What is Joubert Syndrome?

.hope.

I often find myself in awe of the progress that Parker has made. I look at him sitting independently, feeding himself, constantly jabbering and I am so proud of all the hard work he has done to get to where he is now.

But I also have times of panic
When I think about sending him to school or when signups for sports teams come around. What will that be like for us? Where will Parker be at in his progress and what will he be able to or not be able to participate in.

And then there are times that I think about the far off future.
When someone jokes about when our kids go to college or get married.
At times like that I feel like I have been punched in the stomach.

I put on a smile and laugh along with the joke,
but inside I am thinking..
Parker may never get to go to college, and he may never get married.

And it hurts to think that the things that I enjoy so much, may not be reality for my son.

But thinking so far down the road is too overwhelming for me so I just have to take things day by day in order to function. We celebrate the little things.

When Parker reaches his hands to the sky when we say "SO BIG"
Or when he figures out how to drink out of a straw.
We celebrate big when he starts sitting independently.
And when he picks up a toy phone and says "Hi" and jabbers on.

And I have hope that he will continue to develop and progress and enjoy life to its fullest.

I have been reading Kelle Hampton's blog for a while now and I love reading how she has processed dealing with her daughters down syndrome diagnosis.

That these things happen, that it may not be what we expected, but it's okay. That we refuse to let our children be defined by a "diagnosis" and refuse to accept what stigma's and limitations that society has placed on any child with "special needs".

Today she posted THIS video...

I haven't stopped crying since I watched it.

Regardless of your religious beliefs, the principle behind the event is amazing.

Some of society's most outcased people become the stars for the evening.

They SHINE.

This gives me hope. Hope for Parker and hope for our world.

THIS is what Jesus came to do and this is what I am going to do. Love those who society says are unworthy.

Because I know from personal experience that they are most worthy of being loved. That Parker is more than worthy of being loved and accepted.

It breaks my heart to think that there are so many special needs adults that are just forgotten about. Never given the change to attend a Prom, or feel special.

And I want to change that.

Not only for Parker, but for all those people out there who deserve to feel special, who deserve to feel loved. And to know that we aren't so different after all.

At the core of every person is the desire to be accepted and loved, regardless of anything.

I am excited and hopeful that there are many great things to come and I plan on taking the words of Jesus very seriously when he said:

Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’[c] 38 This is the first and greatest commandment. 39 And the second is like it: ‘Love your neighbor as yourself.
{Matthew 22:37-39}

Loving your neighbor, special needs or not.

And that my friends, is some hope!



2 comments:

the tampiens said...

I'm so glad you've found some encouragement from that blog -- it's one of my faves too! :)

Paige Taylor Evans said...

Just came to your blog from a comment you left on mine - I'm so inspired by you and your journey and I hope and pray that you continue to have such strength and encouragement!