"It's the climb."

Darrell, Andrew, and I left for Orlando last Thursday with five other friends.  We bought a vacation a few years ago, thinking that Luke and Lane would be walking by then and we could all go and have a great time together.  But when it came time to take the vacation we decided to leave Luke and Lane with my mom and dad.  It was a hard decision.  I guess, ultimately, we chose to leave them because they couldn't walk yet and it would be hard to carry them everywhere, and to give Andrew some one-on-one time with us.  He hardly ever gets our undivided attention.  

When we got back home they were happy to see us, and we missed them too!  The next day I checked my FB account and I had two messages from other moms who have children with Cohen Syndrome.  One family is from Australia, and one is from North Carolina.  They have children with delayed milestones and no explanation as to why.  The girl is fifteen who just got a diagnosis in April 2009, and the boy is five, and he got his diagnosis in February 2009.  I read their stories which were different yet very similar to each other and to mine.    

In the past seven months I have met several families who have children with CS, and there is always one constant component that I get from their stories; they are in motion.  Whether they were speaking of pre- or post diagnosis, they keep moving forward.  We all have goals and dreams for our children, and some of those milestones and dreams may never be met, however, we all seem to know that we cannot remain stationary.  The key is to CHOOSE to keep moving on, moving forward.  Every day is special, even the ones where there was no breakthrough.  Our memories will not begin when a goal, or a dream is realized, or when a prayer is answered, we will also remember the heartache, and the days our faith was tested, and what we choose to do on those days will be in our hearts forever, and will show in our lives and in our children's lives.  

The title of this blog comes from a teenager, Miley Cyrus, her song is powerful and true.  I am sure you have heard it before.

"It's the Climb."

I can almost see it

That dream I'm dreaming but

There's a voice inside my head sayin'

You'll never reach it,

Every step I'm taking

Every move I make feels

Lost with no direction

My faith is shaking but I

Got to keep trying

Got to keep my head held high

Chorus - There's always going to be another mountain

I'm always going to want to make it move

Always going to be an uphill battle

Sometimes I'm gonna have to lose

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb

The struggles I'm facing 

The chances I'm taking

Sometimes might knock me down but

No I'm not breaking

I may not know it

But these are the moments that

I'm gonna remember most yeah

Just got to keep going

And I, I got to be strong 

Just keep pushing on, cause

-Chorus-

Keep on moving, keep climbing, 

Keep the faith

It's all about the climb

Keep the faith, keep your faith

Miley Cyrus - The Climb lyrics | LyricsMode.com

Milestone Newsflash!

I have some awesome news.  This past week Luke has been working really really hard, and he has been pulling himself up to a standing position!  This is HUGE!  Sometimes he can't get his feet quite right, and he stands on the tops of them, which will tell you just how flexible his joints are at times.  But for the most part, he has been doing a great job!  Once standing, he will look over at you and smile, and babble to show you how proud he is of himself.  He still needs help getting back down, but that is okay.  We are so happy!  :)  

When the "Esther Study" began at our church about a month ago, one of my prayer requests was for Luke and Lane to stand and walk.  Thank you my Lord!  How awesome is that?!

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.

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.

Still crushed.

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.

 

Introduction to my kids.

Andrew is my "Towb."  When I went into labour with Andrew we called my mother-in-law who was studying for her Sunday school class, and in her lesson she felt like God was telling her this grandson was "towb."  

The Hebrew root word of towb means to be good, beneficial, well, pleasing, pleasant, favorable, fair, cheerful, happy, comfortable, right, fruitful, precious, prosperity, fine, glad. Paul gives the best definition of towb in Philippians 4:8: "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable..." 

Andrew is not perfect by any means but surprisingly this little message of "towb,"  has stuck and seems to describe him rather well.   He is my oldest, five years old.  He is very smart, and outgoing.  Andrew has a way to make you really think, and wonder just what is going through that little head of his, he amazes me all the time.  He is hilarious to say the least.  He makes me laugh constantly, sometimes I joke and say God gave me Andrew so I would always be entertained.  He is a very special kid.  

Luke and Lane are my twins and one, well, two of the main reasons I began this blog.  On February 13, 2006 we found out we were having twin boys!  WOW!  We were speechless.  Literally.  We were only planning to have ONE more.  Oh well, like I always say, "There ain't nothin' to it but to do it!"  Luke and Lane were born June 16, 2006, they were 3 weeks early but they were also considered full term for twins. 

They were the most pleasant babies.  I never thought I would hear them cry, so that made having twins a little easier than I would have thought.  :)

Time passed, and they were not hitting their milestones.  They were not sitting or holding their head up good. The pediatrician said, "Don't worry just yet, I believe they are behind because they are twins." Just before they were one, we went to a pulmonologist at Emory in Atlanta. He didn't even talk about Lane's breathing, he just called other doctors in and said, "This is a floppy baby." I had no clue what he was talking about. He said they had low tone and needed physical therapy. So we started the therapy. At twelve months they could hold their head up good, but they could not sit alone. They would not bear weight on their feet, much less stand. They were not crawling at all. 

I knew something was not quiet right. Everyone around me was saying, "Don't worry they'll catch up." But I knew they were not exactly like other kids. 

We got a call from the pulmonologist and he referred us to a neurologist. Many tests were done. We ruled out a lot of things. One chromosome test took 10 months to get back and it pretty much told us that they were "all boy." (Thanks! Like we didn't already know that!) I was pretty mad about that, they doctor explained to me this would show any genetic problems they may have. So I believe she ordered the wrong test. 

They we were referred to a genetic doctor at Emory Genetics in Atlanta. He decided to do a metabolic study on one of them and a DNA Micro Array analysis test on the other. Eight weeks later Erin (genetic counselor) called and said, "Luke has a 'tiny' deletion in a gene commonly known as the CoHN1 gene. And because of their physical and mental qualities I believe this may just be your answer. But we will have to conduct one more test and send it to Maryland to be totally positive."

So of course I look it up on the Internet, read everything I can find. Try to find someone who is going through the same thing. "Cohen syndrome..........Cohen syndrome." What does this mean for my two little guys? Should my husband and I tell everybody we have a diagnosis? Or do we say, "We have an answer now, it explains their developmental delay." And just leave it at that.... My problem is this, I don't want to put labels on them. We don't know just how mild or moderate this tiny deletion is yet. 

So that is where we are today (Sept. '08).   We will go to the doctor next week so send their blood off to Maryland and I think it takes about twelve weeks to get it back.

I believe the sky is the limit for Luke and Lane and I want to do what is going to benefit them the most. 

Update: February 2, 2009
We got a confirmed diagnosis on both of our boys over these past few months. And we did decide to tell our family and friends (as some of you already know) because we realized that label or no label it will not change who our boys are, they are very special. And we wanted to try and help other families find a diagnosis as soon as possible, because it can go undiagnosed forever if you do not know what to look for and sometimes "who" to talk to. We hope their story will help other families in any way possible.