My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Tuesday, June 1, 2010

The Tuesday After

Twenty Years Joyce

When you're in the hospital, all you can think about is getting home. After a few days of intense stress trying to figure out how we were going to pay for the necessary equipment to come home, we were discharged. I felt euphoric driving home with Sarah. No more nights resting on the uncomfortable pull out bed, no more middle of the night vital checks by nurses with flashlights, no more fattening cafeteria food and no more expensive parking fees. Most of all, we are all back sleeping together. Our little family of four in one place. It was such a relief.

Yet that first night, I was a nervous wreck. Each time Sarah moved, the alarm monitoring her heart would go off. Each tiny little grunt she made, I jumped up to make sure the trach wasn't plugged. When she cried, her face contorted and her checks got red, yet no sound came from her mouth. That frightened me.

Inside I was a bundle of nerves. Yet, you would probably never know it. My outside veneer was solid as granite. I presented as though I was totally in control. Of course I wasn't. There were cracks starting to surface. My snapping at the social worker for one. I called her a few days later to apologize. Being a social worker myself, I know that parental agitation from undue stress goes with the territory. Still, I was sorry for my actions. I am of the philosophy it is never right to be mean or cruel to another human being. I really tried to show my appreciation as often as I could to all the folks who worked at the hospital. From the doctors, to the nurses, to the various therapists and especially the crew that cleaned our room each morning.

But now we were home.

Sarah was content. You could tell she was happy to be back in her own room. She was eating better, likely to gain a little much needed weight, and more playful. For that, I was grateful.

She did not seem to be bothered in the slightest to have the trach tube in her neck. She never tried to pull it out. She was such a good little girl as we struggled at first to maintain it.

Being wire and tube free again, gave her the ability to rediscover her toes. She would do this by the hour. And I was content just watching her. I was especially relieved that we had the long Memorial Day weekend to regroup.
John and I rearranged her room to accommodate all the new equipment that was necessary for her care. I quickly made a cover for the ugly green oxygen tank that stood five feet high to match Sarah's bedding. It also gave us a chance to get our groove in place.
We knew the morning after the holiday, we were entering new territory. I was leaving for work bright and early and John was staying home to take care of Sarah. Over the years I had joked about role reversal, even written college essays about the subject, but never did I truly expect for it to be playing out in real life. My life. Yet, that was exactly what was happening. I was bringing home the bacon while John was assuming the title of Mr. Mom.
It doesn't seem like such a big deal as I write about it. Yet, I can recall many unhappy observers. Some were quiet about it, some not so quiet, and some just down right nasty and cruel. And you would be surprised at who some of the folks were that fell into that last category. But we marched on. It was simple actually. I was carrying the health insurance with my employer and John had been given a really hard time at his employer during Sarah's lengthy hospital stay. Plus he was more than capable of taking care of Sarah and he has much greater patience than I. He was content with the philosophy of slow and steady wins the race and Sarah had already showed us that is what she needed if she was going to survive. It seemed like the perfect arrangement for our situation.
Yet when Tuesday morning came, it was so hard. Hard to get up. Hard to get dressed. Hard to get into the car. I wanted to stay home and hold her all day. Just look into her eyes and tell her I loved her. I wanted to see her morning smiles. I wanted to feed her and change her diapers. I wanted to be the one to suction her trach when it was time. I wanted to monitor her oxygen saturation's and adjust the tank if necessary. The funny thing is, I did not have any problem taking her to daycare the first morning after my maternity leave. But that was before. Before we knew she had a heart defect. Before her surgery. Before she stopped breathing in my arms. The difference on this Tuesday after, I had a glimpse of what life could be. Without my precious Sarah.


Heather said...

Look at your sweet Sarah.. so cute sucking on her toes.

Sarah is such a miracle and you Joyce, are one amazing mom.

Slow and steady indeed.Has seen me through these difficult first 3 years.I heard myself in some of your words.Especially after we brought Zoey home after her first 3 months of life in the hospital.So ready until i walked in the front door.Without Mark,as he couldn't take off anymore work.2 little boys tugging at my legs and the machines.Beeping,alarming,feeding pump not working ... I broke down at one point and said I wanted to go back to the hospital.In a weird way,it felt easier.

Here we both are.Years later.You a few more than I,but I pray daily that I can stand where you are one day and do a retro 20 year post.

Love to you both.

Adelaide Dupont said...

I hope so too, Heather and all the other parents.

Let's make these next 20 years great! All of us.

WOW! to see Sarah in love with her toes, and the recounting of Memorial Day when the family of four was together again.

~ Teresa ~ said...

Look at how cute of a babay you were Sarah!

Anonymous said...

Sarah are you the cutest or what? Joyce- I know that us Social Workers always have the urge to take care but we are people too, who need to be grouchy etc- gives us more perspective towards others I think. Anyway- You've done a marvelous job and I still can't see the cracks :) It's amazing how resilient kids are isn't it? Altho my girl still gets a little small tightening of the face when I talk about her heart :(
Oh and bravo to your hubby!

Rochelle said...

That is so cool Sarah had daddy time early on. Love her baby pictures and those toes you could just eat them up!

Lacey said...

Look at her, so cute. Jax is so good with his trach. He puts his hands up by it, but he never pulls. Although he doesn't have a grab reflex so he doesn't grab anything. Still, its nice that he leaves it alone!

Molly said...

I was hoping you could help find someone to host this boy and his mother

details here:

I think this is your neck of the woods right?

and those pictures of Sarah are SO precious! She was (and still is) such a cutie pie!

Cammie Heflin said...

Sarah is so darn cute! I love it when babies play with their toes! I am now trying to take the slow and steady route with Addy too. I am so tired of being asked "Is she walking yet?" I have decided that Addy will walk when she's ready. I think I'm ready, but I will rethink that when I am chasing her! I am so inspired by Sarah stories, we love you!

Ellen said...

This is so beautifully said, Joyce. It is amazing to think of how far both of you have come. And Sarah was such a little yummy baby!!!

Tiffany said...

I am officially all caught up on your blog from the past few days, Sarah and Joyce! I love reading it every day...I love seeing pictures of Sarah when she was little and now all grown up!! She is a miracle and Joyce, you are an inspiring mom!!

P.S. I loved the post about Mr. K and your crush!!