I am not a Kelle Hampton hater. She has her fair share out there, but I am not one of them.  I love to watch her daughter Nella grow through Kelle's photos and videos, and her story is one of the ones that inspired me to write my own.  Nella is so cute and Kelle's voice is one of optimism and hope.  I see the videos she posts of Nella dancing and twirling.  Most days, I find these adorable. This week I found them annoying. I found them a harsh, fluorescent spotlight on the fact that Willow is not only delayed compared to her typical peers but also compared to her peers with Down syndrome.  For Nella, Down syndrome seems just like a word on a paper.  Her delays have been slight, and she has had almost no medical problems.  For Willow, Down syndrome has been the thing that has affected pretty much every organ system in her body: eyes, ears, brain, heart, GI, and musculoskeletal.  It is the thing that has affected her development and made learning each and every thing an obstacle.  Every milestone is an obstacle that is overcome by therapy and our work and repetition. Nothing she has learned has been learned easily or without effort or intention.  We go to Down syndrome clinic and hear that her tone is low even for a kid with Down syndrome, and those words stick.  Her gross motor delays are severe, even for a kid with Down syndrome.  They predict she will walk around four years old, which is the the later range of what is considered normal. We smile and act like it doesn't matter, but sometimes I feels like it does.

 I have utilized social media much more since Willow was born as a way of connecting with other moms of children with special needs. It was really a lifeline in my first year and has been for many times since then.  It has helped at times when I cannot sleep because of the worry, and I send out a cry.  I get immediate responses back of I know how you feel and I feel that way too followed by advice on what to do.  I am able to share the guilt over feeling like I am not doing enough.   They understand the worries that come along with the stories about high functioning individuals with Down syndrome.  Because if there are high functioning individuals with Down syndrome, there also has to be low functioning.  I hate those terms.

I say all of that not so you would feel sorry for us or to whine and complain. Our lives are very full and a combination of beautiful and messy, effortless and hard, just like most people.  There are so many people out there dealing with harder things: death, cancer, mental illness.  So if I sound ungrateful for my life, forgive me.  I say these things in case someone out there feels these same things and thinks they are alone. You are not.  I also say them, because it helps me to speak my fears and worries out loud or write them down. They seem to have less power after that.  I also try to remember that I will not feel like this every day.  I speak it.  Sometimes cry about it or yell about it.  I tell a trusted friend.  I give myself a moment to feel it, whatever that fear or tough reality is.  But only for a moment.  Then pick myself up, brush it off, and throw it away.

This is what I am doing.  I have felt it.  I have told my trusted friends.  And now I am writing it down and moving on.  The best way to do that for me always will be to take a moment to remember everything I have to be thankful for.  So here goes:

This week I am thankful for the following:

1.) Willow is alive. This is one statement I should never grow tired of saying. I should never forget that this is a gift. She is a gift that could've so easily and so quickly been taken from us.  Thank you, God.

2.) Willow is happy. For all of the delays, the therapies, the doctors appointments, she is genuinely one of the happiest children I have ever met.  This happiness is what reminds me to chill out when I get all like, Am I doing enough? Why aren't you walking yet, dang it?  I am the one with the problem. She is content to learn and grow at her own pace.

3.) For every child who is mean to Willow, we know ten more that have shown us so much kindness.  Willow has three cousins who love her so much.  They try to cover for her if she is disobedient and give me the stink eye if I try to discipline her, even if it is for pulling their hair.  We have friends with children who do not seem to notice Down syndrome and who treat Willow with such gentleness.  We have parent friends who teach their children about acceptance and tolerance of others' difference.  These things do not go unnoticed.  We are thankful.

3.) I am married to a man made of more character than anyone I have ever known.  When I first met Josh, I, like many who meet him, underestimated him.  I knew he was good looking. I mean, that's a given, people. I knew he was an animal whisperer. (Remind me to tell you the story about the time he kissed a hummingbird at the zoo. True story.) And I knew he played the drums.  These things are all just at the surface.  I have since discovered a man capable of loving, serving, and leading our family so well. I could go on and on but was told early in my marriage not to brag about my husband too much or other women will hate me. So I will stop there.

4.) I am thankful for the incredible grace that I am given every day by my Savior who loves all people despite our doubts and flaws.

  

But he said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. - II Cor. 12:9