Today marks a year since Mackenzie was diagnosed with Joubert Syndrome. You can read our journey from a year ago: Joubert Syndrome.
I wrote the following today on my personal FaceBook page:
"...this is a great time to say thanks to all of our family and friends who support and cheer Mackenzie on through her many accomplishments. And I'm especially thankful that a year ago we immediately became part of the JS family. I love being connected with and receiving great support from so many people around the world who are going through the same journey we are and being able to cheer on other individuals with Joubert Syndrome with their many accomplishments!"
I talked with a good friend on the phone last night. A friend who lives in Canada. I have never met Jen in person however I have had several phone conversations with her and endless FaceBook messages. Her son is a little younger than Mackenzie. He and Mack are very similar (from the stories we exchange with one another) so it is very helpful to talk with someone who is parenting a child so much like my own.
I have another friend who lives in Spain. Again, never met her. Her son is 7. We exchange messages often. She has a blog (http://diaridunaapraxia.blogspot.com/). You'll have to find the 'google translate' on the side of the blog since it isn't in English.:) She did a video specifically for Mackenzie. I know that Arnau and Mackenzie will be friends in the future due to their shared love for cars and Thomas the Train!
The 2 paragraphs above show the connection and friendships I've made with people I may never meet in person (although I'm REALLY hoping to meet both of these families in the future!). Both of these women have been extremely helpful and encouraging to me. We relate to one another in so many ways. And these are just 2 examples of friendships I've made- I could list several more. My hope is that as Mackenzie gets older, she will have the similar connections but with people who have JS who share her accomplishments, struggles, etc.
On top of the connections our family has made with individuals going through similar journeys that we are, we have also received so much support from family and friends. I know that Mackenzie will grow up feeling very blessed for all of those who cheer her on and support her with whatever she does in her life.
The diagnosis Mackenzie received a year ago came as a surprise (we went a year being told that Mackenzie's brain MRI was 'normal' so when we were told it was misread we weren't sure what to think). But I definitely wouldn't change how things have happened. Joubert Syndrome doesn't define Mackenzie. But it does help us understand her better. And it has definitely brought us the support we need.
Like I've stated numerous times, we are very proud of Mackenzie and her endless determination. This video was taken a week ago. Mackenzie has come a long way in the past year and I know she will continue growing in so many ways. I love watching her run outside!
I want to end by posting the lyrics to a song. I posted these lyrics on FaceBook a year ago after we heard that Mackenzie had Joubert Syndrome. No matter what life throws at us, I do believe that there are always blessings to be found. Often times it's very hard to find those blessings, but they are there.
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I wrote the following today on my personal FaceBook page:
"...this is a great time to say thanks to all of our family and friends who support and cheer Mackenzie on through her many accomplishments. And I'm especially thankful that a year ago we immediately became part of the JS family. I love being connected with and receiving great support from so many people around the world who are going through the same journey we are and being able to cheer on other individuals with Joubert Syndrome with their many accomplishments!"
I talked with a good friend on the phone last night. A friend who lives in Canada. I have never met Jen in person however I have had several phone conversations with her and endless FaceBook messages. Her son is a little younger than Mackenzie. He and Mack are very similar (from the stories we exchange with one another) so it is very helpful to talk with someone who is parenting a child so much like my own.
I have another friend who lives in Spain. Again, never met her. Her son is 7. We exchange messages often. She has a blog (http://diaridunaapraxia.blogspot.com/). You'll have to find the 'google translate' on the side of the blog since it isn't in English.:) She did a video specifically for Mackenzie. I know that Arnau and Mackenzie will be friends in the future due to their shared love for cars and Thomas the Train!
The 2 paragraphs above show the connection and friendships I've made with people I may never meet in person (although I'm REALLY hoping to meet both of these families in the future!). Both of these women have been extremely helpful and encouraging to me. We relate to one another in so many ways. And these are just 2 examples of friendships I've made- I could list several more. My hope is that as Mackenzie gets older, she will have the similar connections but with people who have JS who share her accomplishments, struggles, etc.
On top of the connections our family has made with individuals going through similar journeys that we are, we have also received so much support from family and friends. I know that Mackenzie will grow up feeling very blessed for all of those who cheer her on and support her with whatever she does in her life.
The diagnosis Mackenzie received a year ago came as a surprise (we went a year being told that Mackenzie's brain MRI was 'normal' so when we were told it was misread we weren't sure what to think). But I definitely wouldn't change how things have happened. Joubert Syndrome doesn't define Mackenzie. But it does help us understand her better. And it has definitely brought us the support we need.
Like I've stated numerous times, we are very proud of Mackenzie and her endless determination. This video was taken a week ago. Mackenzie has come a long way in the past year and I know she will continue growing in so many ways. I love watching her run outside!
I want to end by posting the lyrics to a song. I posted these lyrics on FaceBook a year ago after we heard that Mackenzie had Joubert Syndrome. No matter what life throws at us, I do believe that there are always blessings to be found. Often times it's very hard to find those blessings, but they are there.
Blessings
By Laura Story
We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
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BJ and I are blessed beyond measure to have this beautiful girl as our daughter. We are so proud of who she is!
