Until 4 am.
Tuesday, March 12
Tommy is sick. Poor little guy. And it's a mean tummy bug.
But of course I find a bit of parenting humor in the past 24 hours.
Tommy doesn't "understand" how to "get sick". And by "get sick"... well, I would say "vomit" here, but that would be gross, right?
So about 1am when he climbed into our bed, I heard him cough.
And thought to myself, that's weird.... he hasn't had a cold/cough for a week.
So when he coughed next, I quickly recognized he was coughing to try to "get sick".
But it wasn't working.
Now I'm going to share with you that I have a slight gag reflex.
The operative word there is slight.
Friends have said "hair trigger" like. Just because you've always wanted to know that about me, right?
Tommy just couldn't complete the task of "getting sick".
And as much as he coughed, his tummy rumbled more and as I stared at him and thought..... I needed to "show him" how to get sick.
We model behavior and tasks for him all the time at home.
Surely, WE needed to model "how to get sick".
And I was confident he would mimick the behavior and be able to vomit.
So, I chose the WE in the equation..... to be Colin. So I woke him up.
Shy grin. Bad, bad wife.
Refer back to my slight gag reflex.
So Colin started "modeling" the task of vomiting at 1am to Tommy.
You really cannot plan for events like this and prerecord on the ipad. lol.
And I'm sitting next to Tommy on the bed, because that's what a mom is suppose to do, right?
Rub the child's back, speak words of encouragement...... and I hear Colin doing his "live movie like reanactment of vomitting"..... and of course, I do too.
Absolutely worthless am I.
Colin was the best actor and surely the Academy Awards missed his nomination. He is such a peach!
And when I finally got a grip. It took awhile, trust me.
So Colin and I are the parents modeling the behavior of vomiting to our child with special needs and whether it was our performance....
or because we were all tired....
Tommy got sick.
And didn't stop.
Until 4 am.
Like all good supporting actors, I let the lead "take the night off" and go to sleep while I carried the show.
His upside down clown smile thru the darkness of the bedroom spoke volumes.
And I'll let the Academy know of our fine performance.
Your supporting actors. Dad and mom. Getting our green ready for St Paddy's day while we got to play with our nephews and niece at my sister's house this weekend. Like any dynamic duo, Colin and I couldn't get far in life without each other. I'm sure if we were giving an Academy Award speech for our modeling how to get sick, well, the speech would be short and sweet. It takes two!
Other supporting cast for the Academy Awards would be strange pictures from my phone.
We celebrated Nate's 18th birthday at our local mexican restaurant and I accidentally took this picture before Hannah and Nate were "ready".
We all couldn't stop laughing, it looks like some kinda mexican mafia pic.
And this would be a contender for an award too. Nate was actually looking at the people singing, and I meant to get a picture of him and Liam, but got the waitress oddly behind him who was waiting.... just an odd picture. Because I'm odd. And I love to laugh.
Monday, March 11
"Now there is a final reason I think that Jesus says, 'Love your enemies'.
It is this: that love has within it has a redemptive power.
And there is a power there that eventually transforms individuals.
Just keep being friendly to that person.
Just keep loving them, and they can’t stand it too long. .....
the power of your love ...they will break down under the load.
That’s love, you see.
It is redemptive, and this is why Jesus says LOVE.
There’s something about love that builds up and is creative.”
So I've had this 'draft' post written in my blogger cloud (I sound like I know what I'm talking about there, but I really don't have any tech skills) for three months. Sometimes I've added my thoughts. Mostly, I've deleted tons of words. And almost hit the delete button tonight and erased it.
But then I wanted to share some thoughts on the confusing word of "redemption". Since it's lent and all. And since the Easter story is such an amazing, powerful and beautiful story of redemption. For you. And for me. And because tonight we had a family dinner, even picked Hannah up from the dorm, and then watched our first recording of the History Channel "The Bible".
Redemption is loving someone. Even someone who you cannot stand any of their behaviors or actions. The hardest ones to love are the ones that need the redeeming power of love. I always thought that going to church and doing good things would bring me redemption. But it was like a "end of life" kinda redemption. The past six years have really opened my eyes to exactly what I believe and more importantly feel daily as redemption. I've lived thru pain and suffering and enjoyed sheer joy and long periods of happiness. I've lived a life, I guess, these past six years. One filled with every aspect of humanity. And the love within those days has been redemptive.
Redemption was found on a summer day visiting my daughter inpatient recovery in eastern washington. I never lost my love for my daughter, not for a moment, but what I never could say before that summer day is that I loved an alcoholic or an addict. In fact, I really avoided those people all my life. "Those people". Mentally ill. Substance abusers. But on a hot summer day that turned into a cool evening, I was sitting in a room talking to a group of girls. Hearing their testimony. I loved a 14 year old girl detoxing from a heroin and meth addiction. I loved another girl, my own daughter, as she shared her testimony of social drinking turned to alcoholism quickly. And I loved still another girl, my daughters age, who would struggle the most with recovery and end her childhood in a half way house. While all were sick and struggling toward recovery, love was redemption for them and for me.
Redemption is adoption. Saving an orphan. My friend Ruth is one of the most self-less people I have ever met. Adoption is the gospel alive and in your home! She is adopting a child with Down syndrome from eastern europe. That is one sweet face of redemption!
Redemption is the staff in my son's life skills classroom. Para educators, OT, SLP, and a teacher in life skills and one in general education... all gifted beyond where most of our minds and hearts daily exist. People that love on my son and provide an educational setting that is safe, nurturing and meets him where he is academically. And in the process, they struggle with being exhausted mentally, physically and spiritually. Dostoevsky said, "Love in action is a harsh and dreadful thing compared with love in dreams. Love in dreams is greedy for immediate action, rapidly performed and in the sight of all..... but active love is labor and fortitude".
"On earth as it is in heaven", that part of the Lord's Prayer makes me smile with the hope and the promise that it implies. The desire to be "christ like" to be the "arms and legs of Jesus" doing God's will on earth. Witnessing to the power of redemption in whatever simple ways it shows itself. Testifying to the power of giving grace to others and allowing them to live a lifetime thru hope and faith. Love gives and gives and gives. "On earth as it is in heaven" means not merely the gratification of being loved—but the blessing of loving others. Redemption is to give the best of one's life for others.
Loving my husband and my family, tries my patience lol, and redeems me daily. During nightly devotions with son Liam, my mind races around silently and wishes for the morning because I remember all my short comings of the day, when I was rude, when I wasn't patient.... and I cannot wait until getting another 'blank slate' that comes with the morning. Another fresh start. God redeems our heart thru forgiveness and a new start each day.
Redemption is not being a bystander but an active participant of life. Hundreds of hours of volunteer time each year goes to a few of my favorite organizations, I can honestly say that I'm selfish about giving myself thru volunteering my skills and heart. The love just goes on and on and on. The people I have met these past six years have been so inspirational. I get far more out of volunteering than I feel like I every give to an organization. Love thru volunteering is redeeming. But it's not the "act of volunteering" that is redeeming, it's the relationships and community it builds. It's the love that is.
The world may not have changed dramatically with the action of love. But those people that you touched by your love will have THEIR world changed. Break the loaves of bread, pass the cups, put your love into action. Redemption will be found here on earth. Make heaven on earth, He wants YOU to. And remember what Dostoevsky said, it's going to be harsh and dreadful at times. It will take actions pushing past your comfy zone. But do it anyway.
Saturday, March 2
Grab your tissues.
I know I did.
At the last Down syndrome outreach meeting we heard that the Sprout Film Festival was once again coming to Bellingham courtesy of the Arc and great sponsors locally. Prepare the popcorn! The Sprout film festival is an amazing collection of beautiful and inspiring short movies made by and about people with developmental disabilities. Their families. Their teachers and communities. It is just an amazing glimpse at movies made about humanity. So I was thrilled it was coming back this year! Information for this year's event is at the very bottom of this post.
I remember last year, Colin and I had plans for 'date night' at the 1st annual Sprout Film Festival. But plans changed and he needed to stay home with our boy wonder (Tommy), so I took Nate for the gala event that evening and enjoyed yummy foods, lots of familiar faces and amazing movies.
Movies that inspired my mind. Like this one that I just saw on their website:
Stories that ripped my heart out of my chest and made tears stream from my eyes. Like ugly cry kinda movies that were so emotionally touching.
A story similar to ours but beautifully unique is "Distinctively". Another one I found on their website:
And if you ever get a chance to watch "The Eighth Day", well, invite me over. I'll bring my own box of tissues. Gee whiz I love that movie.
But the most touching movie for Nate and I was one based on conversations with siblings. About what it was like growing up with a brother or sister that is disabled. The good, the great, the bad and well.... the really really ugly.
I wasn't expecting to see a movie with such raw emotions about the sibling experience. I like to pretend in my own little world that family life is peachy. Just peachy. And that Tommy's sister and brothers are just "fine" with who he is. Just fine. Well, life is a bit more complicated than that. More involved than simple and clear emotions of just fine.
So on the drive home, once the fabulous movie night was over (there were LOTS of great shorts to watch), I asked Nate about his sibling experience. And he quietly shared. And although there were a lot of specifics and feelings and thoughts... in the end he felt he was better, more whole, more in tune with himself for having Tommy as a brother. Yes he remembers tight financial times as we watched all of our savings depleted with hospital stays the first year. But as a family, we all remember the reason, we lost just about everything so our son, their brother, would have a lifetime. Nate doesn't really recognize disabilities in people, even today, he will correct me when I get anxious and excited about seeing someone employed at the grocery store with a disability. Mom, they are no different and don't want your smiles. And Nate volunteers time at the Buddy Walk and for various events by the Arc. Humanity is just that, an all human event.
So I asked Hannah recently what her experience was like with Tommy as a brother. If I was more artistic I would do more than cut and paste from my email into here. But I'm not artistic. So here it is :)
"There are many ups and downs of being a sibling to a child with Down syndrome. I am an older sister to a brother who has down syndrome, he is six years now, but I was 12 when he was born. As you can tell, being a pre-teen (at12) and having a new member of the family being born is not an easy thing in the first place! None the less having this family member be born a little bit different than what you were expecting. Having a sibling with Down syndrome requires more care, more protection, more help, more staying at home, more explaining to friends, etc than you would do with a normal child. To most, this sounds like such a burden, especially with all the surgeries and special care that Tommy received at first. It was a shock to hold my normal healthy baby brother Liam (who was the twin to Tommy), and then hold my brother with Ds who had tubes coming out all ends of his small little body! I was scared, not only for this little boy's life that I barely knew and I had already grown so in love with, but for his future in my life as well. How was I going to explain this to my friends, and what if people made fun of him? The truth is, people understand, siblings with disabilities are more common than you think, and people are very accepting. And those who aren't, aren't people that you should want to surround yourself with anyways. And the people that make fun of people with disabilities are people that I have found to be very sick and lacking a great deal of understanding. Having a developmental disability does not make you lifeless, needy, or time consuming, instead...... look at it as a person with a developmental disability often gives life lessons to those who are not disabled. They are the most loving and giving people, and they are helpful unique individuals! Having a sibling with Ds has taught me to be patient and accepting of others, sometimes they are the ones who have the most to teach you."
Last but not least in the sibling line up is Tommy's younger twin by 12 minutes Liam. Oh my goodness is he sweet and kind. And a recent event reminded me how close Liam's heart is to Tommy. At school they celebrated the "100th" day of school. All the typical fun activities. Count to 100, name 100 things you like, describe 100 things you don't like. Well, the teacher sent home a sheet where she had asked the students "If you could have 100 more of anything in the world, what would it be?" And Liam wrote in big letters "Tommy's". Yep. He would choose to have 100 more Tommy's. Truth is, I would too. Pass the box of tissues, it makes me tear up even now.
Pretty cool people they all are. Four of the best kids in the world. In a family that is so human and on a path so evident to everyone.
There was a study published in the American Journal of Medical Genetics in October 2011 on "Having a son or daughter with Down syndrome: Perspectives from mothers and fathers". I had read it with great interest because so often new families ask for perspective, advice, thoughts, wisdom as I'm only a few years farther along a similar path than them. All I can seem to muster is "I wouldn't change a single thing". Not him, not us, not any of the events that now make up our life. It's perfect. Perfectly us.
But in the article they support many of the same feeling that Tommy's siblings have. Each milestone is a thrilling occurrence. You will learn a new kind of patience, it's more like perseverance. The researchers even noted a "Ds advantage" in that their families are described by others as warmer, closer and more harmonious. Shy grin. You just need to catch ours on a good day! Because that is NOT us on plenty of days.
Tommy has three wonderful siblings to help him during his lifetime.
But all three believe that HE will help them more.
If you are a parent and want your family to enjoy fun events, especially some "sibling" special activities, you can find events here: Parent 2 Parent Whatcom County
Sprout Film Festival is Tuesday April 23rd. Screenings will be at 10:00am, 1:00pm and 6:30pm. The morning screenings will be free to the public. The evening program will include a fun reception with delicious appetizers, desserts and opportunities to win prizes. Tickets will be $20 for members of the Arc or the Pickford and $25 for non-members. Tickets will be available the first week of April: www.pickfordfilmcenter.com. For more information, contact Amy at The Arc: (360) 715-0170 ext.309, firstname.lastname@example.org.
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