Hello!! My name is Anna
Dietzen and I thrilled to share our journey into the world of special needs
through our beautiful son Parker. I am the wife to Nick-a handsome, hardworking
CPA and mom to Parker (2) and Lane {6 months}. My husband and I met in college
and were married in 2007. A few years later we decided to start a family and
before we knew it we were pregnant! The pregnancy was wonderful and I loved
everything about it, even his birth was a great memory and we were so excited
to start this journey into parenthood. At his 2 month check up we were referred
to an ophthalmologist due to some abnormal eye movements. He was
diagnosed with rotary nystagmus {the involuntary rotation of the eye}. While
this was devastating for us to hear at first, this was just the beginning. At
his 6 month check up he was pretty delayed on his milestones and so we were
referred to a neurologist, who suggested we get an MRI to look for a brain
abnormality. Parker went in for an MRI in March of 2011, and was diagnosed with
Joubert Syndrome the next day. Joubert Syndrome is a rare genetic disorder that
is characterized by partial or complete absense of the cerebellum. It can cause
decreased muscle tone, difficulties with coordination, abnormal eye movements,
abnormal breathing patterns and cognitive impairment. Despite the unexpected
and initial devastating diagnosis, Parker is the greatest blessing we could
have ever received. His brings us so much joy everyday and has taught me more
about life than I could have ever imagined. If you are interested in learning
more about our Unexpected Journey you can check out our blog: http://www.nickandannadietzen.blogspot.com.
Dietzen and I thrilled to share our journey into the world of special needs
through our beautiful son Parker. I am the wife to Nick-a handsome, hardworking
CPA and mom to Parker (2) and Lane {6 months}. My husband and I met in college
and were married in 2007. A few years later we decided to start a family and
before we knew it we were pregnant! The pregnancy was wonderful and I loved
everything about it, even his birth was a great memory and we were so excited
to start this journey into parenthood. At his 2 month check up we were referred
to an ophthalmologist due to some abnormal eye movements. He was
diagnosed with rotary nystagmus {the involuntary rotation of the eye}. While
this was devastating for us to hear at first, this was just the beginning. At
his 6 month check up he was pretty delayed on his milestones and so we were
referred to a neurologist, who suggested we get an MRI to look for a brain
abnormality. Parker went in for an MRI in March of 2011, and was diagnosed with
Joubert Syndrome the next day. Joubert Syndrome is a rare genetic disorder that
is characterized by partial or complete absense of the cerebellum. It can cause
decreased muscle tone, difficulties with coordination, abnormal eye movements,
abnormal breathing patterns and cognitive impairment. Despite the unexpected
and initial devastating diagnosis, Parker is the greatest blessing we could
have ever received. His brings us so much joy everyday and has taught me more
about life than I could have ever imagined. If you are interested in learning
more about our Unexpected Journey you can check out our blog: http://www.nickandannadietzen.blogspot.com.
***************
Miggy: Anna, can you take me back to the day you
knew your son was diagnosed with Joubert Syndrome? Do you remember
how you felt? Can you compare those first thoughts and feelings with how
you feel now?
knew your son was diagnosed with Joubert Syndrome? Do you remember
how you felt? Can you compare those first thoughts and feelings with how
you feel now?
Anna: When our pediatrician referred us to the
neurologist, I honestly expected it to be a quick appointment where he would
tell us everything was fine and we would be done. When the neurologist checked
out Parker and told us he was pretty confident that Parker had a brain
malformation, my entire world crashed. I couldn’t believe what I was hearing. I
knew that Parker was behind on his milestones, and something seemed a bit
“off” with him, but never in a million years did I think there
was something wrong with his brain. My husband and I left that appointment in
absolute disbelief, we embraced each other and just sobbed until we had no
tears left. This perfect little baby of ours had something wrong with him and
there was nothing we could do about it. It was such a helpless feeling.
neurologist, I honestly expected it to be a quick appointment where he would
tell us everything was fine and we would be done. When the neurologist checked
out Parker and told us he was pretty confident that Parker had a brain
malformation, my entire world crashed. I couldn’t believe what I was hearing. I
knew that Parker was behind on his milestones, and something seemed a bit
“off” with him, but never in a million years did I think there
was something wrong with his brain. My husband and I left that appointment in
absolute disbelief, we embraced each other and just sobbed until we had no
tears left. This perfect little baby of ours had something wrong with him and
there was nothing we could do about it. It was such a helpless feeling.
About
a week after our initial meeting with the neurologist, we had the actual MRI
that diagnosed him. Having the actual diagnosis and knowing how to move forward
was actually quite a relief. Once we were able to process through the initial
shock of what it could be, we were relieved to learn what the actual diagnosis
was and what we could do to help him. Although there is no “cure” or
anything to take away the obstacles, we were excited to get him started
in physical, occupational, and speech therapies. Looking
back it’s amazing to see how much I have grown as a person. This whole
unexpected journey has taught me so much about myself, about my faith, my
relationships, about love in general. I never could have fathomed that in
Parker’s short time he would change our world in the best way possible. Our
life would not be as full, our marriage wouldn’t be as strong, our family
wouldn’t be as close, and I wouldn’t be the mom I am without Parker teaching me
something new everyday. It sure has it’s challenges, but it is so much sweeter
on the other side.
a week after our initial meeting with the neurologist, we had the actual MRI
that diagnosed him. Having the actual diagnosis and knowing how to move forward
was actually quite a relief. Once we were able to process through the initial
shock of what it could be, we were relieved to learn what the actual diagnosis
was and what we could do to help him. Although there is no “cure” or
anything to take away the obstacles, we were excited to get him started
in physical, occupational, and speech therapies. Looking
back it’s amazing to see how much I have grown as a person. This whole
unexpected journey has taught me so much about myself, about my faith, my
relationships, about love in general. I never could have fathomed that in
Parker’s short time he would change our world in the best way possible. Our
life would not be as full, our marriage wouldn’t be as strong, our family
wouldn’t be as close, and I wouldn’t be the mom I am without Parker teaching me
something new everyday. It sure has it’s challenges, but it is so much sweeter
on the other side.
Miggy: Explain how your child’s specific special
need affects your day-to-day life?
need affects your day-to-day life?
Anna: Since Joubert Syndrome affects the
cerebellum, which houses almost everything in your brain, Parker is globally
affected. He has low muscle tone, abnormal eye movements, slight speech delays,
and some sensory issues. The biggest way that this affects Parker daily is the
physical aspect. At almost 3 years old, Parker still is not able to walk
independently. He sat independently at 18 months, crawled at 2 1/2 and is just started
to stand and walk with assistance. This affects his ability to play with other
kids his age and do activities that most kids are able to do. He is a
determined little guy though and will find a way to get to and do what he
wants!! He is very motivated by seeing the other kids moving and wants to join
along with them so bad. With his amazing progress and determination, we expect
him to walk within the next year. It
is actually probably more difficult on me than him, as he is a pretty happy and
content little guy most of the time. It’s more of a physical demand on me
having to carry him everywhere {while also carrying our 6 month old}, or deal
with the occasional outburst or fit of frustration. But since this is all we
have ever known, it is kind of “normal” to us and we just make due!
cerebellum, which houses almost everything in your brain, Parker is globally
affected. He has low muscle tone, abnormal eye movements, slight speech delays,
and some sensory issues. The biggest way that this affects Parker daily is the
physical aspect. At almost 3 years old, Parker still is not able to walk
independently. He sat independently at 18 months, crawled at 2 1/2 and is just started
to stand and walk with assistance. This affects his ability to play with other
kids his age and do activities that most kids are able to do. He is a
determined little guy though and will find a way to get to and do what he
wants!! He is very motivated by seeing the other kids moving and wants to join
along with them so bad. With his amazing progress and determination, we expect
him to walk within the next year. It
is actually probably more difficult on me than him, as he is a pretty happy and
content little guy most of the time. It’s more of a physical demand on me
having to carry him everywhere {while also carrying our 6 month old}, or deal
with the occasional outburst or fit of frustration. But since this is all we
have ever known, it is kind of “normal” to us and we just make due!
Miggy: What are the biggest worries you face for
Parker?
Parker?
Anna: My biggest worries for Parker are just the
future in general. The spectrum of Joubert Syndrome is so broad that it is
truly a case by case basis. There really is no baseline for what you can expect
from each child, so it’s just a day by day situation. It’s hard to know what
the future will hold for us…what his struggles will be, whether he will live
independently or not, if school will be challenging for him or not, and things
I may not even know about that could become an issue. I try not to think too
much about these things because they can become overwhelming. Instead I like to
focus on the amazing progress he has made and allow him to be like any other 2
year old would be.
future in general. The spectrum of Joubert Syndrome is so broad that it is
truly a case by case basis. There really is no baseline for what you can expect
from each child, so it’s just a day by day situation. It’s hard to know what
the future will hold for us…what his struggles will be, whether he will live
independently or not, if school will be challenging for him or not, and things
I may not even know about that could become an issue. I try not to think too
much about these things because they can become overwhelming. Instead I like to
focus on the amazing progress he has made and allow him to be like any other 2
year old would be.
Miggy: Now for a lighter question, I’m a big
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?
Anna: The beautiful part of having a child with
huge obstacles to overcome, is that when they DO overcome those obstacles or
meet those milestones, it is an AMAZING moment!! Just the other day Parker came
in from playing outside and had huge rugburns and skinned up his knees, and
although I was concerned about his knee bleeding, I was also laughing and
celebrating because he was outside enjoying playing with other kids and doing
his best to keep up. He wasn’t going to let the fact that he couldn’t walk keep
him from having a good time. It’s the little things that parents of typically
developing children get frustrated with, that we laugh and celebrate!! Everything is a milestone for us and I LOVE IT!
huge obstacles to overcome, is that when they DO overcome those obstacles or
meet those milestones, it is an AMAZING moment!! Just the other day Parker came
in from playing outside and had huge rugburns and skinned up his knees, and
although I was concerned about his knee bleeding, I was also laughing and
celebrating because he was outside enjoying playing with other kids and doing
his best to keep up. He wasn’t going to let the fact that he couldn’t walk keep
him from having a good time. It’s the little things that parents of typically
developing children get frustrated with, that we laugh and celebrate!! Everything is a milestone for us and I LOVE IT!
Miggy: How can people best approach or respond to
Parker? Is there something you wish other people knew so as to avoid awkward or
hurtful situations?
Parker? Is there something you wish other people knew so as to avoid awkward or
hurtful situations?
Anna: Because most people don’t initially recognize
that Parker has special needs, I sometimes feel like I need to say a disclaimer
to people who don’t know. Like, “Hi my name is Anna, and my son has
special needs.” This way it’s just out there and people don’t have to
wonder or avoid the topic. I think the best way people can respond to Parker is
to just treat him like you would any other normal kid and try and include him
in as much as possible. Sometimes I think people are afraid to ask or worry
that I will be sensitive to the topic, but I would rather someone ask me about
Parker, than avoid it or treat him differently.
that Parker has special needs, I sometimes feel like I need to say a disclaimer
to people who don’t know. Like, “Hi my name is Anna, and my son has
special needs.” This way it’s just out there and people don’t have to
wonder or avoid the topic. I think the best way people can respond to Parker is
to just treat him like you would any other normal kid and try and include him
in as much as possible. Sometimes I think people are afraid to ask or worry
that I will be sensitive to the topic, but I would rather someone ask me about
Parker, than avoid it or treat him differently.
Miggy: If you could say something to the mom who
just starting on this journey of special needs, what would you
say? What would you say to yourself if you could go back in
time?
just starting on this journey of special needs, what would you
say? What would you say to yourself if you could go back in
time?
Anna: I would first off give her a HUGE hug and
tell her I understand. That I’ve been there and I know it hurts…..but that it
DOES get better. That she will experience life in a whole new way and she will
live a richer, fuller, and sweeter life than she could have ever imagined. That
there will be dark days, but the good days will be that much better. That she
will learn to love in a way that she never would have thought possible and her
child will touch lives that she could have never dreamed.
tell her I understand. That I’ve been there and I know it hurts…..but that it
DOES get better. That she will experience life in a whole new way and she will
live a richer, fuller, and sweeter life than she could have ever imagined. That
there will be dark days, but the good days will be that much better. That she
will learn to love in a way that she never would have thought possible and her
child will touch lives that she could have never dreamed.
Miggy: What is the biggest lesson you’ve learned
since becoming a special needs mom?
since becoming a special needs mom?
Anna: This is a tough question to answer! What
haven’t I learned since becoming a special needs mom?! 🙂 I think one of the
biggest things I have learned is confidence. Confident in who I am and who I
was created to be. I never knew what I was capable of. I had no idea that I
could be this strong and that I would become a “warrior mom.” That I
could endure so much and advocate so strongly and be confident in the fact that
I am the best mom I can be for him and that God created me specifically to be
Parker’s mom. And despite his special needs, be confident in the fact that
Parker was created PERFECT and is my inspiration every single day!!!
haven’t I learned since becoming a special needs mom?! 🙂 I think one of the
biggest things I have learned is confidence. Confident in who I am and who I
was created to be. I never knew what I was capable of. I had no idea that I
could be this strong and that I would become a “warrior mom.” That I
could endure so much and advocate so strongly and be confident in the fact that
I am the best mom I can be for him and that God created me specifically to be
Parker’s mom. And despite his special needs, be confident in the fact that
Parker was created PERFECT and is my inspiration every single day!!!
***************
I want to thank Anna for sharing her sweet Parker with us. Anna, I really feel like I could feel your joy and love for Parker leaping off the page. It is infectious. I loved so much of what you had to say. Like you, I do not dwell too much on what our daughters future looks like, but I enjoy her now, and yes! everything she accomplishes is a huge milestone for us and that’s so exciting. But I loved what you said at the end about becoming a more confident person and mom, an advocate and that you know you’re the best mom for your son. So beautiful. Thanks again Anna.
As always if you or someone you know would like to be part of the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com. Please keep them coming! And if I haven’t emailed you back yet, please be patient with me!
Have a great weekend!
what a gorgeous little boy, and what an attractive family!
I love these special needs spot lights- the love and commitment these families show is so inspiring.
Thank you for sharing your story x
What a sweet boy! And aren't the lessons we learn on the journey amazing? I never would have picked out my son's challenges, but now, I wouldn't give it up for the world. These little ones really do teach our souls.
I love your spotlights, and its so wonderful to read about "warrior Moms" such as Anna. I followed the link to her blog and watching little Parker talk about Thomas the train just melted my heart. He is absolutely adorable.
I've been reading your special needs spotlights for a long time, but I was still very surprised to see this one on Parker and his Joubert Syndrome. My 19 year old niece has Joubert Syndrome and it is such a rare condition that it is rarely heard of and I haven't seen it in many other children. Anna and Parker and family have my best wishes!!
Great story and I can truly relate. My son is 27 and has Joubert. He was "officially" diagnosed with it 2 years ago after being mis-diganosed with several other syndromes such as Duane's, Smith-Lemley-Opitz, Ataxix CP, etc. We are in Ottawa, Canada and have one of the worlds leading genetisicts who specializes in JS working here so we have been pretty lucky teaming up with her and a whole new team of doctors. My son will be speaking at the JS Fouundation Conference in Minneapolis in July about his journey through life with Joubert.
He's got 2 college certificates (Script Writing & General Arts & Sciences/Media Relations and functions at a fairly high level.
Cheers, Terry MacLellan