Emory-Planning for the future

January 15, 2009  The Diagnosis Appointment

We actually got a phone call months earlier to tell us their diagnosis.  However, our "diagnosis appointment" was in January.

Darrell went with me to Emory, and we brought Luke and Lane.  No tests would be run on them that day, but the doctor wanted to see them still.  The doctor likes to take pictures of them each visit, to help with research etc.  Luke and Lane know when they are at the doctor's office now, and they don't like it too much.  But for the most part they are still their happy little selves, just a little more quiet and shy.   

We knew what they would tell us, that the tests were positive for Cohen Syndrome.  I kept wondering why they still wanted us to come, since we already knew the conclusion to all the previous tests.  

The genetic counselor came in and talked with us for a while.  She explained to Darrell what Cohen Syndrome was, and different scenarios of how they think Luke and Lane had deleted and mutated genes, which causes CS.  Then we told her the improvements that the boys have made since our last visit.  I figured we were about to leave, but the counselor said the doctor wanted to see us, so we waited.

The doctor came in, he is a short, happy, smart-looking guy.   A real pleasure to be around.  He looked over the boys, and was glad to see them.  And he was pleased at the progress they had made.  He sat down in his chair and pulled closer to us, and then he said,  "Well guys, do you have any questions?"  As if he was expecting us to, but also as if he was certain we would not ask the most appropriate one.  I don't know, I just had a hunch.  

I looked at Darrell, and he looked at me, that was my cue.  "Uh~Yes, I do.  So, do you think they will ever be able to sustain a life on their own?"

"Uh~um."  When the doctor is thinking he always says "Um," a lot, it doesn't necessarily mean something bad.  I learned that early with this doctor.  He continues, "Um, well let's put it this way, Mrs. Brown, I have heard of Cohen Syndrome patients living on their own, however their diagnosis was probably not a result of a genetic test.  They were probably misdiagnosed.  Having said that, it is hard to tell, you never know what someone will be capable of doing.   Do I personally think they will live on their own, no I do not think so.  Now that does not mean they will have to live with you or some other member of the family.  They could live next door for example, well that is, if they develop to that point.  You know, you could live close enough to check on them everyday.  This is most likely your best case scenario, Mrs. Brown.   Good question."

Yea, that is what I thought.  Darrell and I had already been planning a "mother-in-law" suite out back for the boys, when the time came.  (Darrell had to leave the room, they wanted a blood sample from him.)  So I am thinking in regards to planning, I am ahead on things.  Wrong.

"Any more questions?" 

"No, I guess not," I said.

And then he proceeded to tell me what else I needed to know.  "Mrs. Brown, do you have life insurance? "

"Yes."

"Good, well you and your husband need to think about raising it.  Should you both die, whoever is chosen to take care of Luke and Lane will need money to do so with.  Believe me you do not want them to rely on the government to take care of them.  They could be put in a home, which isn't always bad, but I have heard horror stories.  My intent is not to scare you, but to let you know the time to prepare for their future is right now.  Do not wait."

Well I had kind of thought about that before, but not in that much detail.  He is right.  "Thank you doctor, I am glad you opened my eyes."

And just when I thought he was finished he said, "Uh-Mrs. Brown, do you and your husband have a Will?"

"No, not really.  We drafted one a few years ago..."  

"Well you really need to do that, if you don't do anything else.  You need to be specific what your wishes are with your children, should something happen to the both of you.  It is different when you also have special needs children, trust me."

What does that mean, oh, I guess he is suggesting that because Luke and Lane have special needs, it may be harder to find someone who is willing to take care of them.  "Okay, we will do that soon."

And then Darrell comes back in the room, and the doctor is making our next appointment one year away.  He thanks, us and we leave.  I was glad the doctor didn't just give us a phone call and not have us come in, he really was a blessing.

We are driving home, and I begin to tell Darrell what all the doctor had advised us to accomplish, soon.  "Yea, I agree, those are all important things for us to do for Luke and Lane, and Andrew," Darrell said.  So we knew what we had to do, work.  Get it done, not sit back and watch years go by without addressing the issue.  

I tell you this story because I believe with all my heart that God will take care of His babies, but I also know that you have to sometimes "make it happen."  I am not saying that "making it happen" doesn't include God, I am sure it will.  We are not supposed to worry about tomorrow, however, we are also not supposed to be lazy and irresponsible either.  I started out thinking I had it covered, I knew Luke and Lane would live with us, and we would try to make them feel as comfortable as possible in a house beside ours.  But I didn't really think about what would happen to them when we were gone.  So, Darrell and I have vowed to try our best to prepare the way for them to have a promising future, and we trust that God will appoint someone to help them when we are gone.