Friday, March 08, 2013

Special Needs Spotlight: Ethan, Cade and Colby


                                                                                                                             Emily and her husband Brig

Hi guys!  I'm so excited to be doing a little different special needs spotlight today.  Instead of hearing from parents, we're going to hear about special needs from a sibling's perspective.  As a mother I'm particularly interested in knowing what it's like for a sibling.  Emily really gives some great answers and has a great perspective.  I think all of us are very grateful for those amazing siblings of our special needs kiddos.  Thanks Emily!
*****
My name is Emily and I am honored to be here on Miggy’s blog! I am married to my best friend, Brig, and we are in the midst of getting used to being parents!  Our little boy arrived on February 23, 2013 and is a blessing!!  In 1990, my oldest brother was diagnosed with Duchenne Muscular Dystrophy and in 2002, we found out my two youngest brothers were also affected by the disease.  It has been and continues to be a hard thing but we are a happy family!

*************** 

Miggy:  Emily, you are the first sibling that I'm interviewing and I'm very excited for this unique perspective.  You grew up with not only 1 brother with special needs, but 3!  Tell me, do you remember when you first realized your brothers were 'different' and had different needs than other kids?  How old were you?  Was there a specific moment of clarity or understanding? 

Emily:  My oldest brother, Ethan was diagnosed the same year I was born when he was 7 years old. By the time I could remember and was really paying attention, he was in a wheelchair so that was the norm for me. With my younger twin brothers, Cade and Colby, there was a moment of clarity. I was 10 when they were born and 2 years later is when my parents told us that they too had MD.  Immediately I knew what was in store for them and it was heartbreaking for all of us, especially Ethan.


Miggy:  What was day-to-day life like with not only 6 children, but 3 of those children having special needs? 

Emily:  Day to day life was pretty normal for me, I think. It’s the only childhood I knew. When I was younger, it was just Ethan who needed help. As the disease progresses, the muscles get weaker and weaker and more functionality is lost.  So Ethan needed help with everything from bathrooming to scratching his nose.  My siblings and I did a lot of those little tasks for him like lifting his arm to scratch an itch or propping his arms up on his box so he could eat.  We had a lot of fun together and found joy in things other families do like vacationing together and playing Nintendo.  We lived in many different countries growing up, so in that sense Ethan had a rather spectacular childhood as he had a lot more cultural experiences than most people get to.  That was a huge blessing in his life. 

Being 10 years older than Cade and Colby who are now 13, I have been out of the house as their disease has progressed for the past 4 years.  I see them very often and they require the same help that Ethan did. 




Miggy:  Tell us about your parents and how they handled the challenges and opportunity of raising your unique family. 

Emily:  My parents are saints! From them, I have learned to take challenges as opportunities instead of setbacks and act instead of becoming a victim of this horrible disease.  They have been strong for each other and for their children.

One reason I am so honored to talk about my parents is because of the struggles they’ve been through together.  I have 4 brothers, 3 of whom, as you know, have MD.  The 4th brother, Ben, was just younger than Ethan and was the only healthy brother.  He was vibrant and strong and he was taken from us on his LDS mission to Rosario, Argentina.  He died in a train accident and it was so difficult to understand why God took him away too.  My parents have shown extraordinary faith in the face of soul-breaking heartache and have come through it.  Faith in God has been the key to recovery for all of us and our faith is stronger today than it ever has been. That is all thanks to the example of my incredible parents.


Miggy:  I think that all of us parents of children with special needs worry about the siblings--our 'typical' children.  Are they getting enough attention?  Do they feel as special?  Are they going to resent being dragged to endless therapy/doctor/specialist appointments?  Do they have too much responsibility?  From your perspective, what can we as parents do to help our other children thrive in this special needs journey?

Emily:  I think the most important thing parents can do is have individual, specific time that is set apart for each child.  I loved being together with the entire family and always felt loved and cared for but the most special times were the dates with my mom or dad.  They made sure to take time out for each of us and make us feel important and unique.  Also, just showing unconditional love to your child with special needs helps other children know that you love them unconditionally too.  There needs to be an atmosphere of love and peace in the home.


Miggy:  Of course us special needs parents also know how wonderful and special this journey is.  As a sibling what were/are some of the benefits and blessings of growing up with siblings who had special needs?

Emily:  Oh, the blessings are innumerable. You are so right- it is a wonderful and special journey. I feel so blessed to have these experiences in my life because they have given me perspective.  I can empathize with so many people.  I feel comfortable around people with special needs (I have found that feeling comfortable around these special people is not as common as I thought).  I am so grateful for this because people with special needs have brought so much light into my life.  My faith in God is stronger, my empathy is deeper, my heart is fuller because of my family.  The biggest blessing I think is a sense of pure appreciation for the moments we have together.  I cherish them.



Miggy:  Emily, one of your brothers died from MD in 2009 at the age of 26.  What would you like us to know about him?  

Emily:  Thank you for including this question, Miggy.  Ethan died on January 15, 2009 in his sleep.  I want people to know that he was strong til the end and died with peace in his heart.  He wasn’t always at peace.  He went through stages of anger towards God and everyone around him, frustration at his lack of ability to do the things he wanted, sadness because his brothers would share his fate.  But he endured.  What an incredible example to me!  He kept his sense of humor and his innate kindness. 

In the last 10 years of his life, his needs were demanding on everyone in the house, especially my parents.  I wish I had been more patient and kind to him when he needed me.  Sometimes I would get frustrated from all the times he needed help and that is my biggest regret.  Be kind, be patient, be charitable.

  
Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh even when times are tough.  Do you remember any funny conversations/moments from your childhood due to your special needs situations?  

Emily:  Oh yes!  So many funny moments!  The one that stands out is that in the cemetary where Ethan and Ben are buried, there are plots for my dad, mom, Cade, and Colby that are just grass right now. We joke that we are going to all lay down in our respective grave plots and take a picture!  Black humor is definitely a big part of the conversations in our house :)


Miggy:  Emily, is there one lesson or nugget of truth that you'd like to tell us about your wonderful family--either your parents, your siblings (including your other 'typical' siblings) or any other aspect of your family that we might benefit from?

Emily:  I’ve learned that it is possible to come out of trials stronger than before and that’s possible if you turn toward each other and toward God.  Let yourself feel and emote and share that with your family. Allow them to help you.  I’ve also learned that prayer is the greatest source of strength in my times of hurting.  Lastly, (I know... that’s 3 things) I’ve learned that happiness can be the fundamental tone of existence even in the midst of family members with special needs.

***************

Oh Emily, that was wonderful!  First, your parents truly do sound like Saints.  I didn't know your other brother had passed away as well.  I'm glad you all have been able to find peace, joy and humor in the midst of such difficulties.  Thanks for letting us know that one-on-one time meant so much, and also that one of the great benefits of having siblings with special needs is your comfort level around others with special needs is so high.  I love your parting line that "happiness can be the fundamental tone of existence even in the midst of family members with special needs." I think that could apply to almost any trial or difficulty.  Thanks again Emily!

If you or someone you know would like to be a part of the special needs spotlight please email me at thislittlemiggy at gmail dot com.  If you've emailed and haven't heard back please be patient!  I'm always behind on emails.

Have a great weekend!  

5 comments:

  1. Probably one of my favorite spotlights yet. My daughter was spotlighted in 2011 and since then we have added another daughter to our family. It is so wonderful to hear such a positive yet real perspective from a normally developing sibling who deals or dealt with special needs on a day to day basis. Thank you, Emily!!

    ReplyDelete
  2. I have LOVED the last two spotlights! Thank You for providing different perspectives :) HUGS, Alaina

    ReplyDelete
  3. Anonymous7:27 PM

    Thank you for this spotlight Emily and Miggy: it is really interesting.

    ReplyDelete
  4. Go Emily! and go Cade and Colby!!! Keep it up. You have our love and prayers.
    -Your cousin Taylor, wife and baby boy. =D

    ReplyDelete
  5. Anonymous7:03 PM

    Thank you for sharing your family's story from the sibling's perspective. I like how positive and strong you are. I agree with your idea of each son or daughter having individual time with the parents.

    ReplyDelete