This diagnosis was not a surprise; we had figured the doctors would eventually give her this “label”.  It was a bit shocking to finally receive an actual diagnosis, though, and to see it  in writing - big, bold writing, I might add!  Over the last year we have learned so much about Cerebral Palsy (CP for short)  from a variety of sources.  This is some of what we have learned...

The words “Cerebral Palsy” sound very scary to many people.  I have learned that they are not scary words.  CP is not a disease, it is a condition.  It is actually more of a description, if anything.  There are hundreds of thousands of people walking around with this condition, though many of them go unnoticed because their symptoms are so slight.  Basically, “cerebral” means brain and “palsy” means muscle problem.  So you might have CP if your brain is not making your muscles work quite right.  Many times CP is a diagnosis of exclusion - if they can’t figure out any other reason for the muscle problem, they call it CP.  That is definitely what has happened in Madison’s case.

There is absolutely no cure for Cerebral Palsy.  At this point in time, there is no way to go in and fix the part of the brain that is causing problems.  Sometimes they can’t even figure out what part of the brain is causing the problem (as in Maddie’s case).  But though there is no cure, there is a lot of hope for children with CP.   CP is not progressive.  That is, people with CP can never get worse.  They have what they have and that doesn’t change.  Though Madison’s muscles can never be “fixed”, they certainly can be trained.  That is why “early intervention” is key to having a functional life.  They earlier you try to teach the brain to work the muscles correctly, many people with CP can end up having a fairly “typical” life.  Also without all of this therapy, the muscles could grow and develop incorrectly, therefore causing some pretty horrible long-term problems.  A quick vocabulary lesson: “early intervention” is for children under three who have special needs, “special education” is for kids over three.  (Took me an entire year to figure that one out!)

There are many types of CP and many different degrees of it.  Madison actually has a combination of three different types, so they call it “Mixed CP”, which happens in about 10% of all CP cases.  In some cases, the entire body is affected, but in others only a few muscles are affected.   Almost all of Maddie’s body is affected, but not all of her muscles are severely affected.

How does a child get CP?  There are many different causes, but most of the time, the cause will always remain unknown.  We have no idea how this happened to our little girl. Babies who  are premature, have a traumatic birthing experience, or have to be put on a ventilator have a higher risk of having CP.  Quite often something happens in utero, and that something is usually unknown.  This is one of the hardest parts of accepting this condition.  I had a very healthy pregnancy and delivery, without any trauma, so Madison’s cause will forever be a mystery.  She does have that funky thing going on with her chromosomes and the doctors seem to think that this must somehow be related. 

How typical will Madison’s life be?  At this point we have no idea, as is the case with most youngsters with this condition.  We can just pray that all of these hours and hours of therapy are helping all of those beautiful little muscles learn to move the right way!   We have very high expectations for this little girl, and know that her amazing perseverance will help her go a very long way.

To learn even more about CP, click here: