Wednesday, February 4, 2009
Now that we have a diagnosis, what comes next?
You know, it's funny how you can imagine the way you would act or feel once you finally get a diagnosis for your kids, but you never quite know until you look back on it.
Well the first thing I did was call my husband and tell him. Then there was this silence in the air that made everything perfectly still. What do I say? What do I do now? I look at Luke and Lane, they are smiling and playing like always. Somehow we end the phone call.
"Cohen Syndrome," I said. They don't know. When will they know? When will they understand? I know A LOT about it, I researched it for hours. And I talked to families who have children with Cohen. I see their future in little snapshots racing by. But it is not how I imagined it at all. From the time I knew we were having twin boys, I thought, "WOW! Three boys, they will get to be on the same baseball team some years! All three of them! This is so exciting!" I talked to Darrell about it, and he said, "Yea, I will always have fishing and hunting buddies too!"
Everything was changing, plans, priorities, feelings. Is this right? Is this what God wanted for them and for us? So many questions.
Darrell and I talk about it when he gets home. Darrell said, "All I want is for them to be able to have a family like I have, and live somewhat on their own. Is that reaching too high? You know more about this 'Cohen Syndrome' than I do."
"I don't really know for sure, but from what I have heard, no I do not really think they will live on their own, but remember anything is possible." Keep it positive, Amanda. You know that is the "right" answer.
Days go on. Friends with children who have CS call for support. "If you have any questions, please ask." But I am at a loss for words, I know I have questions, what is wrong with me? I talk to friends, and keep it positive, I know what I "should"say, and I do feel that way sometimes, but then I think about the reality of it all. Time keeps passing by, doesn't ever slow down. Not really saying much, just thinking. I am going over charts and time frames in my head; the average age to walk-2-5 years, so that means potty training will follow after that...really that long it may be 5 years or more?
And then one day, I "wake-up." I hear a laughter so genuine and infectious! I start laughing before I even know what is going on. I turn the corner, and Andrew is running down the hallway and Luke is crawling as fast as he can after him, laughing so much he has a "flat tire," and has to stop for a minute, but he keeps laughing. And then the chase is on again! I start crying and laughing! I am so excited! How could I have been so narrow-minded? These precious kids are showing me what to do. Andrew is playing chase with his little brother, and Luke is playing and looking up to his big brother just like they should. Andrew isn't worried that they are behind in their milestones, he just wants to play. He is not planning how to help Luke stand, so he can run after him. That is the way it should be.
Embrace. I knew I had to embrace this, to make it better for Luke and Lane. I also knew I still had to plan and focus on getting them to reach their milestones, but the first thing I had to do was accept all that was given to me. I thought I had already done that, but I guess I hadn't until that moment. Like I said, "You never quite know for certain what you will do in a situation until you are able to look back on it." And even though I will choose to embrace this, I will not surrender my hope for my boys.
Job 11:7-9;13-19 HOPE
7 "Can you fathom the mysteries of God?
Can you probe the limits of the Almighty?
8 They are higher than the heavens—what can you do?
They are deeper than the depths of the grave —what can you know?
9 Their measure is longer than the earth
and wider than the sea.
13 "Yet if you devote your heart to him
and stretch out your hands to him,
14 if you put away the sin that is in your hand
and allow no evil to dwell in your tent,
15 then you will lift up your face without shame;
you will stand firm and without fear.
16 You will surely forget your trouble,
recalling it only as waters gone by.
17 Life will be brighter than noonday,
and darkness will become like morning.
18 You will be secure, because there is hope;
you will look about you and take your rest in safety.
19 You will lie down, with no one to make you afraid,
and many will court your favor.
Embrace destiny. Hope still.