Don't Poke the Mama Bear - My First Letter to the Editor

Last Friday we had Ellie's planning meeting with her whole team; Early Intervention, Physical Therapy, Occupational Therapy and Speech Therapy. We were discussing what will happen when Ellie turns three in January. Thinking of school, learning, bus rides, and making friends makes me sweat and want to stress eat. I went into the meeting feeling nervous and unsure, but by the end of it we had a wonderful plan in place for Ellie and I felt lighter, hopeful even. The positive feedback I received about how she's doing was so reassuring. Her team believes in her and they truly think she will to rock it when it's time to go to school! WHEW!

But this leads me to a letter to the editor that I read the week before Ellie's big meeting. My good friend and fellow Rockin' Mom Jenny shared it with me. Jenny lives in Pennsylvania and this article was published in Grants Pass, Oregon. The post was titled “Special needs kids don't need to be in classroom” and it was written by a woman named Betty. I doubt Betty expected her letter to go viral, but it did. Below you can see the newspaper clipping for yourself, please read it and let it soak in for a minute.

"Ride the small buses?" As you can imagine, I was disturbed by Betty’s letter. Actually disturbed isn’t the right word, I was just plain pissed. Just when I feel like we are getting somewhere with inclusion and acceptance, something like this has to come along and punch me in the gut. I decided to contact the editor of the Grants Pass paper with my rebuttal. My fingers were typing faster than my brain could even work and I quickly sent off an email to him. Soon after I received a reply stating that their letters have a 250 word limit, and my letter was 483 words. Oops. The editor said he would like to share my opinion but I would need to refine my letter, which I did.

I also explained to him that I thought Betty’s letter should not have been published in the first place. I think it's discriminatory. He confirmed that he agreed that it showed this woman’s ignorance but that her opinion was still just that, her opinion. I strongly believe that had Betty singled out any other race or group of people that the letter would not have been published. I checked in on the paper's Facebook page and found that the visitor posts have been blocked. There were many insightful and some angry posts from across the world, all aimed at Betty. I think it became too much for them to manage. I'm curious to see if the paper has any follow-up on this, such as an apology.

Below is my letter to Betty. I sure hope she had a chance to read it and that she reads the other letters that have come in. I also have to give a shout out to my friends Andrea and Lisa who found me a copy of the paper- this particular newspaper is only readable online if you have a subscription. So thank you my friends for getting it for me!

I realize this is just the beginning of the adventures and hurdles I'll face while raising Ellie. Seeing the responses from fellow Rockin' Moms and other parents of kids with special needs makes me realize how lucky we are. We are so blessed to have our kids in this generation, and not in the generations before it. I have a sneaking suspicion Betty grew up in a time when those who were different were either institutionalized or hidden away. I truly hope she has a change of heart. 

For this post's song, I chose an absolutely beautiful one by the band Gungor. If you have a child with special needs I urge you to listen to it. Michael and Lisa Gungor have a gorgeous little girl with DS named Lucette, which means "light". When I first watched the video it brought tears to my eyes and a flood of memories back to the day of Ellie's birth. The emotion in Michael and Lisa's faces is so familiar to me. I can see the fierce protective love, mixed with a fear of the unknown. After reading their blog I found out they also had a birth diagnosis. Their birth story is worth the read, and it'll surely make you cry. Ahh, it's just amazing.

And Betty, I doubt you will ever read this but I think you should listen to this song too. All children are amazing gifts who deserve only the best in life. 


And the blind gained sight
As we met our light
Oh the joy and fight
The gift of life

Your hands, the creases
Your feet, your breathing
You're mine, you're perfect light

Light - Gungor

I'm a Third Generation Special Needs Mom

I've been thinking a lot about this whole "special needs parenting" business lately. I've had friends say to Jesse and I that they don't think they could do what we do. I catch the tilted head smiles of mom's at the grocery store, behind those compassionate eyes I can feel them saying "I'm so glad it's you and not me." But you know what? We love our kids unconditionally just like every other parent out there. We aren't doing anything extraordinary. 

I'll never forget the day it happened. A friend had sent me a Huffington Post article called 7 Things You Don't Know About a Special Needs Parent. It talks about how we feel tired, alone, scared, and a number of other things. As I clicked on the link and started to read I related to some but not all of the points. Then I thought, "wait a second... I'm a special needs parent!?" Ellie was already a couple months old and I never made the connection. But then I realized something pretty amazing. I had just joined the ranks of two other pioneer women in my family. My mom and my Grandma Hattie were also special needs mamas. And they were damn good at it.

I would like to tell you a little bit about my awesome Uncle David. He was born in 1947 and was the baby of his family, with two big sisters and 3 big brothers. He was an absolutely gorgeous boy. Our Luke inherited his beautiful brown eyes.

Uncle David

Without going into too much detail I would like to share the story of what happened to my uncle. It was Christmas in 1953, David was 6 years old. He asked his parents for a new bike for Christmas. They lived in the hills of Oakland, and didn't feel comfortable buying him a bike just yet, "maybe when you are a little older" they told him.

My Grandparents

My mom said that every birthday she and her siblings would receive $5 as their gift. David's 7th birthday came along in April and he was determined to have that bike. He went over to the neighbor boy's house and bought his bike for $5. What David didn't know was that the bike had no chain. As he coasted down the hill, his attempt to stop the bike was unsuccessful. He was hit by a car, and his head was ran over. David's life, my mom's life, my aunt and uncle's lives, and my Grandma and Grandpa's life was forever changed in that instant.

My son Will is 7. I can't help but think of my Grandma and Grandpa and envision the gut wrenching pain of almost losing your child, then to have to come to terms with the fact that your child will never be the same. It's something no parent should ever have to face. My Grandpa passed away from cancer when David was 12, so my Grandma raised him alone from then on. I never sensed an ounce of bitterness or anger from my Grandma. She was an amazing and strong woman in my eyes.

Me and my Grandma Hattie, I was probably Ellie's age here.

David and his dad.

David grew to be a gentle and loving man. He had a huge heart and loved animals, movies, and his great nephews Will and Luke. He had a laugh that was booming and it always put a smile on your face. He was tall, at 6'6" with a signature walk. He was known around his town of Yamhill. At first people would shy away from David, with his loud voice and awkward gait. But after living in Yamhill for a couple of years the people in town grew to know and love him. He lived with my Grandma until her death in 1996, and stayed in that same house until his death in 2010. We loved our Uncle David, and I miss him so much.

Mom and her little brother

David and his Great Nephew Will

My brother Danny was born in 1965. When he was 6 weeks old he had surgery on a hernia that was coming out of his belly button. My mom thinks that he was under the anesthesia too long, because when he returned home he was a different baby. He was slower, lethargic, he had changed. 

At age four he had a horrible bout of chickenpox. The spots were all over his body, inside his mouth and appeared to go down his throat. At one point he stopped breathing and turned blue. My dad had to perform CPR and was able to bring him back to life. It's unknown if the anesthesia caused my brother's delays, or if it was the lack of oxygen to his brain when he was four. My parents were never able to get a solid reason from the doctors.

Mom and Danny

It is so interesting talking to my mom about my brother, or her brother David. My mom dealt with the school systems, fought for Danny's education, promoted love and inclusion and acceptance. I never really paid attention to it though, it was just threaded into my existence. I have never felt burdened by him, ever. My brother is my brother. He is awesome, funny, lovable, and an awesome uncle to our kids. Now at age 49 he is crazy busy with church, President of a non-profit group for people with intellectual disabilities, volunteers, has tons of friends, and is an all around busy dude. He also lives on his own and is doing great, he's a role model for his niece Ellie that's for sure. His 50th birthday is coming up in April next year and you better believe it's going to be one epic party! 

I was born into this family, with my Uncle David (who we called "UD") and brother Danny as an integral part of who our family was. So I think when Ellie was born I had the moments of panic and fear of the unknown, but the fear was dulled. I knew we would be OK. I love my daughter with my whole heart and I am going to fight for her, and my boys. Just as my mom and Grandma fought for their kids, all of them. 

Danny and Uncle Dave

I guess the point I'm trying to make is that there are no guarantees in life. We don't know what the future holds for our children. We love them, guide them and help them spread their wings. I'm so grateful to follow in the footsteps of these two women who have helped to shape who I am as a mother. I can only hope to do as good of a job as they did. Special needs or not, I think every mother does their absolute best for their children. There's nothing special about it, it's just what we do.

This week's song came to me today as I was cleaning up the house and trying to decide if I wanted to post this or not. I have a lot of blog posts just sitting in there in "draft" form, because I don't have enough courage to post them. These lyrics spoke to me:

My beloved one

My beloved one

My beloved one

You were meant for me
I believe you were sent to me

From a dream straight into my arms

Ben Harper - Beloved One (Acoustic)

I Have One Too

"Aren't you a pretty girl? You are just so sweet! You are a precious "special" girl, aren't you?" I started to feel my cheeks turn pink. I was nervous and even a little annoyed, thinking to myself "oh please don't tell me how happy they all are, and how they all love to dance." Ugh.

I was at Target with Ellie doing some shopping and was in line checking out. I could tell this woman, who was most likely in her 70's had noticed that Ellie has Down syndrome. I feel bad now that I assumed that she was going that route- the generalized "they are all happy" route, but I hear it practically every time I take my girl out in public. I smiled at the woman and started heading out the door and she quickly yells... "I have one too, my daughter!" I turned around and said "oh that's awesome!" and walked to my car, but I wanted to run back and ask her all about her daughter. Unfortunately my nerves got the best of me. But then at my next stop that day, I got that chance.

 
Ellie and I were strolling along the granola bar section at Costco and I was stopped by a couple who were probably in their late 60's. They couldn't keep their eyes off Ellie and were asking me all about her. She was doing her usual double-handed giant wave and "smizing" (smiling with her eyes) and they were loving it. Finally the woman says "we also have a special angel" to which I asked "oh, how old is she?" They went on to explain that her name was Andrea, and she had passed away when she was 9 years old. She had multiple health issues in her short life. My heart sank. The man grabbed his wallet, and pulled out a torn and faded school picture. She was beautiful with her brown hair falling down around her pretty slanted eyes. He handed me the picture and I showed Ellie, she immediately gave the photo a kiss. I had tears in my eyes as they proudly talked about their daughter. She would be 35 if she were still here, the same age as me. I was so grateful for that couple who shared their gorgeous Andrea with me that day. 

As I was checking out I couldn't stop thinking about that couple and their girl. I was turning to leave and my new friend came up behind me "can we exchange numbers?" she asked. I was so excited. "Yes!" I gave her my info and she gave me hers. She has a friend who has a daughter in her 20's with Down syndrome who lives downtown Portland, takes the Max to work and is in Zumba class. She is independent and doing awesome. She wants to introduce me to this gal's mother, who she said was such an advocate for her daughter who is doing so well. I hope I see this woman again someday. She really made my day and I honestly think I was meant to meet her.

I can't quite put my finger on what the "thing" is that happens when I meet other families who have been touched by Down syndrome, but it's amazing to me. It's like a secret club, a connection, a feeling of knowing, and it's beyond just having something in common. My family feels it, and even my friends too. Even the connection I have with the moms I've met online is hard to put into words. They are from all walks of life, and across the globe. We have spent countless hours sharing advice, worries, and triumphs. I haven't met them in person yet I feel a bond to these ladies. I have met families in real life and can't help but feel like there is something more. When Ellie was around 6 months old, I read a very interesting book and this paragraph gave me goose bumps:

"When I spoke with parents of handicapped children, all commented on the extraordinary people they met as a result of their children's handicaps - people they felt they already knew. In all likelihood, they did. There is often a special bond that goes well beyond the commonality of having handicapped children."

I don't know if I'll ever unlock the mystery to this connection I feel to these families, so I'm just going to go with it. I'm going to count my blessings and just be grateful every single day. I know that I will continue to meet new people who are on the same journey as me. They will be just beginning, or will be more seasoned pros offering invaluable advice. I look forward to talking to new moms and to be able tell them "it will be OK, I promise", just like others told me.

This week's song is one that I used to love when Jesse and I started dating over 10 years ago. It's funny how the lyrics to a song can evolve as your life changes, this one has taken on a new meaning for me. xoxo

Wave on Wave - Pat Green

15 Years Already? A Shout Out to my Pops

With my dad in 1978

I can't believe it's been 15 years since you passed away, dad. 15! I was 19 years old, it was April 16th, 1998.  You always said 16 was a lucky number because 1 + 6 equals 7... I remember because your first grandson Josh was born on the 16th a few years earlier and you had mentioned that. You know, Jess and I ended up getting married on the 16th for the same reason. :-)  (By the way I have a weird OCD number obsession thanks to you!)

I'll never forget that night. I was on my way home from the beach and wasn't in the mood to go to your house.  I hated seeing you sick.  My boyfriend at the time encouraged me to visit you and mom even though I didn't want to. I'm so glad he talked me into going.  I'm so grateful I was there when you passed, along with mom and Kevin.  Seeing you take your last breath and the look of peace on your face proved to me that you were going somewhere special. Mom told you to go to Grandma Hattie. I know that is who greeted you at the pearly gates!

Since that day you have given me many signs that you are OK.  Even kicking me in the butt while visiting your grave... it was a real kick, on my butt, and knew it was one of my brothers. When I turned around.. no one was behind me.  Or the eagle that always flies over when I think or talk about you. I can't even count how many times it's happened. We were on our boat last summer and "Knocking on Heavens Door" came on the radio. I mentioned to everyone that it was the song that we all cried to after you died.  As we were zooming along the river an eagle flew overhead as the song was almost over. And who can forget the eagle soaring over us the day I married Jesse.  Our family knew it was you. And the time I was telling Candice about the eagle while we were visiting your grave and wouldn't you know it, one flew over and made us squeal and get goosebumps. 

Knockin' on Heaven's Door - Bob Dylan

I can feel you around me all the time. I also know that my kids know you.  I think they were with you before they came to this earth to be with me.  The way they know you and understand you still stumps me to this day.  How did Will know that you used to imitate the cowardly lion?  He told me about you singing "if I were king of the forest" when he was 3 as we were watching the Wizard of Oz.  I had not told him about how you used to sing that song! And sometimes his mannerisms and the twinkle he gets in his eye remind all of us of you.  He wants to be a cop someday too, but I'm sure you already know that. When I told Will about Ellie's Down syndrome, he was fine with it but I could feel his worry. The next thing he said was "I wish Popeye was here".. I think he felt you around him, helping him to know that it's going to be OK.  

My parents. I love this pic!

At Lancaster Mall in Salem OR, 1982 maybe?

Senior prom, 1996

There's something cool about old grainy pictures from the 80's :-)

Who I am - 3/21 World Down Syndrome Day

Today is 3/21, World Down Syndrome Day. In honor of this special day I wanted to share an amazing video by the IDSC (International Down Syndrome Coalition) called "Who I am" and I would also love to share with the world who our Ellie is!

International Down Syndrome Coalition - World Down Syndrome Day 2013

Ellie Lehne...

I am snuggly, I am sweet, I am cute, I am petite!

I am the apple of my daddy's eye-

I am an adored niece (with 7 uncles and 4 aunts!)

I am the most favorite baby cousin ever-

I am a pretty princess-

I am a very loved baby sister to two awesome big brothers-

I'm a movie star! Yeah that's right!

I'm an excellent sleeper!

I am my mama's world-

I am a blessing to my family-

I am a lucky granddaughter and great granddaughter-

I am who I am, I am Ellie!

Hall of Fame - The Script ft. will.i.am

My 2 Month Old Secret

I feel really guilty and feel like I need to write about when I told my brother Danny about Ellie's Down syndrome. She was 2 months old when I finally told him (as I hang my head in shame.) 

I have 6 brothers, 5 real and one adopted. My big bro Danny (the second oldest boy) is special (there's no better way to put it!)  When he was born my mom said he was like any other baby and was a happy boy.  He also had a patent vitelline duct, which means his little belly button was herniated. This was in the mid 1960's and his doc told my mom it was no big deal when she voiced her concerns over the phone.  When Danny's pediatrician finally saw him he was shocked over the size of the hernia and they scheduled surgery immediately.  He was 6 weeks old.  When my mom and dad brought Danny home they said he was a different baby. According to my mom, he was lethargic and would just lay there.. if she would lay him on his tummy he would lay face down and not move. Heart breaking. Her gut instinct told her it was from too much anesthesia. 

Could they be any cuter? My 5 brothers, Danny is in the upper right.

My brother Danny and I, 1978

Danny and I in 1995

As Danny grew up he was delayed, but the docs never really knew the reason behind his delays. They just told my parents he was slow.  He is now a 47 year old stud, who has lived in the same apartment for 25 years. I told him he's the best tenant that has ever lived! He's also a devout catholic and in the Knights of Columbus. He loves to say he "has to pray hard to get this family to heaven".  He's awesome and he's our angel. He also proudly tells everyone that he is "Rainman" because he literally can tell you any sort of sports history you ask him about... who won the Superbowl in 1977?  He would tell you not only who played, who won, but also the scores. Oh and yes I chose 1977 because that is one of the years the Raiders won. If you ever meet Danny ask him about the Raiders. He is the most loyal fan I've ever known! Just don't ever say "Raiders suck", as my brothers can tell you, Danny has a punch called the "hollow back" and it can knock your butt down in 2.2 seconds. 

My brother's fake band pic... love this one.

Where am I going with all of this? Well when Ellie was born we relied on my brother Matt, my mom and in-laws and text messages to get the news out to our friends and family.  The task of telling Danny about Ellie weighed heavy on my heart. Danny is a worrier, big time.  I had heard him talk about people with Down syndrome, one of his friends has a daughter with DS who is now 9. She battled leukemia.  Every time he mentioned her he says she's the "girl with Down Syndrome and leukemia". I just knew he was going to worry about Ellie.  I worried about him only thinking of her having Down syndrome and not thinking of her as his niece.  She makes him an uncle for the 7th time by the way, which is his favorite number. :)

I kept mustering up the courage to tell him and every time I would call it would be a busy signal (he's a big chatter on the phone!) So finally one day he called me while I was laying on the couch snuggling Ellie. She had just turned 2 months old. I said "hey brother I have to tell you something about Ellie that I haven't told you yet" and he said "What, T?" and I told him. He said "Awww!!" but not in a sad way. Imagine it being said with excitement.  "She does?!?" he proclaimed. I was so nervous. He then said "She's a gift from God Tiff! She's going to be awesome!" Yep and then the tears started. "Darn it Danny!" I said... "there I go crying again!"

So there you have it. Uncle Danny is fine with Ellie's diagnosis. Shame on me for worrying about it, I could have used his love and support in the beginning but I was too scared to tell him. 

First time Uncle Danny met Ellie.

Oh they will kill me for putting this picture up! 3 of the 5 were actually in the Army. 

Almost the whole crew, missing brother Joey from Texas.

Daniel My Brother - Elton John