You can't see me now, but if you could...you'd see the biggest smile and the proudest heart a mama could ever have. If you've been walking alongside us from the start of our journey with our little man, Reece, you will remember that we challenged Reece to 'Dream Big' and live without limitations. Well, hang on folks...
Some amazing moms of children with special needs have been encouraging and calling on companies to include children of ALL abilities in their advertising campaigns. I am a huge supporter of this idea of inclusion and when I see companies featuring individuals with special needs in their ads, it just makes my heart soar!
One designer, you may know of her...Tori Spelling, understands the importance of this movement and decided that her 2013 Holiday Look Book was the perfect opportunity to show the world that she is on-board with including children with special needs in her advertisements. And for that, we are forever grateful!
This is a huge win for the Down Syndrome community as well as for other special needs communities. To share with the world what we already know, that our children are capable of amazing things! Today, my heart is bursting! I am so proud of Reece and all of the other beautiful children featured in this Look Book. And to Tori Spelling...thank you for allowing our children to shine so brightly. You are wonderful and I believe you will be rewarded for your efforts!
In honor of Father's Day, I am featuring a guest post by an incredible father - my husband Jeff! Please take a moment to read his inspiring blog written from his heart:
We had a plan that was creatively called "The 5 year plan"! We wanted to enjoy time together and establish ourselves. We stuck to the plan even with the pressures from family and friends pestering us with "when are you going to have a baby?!" We finally decided that it was time! When we found out Alissa was pregnant, we just started laughing and hugged each other! Immediately she started thinking of names, I started thinking of all the practice plans I needed to make for the little league teams I was going to be coaching! Over the next nine months we did what every expecting family does, bought the crib, baby clothes, argued over hanging my vintage picture of Wrigley Field in his room - I won that battle and it looks amazing, and I experienced sympathy weight gain! It was fun! For me at least! I was going to be a dad and I was excited! (Notice the Wrigley Field picture in the top right corner)
We were going in for a routine check two weeks before his due date. It ended up not being routine as they sent us straight to the hospital and told us that today was the day! We were scared. There was not enough fluid around him, once we got to the hospital they said he was fine but we had to get him out through an emergency C-section! The night before I was begging Alissa to pack her bag, she felt like she had time and didn’t listen to me! Now we were at the hospital and she was frantically making a list of everything she needed me to bring back! I didn’t mind though, I was right and she knew it! I could not wait to meet Reece! I was ready to be a dad!
It was go time! Alissa was in the delivery room being prepped and I was in the recovery room. I was sitting there getting the camera ready, full of anxious energy, I couldn’t sit still. Finally they came and got me! I sat down next to Alissa and held her hand. She looked nervous. Just a few moments later they said “Dad, do you want to see?” So I looked over the curtain and sat right back down! He was half way out! Alissa gave me a puzzled look! I can’t even watch ER without changing the channel! Seconds later we heard him crying. I stood up and snapped a few pictures and couldn’t believe he was finally here! That was when it hit me that I was responsible for this little guy! I know that was a little late in the game to realize, but I am a visual learner! They showed him to Alissa and when they took him away to clean him off she asked me if he was OK. I looked at her like she was crazy, I said “yeah, he’s fine”. She later told me that she knew the moment she saw him that he had Down syndrome. I did not.
They brought Reece and me into the recovery room, I gave him a bath and then the nurse laid him in a crib. “We think he has Down syndrome.” Immediately I felt like everyone in the room was staring at me to see my reaction. In that moment my world came to an abrupt STOP! All the excitement that I was feeling was gone. This little baby who I had been waiting for was NOT what I had envisioned. I didn’t look at anybody in the room, I just asked "why"? She explained that his eyes were slanted up and he had a single palmar crease in his hand. The palmar crease is a straight line that goes across his hand. All people with DS have this. I just said OK, and kept my head down. She then asked if I wanted her to go tell my wife which I replied "no", I wanted to be with her when she dropped that bomb on her. There I was, in a room full of strangers, nobody talking to me and my world crashing all around me. This was not part of our 5 year plan. This happens to other people, not me. This could not be my baby. They rolled Alissa in and told her the news. She looked at me for comfort but I had none for her. We didn’t really say much to each other in that room.
Family started arriving at the hospital a few hours later; we wanted some time alone with Reece before visitors. Until this point I was holding it together. I met her parents in the café, I told them what the nurse had said and that Alissa was emotional. Truth is, we both were. I wanted to prepare them for what they were walking into. It wasn’t the excitement that we had all envisioned. Once they all came in, I went outside to call my family. As soon as I started talking I lost it. I was broken. What did I do to deserve this? After talking with my parents I stayed outside and started praying. “God, why? I can’t do this, please don’t let this be true”.I felt guilty that this little baby who I had been so excited to meet was now the reason I was crushed. One of the major issues most people with Down syndrome deal with is heart problems. They had to do an echo cardiogram. At my lowest point, I thought that maybe he would have a major heart issue and if he passed then we could start over. As soon as that thought came in, I sent it back out. I know where that thought came from and I prayed that I would never think that again. I only share that because it shows just how hard this was for me. I could not believe that I would think that, the emotional ride that I was on was getting the best of me. I didn’t know what to do. They recommended we see a specialist; we took him to one a few weeks later. We are thankful that he has no heart condition; almost 50% of people with Down syndrome face heart issues.
We spent five long days at the hospital. Everyone was treating us like he had Down syndrome while we were holding out hope that he did not. We had not received his official karyotype test results. We refused to accept that he had Down syndrome until we saw the test. One visitor was too much for us to handle. A social worker came in with a folder that had pictures of kids with Down syndrome on it and as soon as we saw it, we both shut down. She talked to us and we just sat there I honestly don’t remember a word she said. All I could see was that folder. I was not a part of that world; I refused to think that he would be like those kids. She admitted that a lot of families don’t even look at this folder and refuse to open it. We were one of those families. As soon as she left we knew we needed to get out of our room, just to avoid any more visitors like that. We went to the garden area just for families on our floor. It was hot, but we didn’t care, we needed to get out and breathe.
You might just see a beautiful mom holding her baby, but I see the hurt and pain that we just went through moments before I took this picture. Every time I see this picture, it reminds me of that moment and the feelings come back.
We were finally discharged from the hospital; I admit that I do miss the cafeteria food. Contrary to popular belief, it was good! Random thought, I know! We were thankful that he had passed a few tests that they performed. His heart was good, his thyroid levels were fine, and he was feeding. We left the hospital still not knowing if he, in fact, did have DS. I think we both knew he did but we were hoping that they were wrong. It was an emotional ride home. Any parent will tell you that when you are going home with your first born child, you do not feel like you are ready to be on your own. Take that and multiply it by 1,000 and that’s how we felt. We had no idea how to raise a kid with special needs.
So now we were home and visitors were stopping by, friends and family were calling, and Facebook messages were coming in. Only a few people knew what was going on. We tried to hide it. I remember taking pictures of Reece and deleting them if I thought you could tell he had DS. I was still hurting.Family and friends that knew were saying all the things that you tell people in our situation. "God chose you. Out of all the people that I know-you guys are the ones who can handle this. Reece was born into the perfect family." (Because my father-in-law and sister-in-law are special education teachers). I know everybody meant well, but what I really wanted to hear was: "this sucks, I am sorry, and I am mad with you." The next few weeks I was having some open and honest talks with God, but I felt that they were one sided. I would vent, I would tell him how I felt and I would get nothing in response. No peace of mind that everything was going to be OK, no comfort from reading His word, and no relief from the guilt I was feeling from the negative thoughts I had. To be honest, my thoughts were selfish, I was worried about what everybody would think, that people would stare at us. That we would be treated differently and that he would not be able to play sports and play on those little league teams that I was planning on coaching. My ego was one of the biggest hurdles I had to overcome. One day when I was driving to work complaining to God about how unfair this was he slapped me in the face! Not literally but this thought came to me, IT’S NOT ABOUT YOU! Reece is your son and he needs you! Lay down your pride! He finally had enough of my complaining. That was a turning point for me.
I knew what I needed to do but I was still overwhelmed. I spent countless sleepless nights reading about DS online and watching videos on YouTube. I struggled with going to work every day. I work with kids on a daily basis and they are all typical, excelling kids, and then I go home to a child with special needs. I saw all the things that these kids were doing and learning and I would get jealous that Reece would never be able to do them.I now know that those feelings were wrong!
Another turning point came when I was listening to the radio and they read this poem by Russell Kelfer:
You are who you are for a reason.
You're part of an intricate plan.
You're a precious and perfect unique design,
Called God's special woman or man.
You look like you look for a reason.
Our God made no mistake.
He knit you together within the womb,
You're just what he wanted to make.
The parents you had were the ones he chose,
And no matter how you may feel,
They were custom designed with God's plan in mind,
And they bear the Master's seal.
No, that trauma you faced was not easy.
And God wept that it hurt you so;
But it was allowed to shape your heart
So that into his likeness you'd grow.
You are who you are for a reason,
You've been formed by the Master's rod.
You are who you are, beloved,
Because there is a God!
I have read this poem many times, and it has helped me through some tough moments. I know that Reece was meant to be with us. I don’t believe that God plans on giving people children with special needs, that doesn’t make sense, why would God allow someone to live a life with disabilities. What I do believe is that God is there for you to help you through the tough times. I found a verse that I applied to our life: Romans 8:18, "The pain you are feeling cannot compare to the joy that is coming." It is a simple verse but powerful. I wish I could go back to the day Reece was born and tell myself that, in time, you will see that Reece is the biggest blessing you will ever receive. That you will love him unconditionally and that you will know what it really means to love someone else. I would say that it is important to go through what you went through though because you really do feel like you need to mourn the death of the child you thought you were going to have. In less than two years he has taught me so much. I love him and could not be more proud to be his dad!
I have since learned that the bomb they dropped on me in the hospital when they said they thought he had Down syndrome, was really not a bomb at all. It was just a part of Reece that makes him who he is! All the things that I thought he wouldn’t be able to do, all those hopes of little league coach of the year awards I was going to win are back on! DS is not a death sentence, it does not mean that Reece won’t be able to achieve great things; all it means is that he will achieve them in his time! Besides, he comes from a family that is NEVER on time for anything! Reece continues to amaze me with achieving new things all the time. This is a journey that I never planned on taking, that I wouldn’t have chosen on my own, but a journey I am glad that I am on. It is amazing to me how far we have come with this. To be honest, I forget that he has DS, he is just another boy that is fast approaching the terrible two's and he is a handful! Just ask the nursery workers at church. If you are friends with me on Facebook you know that I love taking pictures of this kid! That I am unashamed of the DS and I proudly post pictures of him at a nauseating pace! I will be his biggest advocate and I will push him to achieve all that he wants to. I will never be a hurdle that he will have to overcome; I will be his biggest supporter. Reece is going to dream BIG! The latest go-to verse is this: Psalm 71:14, "As for me, I will always have hope; I will praise you more and more." I have hope that Reece will live a life full of joy, full of hope, full of love and happiness. If you have met him then you already know he is full of love and joy and has a smile that is contagious.
Parents, I know that there are times your children drive you nuts, and that you need a break from them. Trust me, I was one of those kids, just ask my mom. Be there for your kids; support them in what they love to do. They may teach you more than what you think is possible. Don’t take for granted that you have a typically developing child. I know that Reece will achieve great things but I also know that there is going to be challenges down the road, we are going to be ready to face those challenges! I am so grateful that I have Reece in my life. I pray that you and your children have the bond that I have with Reece! I can honestly say that I am OK with his diagnosis. Down syndrome is 3 copies of the 21st chromosome; just remember that there is a gene for awesomeness, and Reece has 3 Copies!
Thank you to Alissa, who allowed me to write this on her blog.She is an amazing mother to Reece and is a huge reason why he is doing so well! Thank you for being a great momma, love you!
***I’m partnering with the International Down Syndrome Coalition (IDSC) in celebration of World Down Syndrome Day (WDSD). Bloggers who write about Down syndrome were asked to write a post and share today on 3/21 – which stands for three copies of the 21st chromosome. This year’s theme is “Who I Am”, so please take a moment to read my take on this theme and view the beautiful video created by the IDSC.***
So, your baby walks, talks, is out of diapers, can say the ABC’s, count to 10 in Spanish, and you haven’t even left the hospital yet?! Clearly that’s an exaggeration, but the real question I’m getting at is why do parents feel the innate need to share how early their child started doing things? As parents, we fall so quickly into the habit of comparison, something I’ve heard described as “the compare snare”. It is two-sided really. One side is quick to brag about accomplishments and the other side feels like they are failing as a parent because their child isn’t on the same time table for that same accomplishment. This “compare snare” can cause quiet dissention between friends, crippling thoughts that you are doing something wrong or not doing enough.
I can be real here, right? In five years, will it matter when they learned to walk? No, what matters is that they walk. It’s like a high school or college GPA…does it really matter once you’re in the work force?What can we do, as parents, to change this? I want to encourage you to rethink questions between each other, to intentionally think about this idea of comparison. I want to know about your child, about his or her personality, not necessarily what he or she has accomplished. Instead of asking “does Bobby walk yet?” ask “what makes Bobby laugh?” There is a huge difference between those two types of questions. The first may make a parent feel uncomfortable answering because their child may not be walking yet – I personally fit into that category. The second allows most everyone to answer, and who doesn’t love sharing a fun story of how they’ve gotten their child to giggle?!
I recently read a poem that describes this idea of comparison in a way that I think we all can relate to in one way or another:
Reaching –
Sometimes I wonder where it comes from?
This idea of reaching, you know, wanting more?
It seems like it’s all I can remember from the moment I was born.
My mom says people wanted to know my length and weight,
And told her about how big their babies were with a size chart for debate.
It didn’t stop there though, following me through school.
We compared who took the first step and said their first word,
Who sat on the potty and who was first to drop friends at the pool.
Was I the teacher’s pet? Who could go the whole way on the monkey bars?
Who could run the fastest and get straight A’s and be so smart?
In junior high, I wanted the clearest skin,
But those darn pimples kept popping up like pins.
Who got asked first to the dance?
Did that girl really like me, or did she really like Mike Vance?
I tried not to worry, I tried not to see,
That so many others seem to be creeping ahead of me.
The years to come didn’t get any better as I reached for more,
When can I get the best smartphone and drive the best car?
How many friends on Facebook do I have?
What about my first date?
Does it really matter what label I wear? I was so caught up just in case someone might stare.
But the reaching never stopped, I kept wanting more.
Whatever everyone else wanted, I wanted it before.
What college would I go to? Would I marry someone they all liked?
Is my career what I’m passionate about or would it merely buy that new motor bike?
We searched for a house to live in but they all seemed too small,
My best friend just bought one on the nice side of town.
It wasn’t just me that seemed to get caught inside the frame,
My kids were growing up and acting just the same.
The bumper sticker on my car said my boy was smarter than yours,
He was an honor roll student and played nearly every sport.
And we grew as a family with things and such, always reaching for what was just out of touch.
Hoping and praying that we could do anything we wanted -if we just believed.
Hoping no one really was looking inside our hearts too, deep.
Trying to be better than anyone else around,
Trying to get ahead rather than slow down.
And see life couldn’t be found…In the buying and selling of stuff on this earth.
Filling our hearts to cover the hurt.
And, now that I’m older, I’m wondering about the end.
Who will attend my funeral,
Will my casket be made of wood or some new plastic trend?
Did I save enough so I can live just like I used to,
Or will I be stuck in a home with a small window view?
Looking back, I wished I done less looking, to see if the person beside me was better than me.
I wish I had done less reaching, less focusing on the more, for all I want now is for someone to come through the door.
To let me know I’m loved, that who I am was enough,
I wish I would have let God know He was bigger than all the stuff.
Now it all sits in an 8 by 8 frame, rotting and piling with dust,
Where moths can destroy it and thieves can lust.
For where your treasure your heart is, not in the reaching for more,
But in simply believing beyond this life is what’s at life’s core…
Sometimes I wonder where it comes from?
This idea of reaching, you know, wanting more…
Author: Rempel, Mark A. (Copyright 2013)
Today, we celebrate World Down Syndrome Day (WDSD). A day to spotlight the sweet ones in our lives who rock an extra chromosome. God created each one of us to be unique. He was purposeful. You are who you are…and that was His perfect plan. “I praise you because I am fearfullyandwonderfullymade; your works are wonderful, I know that full well.” Psalm 139:14
TheIDSC chose “Who I Am” as this year’s theme for WDSD. I love it because it is so incredibly all encompassing. It is a powerful statement that shows others how you view yourself. And, since Reece is a little too young to tell me who he thinks he is, I took the liberty of selecting what he might say:
Take a moment to view the beautiful "Who I Am" video created by the IDSC to celebrate uniqueness on this special day:
For a complete list of bloggers participating in the IDSC World Down Syndrome Day 2013 "Who I Am" campaign, click here.
I sit, motionless, still reeling from the words I had just
heard. The words ache in my ears. The tears don’t come just yet, but they are
beginning to burn fiercely as they well up. Then, like a flood gate they flow,
almost unending for days on end…
The words, you ask? Confirmation. Science in its boldest
form. Trisomy 21. Three copies of the 21st chromosome. DOWN
SYNDROME. There they were again…this time in print, so I could torture myself by
reading them over and over and over.
I had been holding on to hope for nearly two weeks. This hope,
resembling a strong woven rope, was holding me up, helping me through each day.
Hope that our new little baby didn’t have to live under the label that doctors
and nurses casually slapped on him when he was born. The karyotype blood test
had been performed on Reece in the hospital when he was only two days old, but the
results typically took two weeks to come in. Two weeks to stare at him and
convince myself that everyone was wrong. Believing that his almond eyes were
just a unique feature, and the palmar creases in his hands were passed along
from a family member, after all, my grandmother has the same creases and she doesn’t
have Down syndrome.
Our appointment with the pediatrician was on a Monday, a
sweltering, August Monday. It was my actual due date for Reece, but the little
man decided to surprise us two weeks early. This was the day we were going to
get the karyotype blood test results. I dragged that hope into the exam room,
feeling the rough fibers of that rope between my fingers, it was holding me up
just as it had over the last fourteen days. Waiting for the doctor to join us
in the room was beyond nerve wracking and all I could do was pace the floor,
five steps this way and five steps back. We waited, knowing on the other side
of that door were results that would determine the course of this little boy’s
life, our life. Jeff held Reece as I paced and for what seemed like forever, and
we waited.
The door swung open and in walked the doctor holding a crisp
white piece of paper. I took a seat in the lone chair in the room and braced
myself for the news. Without as much as a hello, the doctor said, “Well, we got
the results…and he does have it.” My hope began to unravel faster than I could
hold the rope together until it swiftly dwindled into the smallest of threads,
eventually snapping from the pressure of the blow.
An avalanche of sorrow fell on my shoulders and with that I
began to cry. Seeing my tears, “Oh, I thought you knew?” the doctor callously questioned.
I couldn’t even believe that there could be anything but encouragement coming
from her mouth at a fragile time like this, and I wanted to scream at her “NO!
I didn’t know. I didn’t know he had Down syndrome for sure, but now I guess I
do…don’t I?” But instead, I maintained my composure and asked for some time
alone. The remainder of the appointment is a blur to me, but the reality of
Reece’s diagnosis was painfully clear.
A quiet knock, as not to wake the sleeping baby, who was now
just a few weeks old. In walked a representative from a local Down syndrome
organization, who called to request a visit with us shortly after we received
our heartbreaking news. It took everything within me to accept her invitation
as I was walking through a very dark place and struggling with acceptance. She
was a kind-hearted soul who had a child with Down syndrome of her own. Finally,
someone who really understood what we were going through. She gave us a new
parent welcome basket filled with information and gifts, which I’m embarrassed to
admit, sat in a corner for months before it was even touched. But it wasn’t the
gifts she gave us that stuck with me, it was what she said that turned out to
be the most precious gift of all.
“What you’re feeling isn’t good, isn’t bad, it just…is. And
if I had a magic wand to wave this all away, I wouldn’t even do it, because you
have to experience this heartache, this pain, this sadness to get to a place of
true acceptance.”
There it was. Something I didn’t want to hear at the time,
but now look back and know it was exactly what I needed. It went far beyond the
“I’m sorry” that most people whispered with best intentions when we told them
our news. In my heart, I knew we were not alone. How many parents had already
navigated this path we were beginning to tread?
And now, 19 months into this journey…I can honestly say, if I
had a magic wand to wave it all away, I wouldn’t even do it, because I did need
to experience that heartache, that pain, and that sadness to get to the place
of true acceptance that I find myself in now.
