Life before 2008 20 Jan 2007 11:02 am
The Space Between
When I did I first suspect Rowan had Down’s Syndrome? He was three days old and I was shooting his photo for his birth announcement. Some of you got the black and white picture of him lying on a white fleece. There was this moment in the sun….I wondered if it was shadow. Many times over the past two years I’ve had this secret wondering. Sometimes it’s in the middle of the night as he nurses. Sometimes it’s when my camera catches a look we miss in full action.
He’s different than my other kids in every way, in more ways than children are simply individuals. From his pregnancy, delivery, the feel of him in my arms. His intensity. The way he spins in circles over and over, not like “gee mom this is fun!” but just different somehow. The way he’s never once slept longer than 4 hours at a time. His late crawling, standing, walking, and now talking. His early wellbaby checks didn’t go over anything unusual and then we moved. He’s been healthy and I was behind in check ups and then I started procrastinating, knowing he was delayed but not wanting to “go there”.
Last year I didn’t develop any film, though I took many pictures. At the end of the year I got a little digital cam that I used. It’s easy to shrug off an “odd look” on a cheap camera that can’t take a good action shot. I did it a few times. Last week I brought in a bunch of rolls to Walmart to get them developed and then the day came this week when I was on the phone with my sister, casually going over photos from last fall.
Rowan’s hair was still long, with bangs cut straight across. One reason that I cut it as short as I did soon after this photo was taken was to lessen the look I was getting that was making me a bit more and more uneasy. But I nearly dropped the stack of photos when I came to this.
It was the day I had to stop pretending. I had to vocalize for the first time what I’d wondered for so long. Even David didn’t know I thought this. When someone suggested to him last summer that something might be “wrong” with Rowan because he didn’t act like the other babies in church, we responded with laughter and quiet resentment. I wanted to stay in the land where we just relax and wait for him to catch up, like so many well-meaning mothers say. “Our boy didn’t talk for a long time either. It’s just boys. Don’t worry.”
But at the same age, when I knew I couldn’t wait any longer to find out why Wheaton wasn’t talking, the pediatrician scolded me and the speech therapist told me he was deaf. My mother-gut was screaming at me by now. Time to listen. Time to act.
Rather than head off to an Early Intervention appointment for a speech eval I decided to go to the doctor first to make sure it wasn’t physiological. We drove an hour and a half away to doctors I trust in our old town, hoping they’d just be kind of dismissive and tell me not to worry, that kids all progress at different rates. Instead, within minutes, they had a plan of action.
Next week we’ll go to the geneticists at UT for chromosome testing. They’ll direct most of the action from there. But also we’ll have extensive hearing testing (with Wheaton’s doc), possibly eyes, and they’ll line up the stuff for the EIP speech stuff. The suspicion is Mosaic Down’s, something I don’t know that much about but it’s different than typical Trisomy 21. Google it for more info. All I can manage right now is to spit out what I’ve said a few other times in the last 24 hours.
I don’t think I’m spinning as much from the potential of what this means from a medical standpoint. That much seems kind of easy in the face of what other stuff we’ve been through. But it’s the mechanics of it that have me wigged out today. The appointments, the driving, the waiting for results while huge questions hang in the distance between. The way so much of life gets pushed aside. The siblings who have be more flexible than I’d wish for childhoods that I pray could be just a little more innocent. Yes, the expense. The repetition of explanations.
Better this stuff happens on a Monday you know? Lots of stuff to be done in a week, lots that can be done. Hearing it on a Friday means the world goes on while we sit sort of shell-shocked and with not enough structure and urgency to throw ourselves into work to get through it. Tempers flare, reflexes are jumpy, denial tempts.
Which is where I am now. I’ve got work to be done but just a little. The kids are loud and we feel like we are anxiously racing but with no destination in sight. Maybe he’s just a little slow. Maybe it’s like cat scratch disease when someone else suggested cancer. Maybe it’s extra amniotic fluid instead of only 2 heart chambers. Maybe he’s just built small instead of slowly starving to death.
I’ve been here before, waiting in between two very large realities. It will be awhile before we know where we’ll end up.
on 20 Jan 2007 at 12:56 pm 1.Sandy said …
((Tia))
May you feel God’s grace in abundance during this “in between” time. I’ll be praying for peace, hope, strength, comfort and love for you and your family during the days ahead.
Love,
Sandy
on 20 Jan 2007 at 2:05 pm 2.Susan said …
(((TIA))) I hear you. This is a hard place. Thank you sharing more. Amazing that the word “Mosaic” was already on your mind. You are in my heart.
Susan
on 20 Jan 2007 at 3:14 pm 3.gina said …
Oh my- this is a biggy. I’ll be praying for you guys.
on 20 Jan 2007 at 5:53 pm 4.Bannergranny said …
I pray that this “space” will be a short one….it is so hard to wait, and harder still that I cannot be with you. But God has his hands all over you, and even more all over Rowan and I KNOW that He will not fail you in whatever you need at the moment you need it. If my love and prayers were snowflakes you’d be in a blizzard of love and snowed in. And don’t worry about the effect this will have on the other sibs…your children have been taught to love and accept others no matter what….and they will rise up to whatever challenge they are faced with….Rowan couldn’t have better sibs.
on 20 Jan 2007 at 7:47 pm 5.Steve said …
“The siblings who have be more flexible than I’d wish for childhoods that I pray could be just a little more innocent.”
I pray for all of you guys, but especially the kids. I pray God’s love can be seen and that they end up more loving, more accepting, more patient.
on 20 Jan 2007 at 7:52 pm 6.Sheila Conner said …
I know this has to be hard for you. I’m glad I pulled your name up on Susan’s blog. My heart and prayers are with you and your family over the next few days–much grace, much love, much peace. Like was written above–a blizzard of love.
on 20 Jan 2007 at 10:12 pm 7.Carrie said …
If Mosaic Down syndrome is Rowan’s diagnosis, I know you will be an expert on it in no time. You are an amazing person, Tia. Your strength, character, passion, and determination to do the best for your family is inspiring. I know you all have been through so much with health issues. I can’t imagine going through yet another difficult situation. I am praying for you and your family.
Carrie
on 20 Jan 2007 at 10:13 pm 8.Cathy said …
hugs to you and prayers for God to go before you, leading you to the right resources, giving wisdom for decisions to be made.
on 20 Jan 2007 at 10:37 pm 9.MistyK said …
Tia, dear. . .I feel absolutely ill-equipped to say anything right now. I’m in tears, and so sorry you’re in that horrible limbo-state that drives all mothers batty whenever we’re forced to “live” there for even a moment. Carrie is absolutely right; you’re a fabulous and intelligent mother and I know you all will do the best that can possibly be done regardless of what the final diagnosis is. He’s a gorgeous pumpkin and I pray you feel God’s arms holding you up as you walk through this. Please know you can “vent” with me whenever you need to.
Love you much,
Misty
on 21 Jan 2007 at 12:12 am 10.Queenofthehill said …
Oh Tia!
I’ve been there myself, having to wait and to watch and feeling completely powerless. Just know that you won’t be waiting and watching alone.
Much love,
Queen
on 21 Jan 2007 at 5:18 am 11.Beth said …
Thinking of you tonight, while up with insomnia. Wondering if you’re up too, thinking about it all. My heart really goes out to you. The space between is so hard, but really it’s like the Thin Place, you know? Hope it will be that for you.
Love, Beth
on 21 Jan 2007 at 4:45 pm 12.Tia said …
Thank you everyone for your love and prayers. It is the reason I went ahead and shared the waiting time; this kind of support really does help one get through it. Blessings to you all.
on 22 Jan 2007 at 8:10 pm 13.Ampersand said …
Tia…sorry to be one of the last ones getting here to post my own love, encouragement, and support.
I don’t know all the history, but it sounds as if you all have been through so much.
I do so hope the in between time and space is measured with grace and love and courage. And I know that you know just where to go to get that.
You’ll be on my mind.
Love,
Kim
on 24 Jan 2007 at 5:08 pm 14.Kim said …
Hi Tia! With our youngest children being so close in age, it’s definitely not hard for me to imagine the place you’re in now. I hope everything turns out, if not right, then at least settled. If it becomes settled in your mind and heart, then you can move forward with the best plan of action. Take care, friend. You can still find me at my old email. I’ll be headed across the mountain soon too, and I’ll send good vibes your way.