Nothing down about it. Do I truly feel that way? Let me tell you.
Oakley Peterson of Nothing Down About It was the first Down syndrome parent that I met. I had never heard of her blog before Indy, but had a sweet friend tell me about it when Indy was a couple days old. I scrolled through every single photo and read every caption on her Instagram while I sat in the NICU. I was desperate to see normalcy. I was desperate to see happiness, love, and joy in a family that had an unexpected surprise like we did. A surprise that I was utterly devastated about at the time. Seeing pictures of this adorable little boy with Down syndrome, who was clearly the light of his family, gave me so much hope. I looked at this family and felt peace. I felt that we were going to be okay.
When Indy was 6 weeks old we were invited to an event that Oakley & Welles were going to be at. I was nervous but excited to meet them and get an idea what my future might look like. There ended up being two families at the event that had children with Down syndrome (Sweet Benny, @blueskieswithbenny). Both families were so kind, supportive, and their children were amazing. However I left that night and cried the whole way home. I still wasn’t ready to accept this as my future.
A month later a few of us mothers got together for dinner. I asked Oakley if she HONESTLY felt that there was nothing down about down syndrome. If she honestly felt that Down syndrome was the best thing that’s ever happened to her. I wondered if she ever got sad about it. She responded with passion and declared “YES! I honestly feel like we are the luckiest people in the world! I would not trade Welles or Down syndrome for the world. I wouldn’t.” I admired her for her strength and confidence. I wondered if I would ever feel the same. Of course I wouldn’t trade Indy for the world… but at that time I probably would have handed over her extra chromosome with a sigh of relief.
Let me tell you how I feel now. Indy is the best thing that has ever happened to me, B, and both of our families. She has increased my capacity to love ten-fold. She has opened my eyes to what really matters in life. She has taught me what it means to have charity, to be humble, and to have a graceful heart. Because of Indy I understand what pure love is. I have more patience and more compassion towards others. I feel a greater ability to accept myself and others for all of our many differences. I am without a doubt, a much better human because of Indy. I truly feel that we are a part of “the lucky few” that get a little bit of heaven in our lives every day.
There are challenges, health and otherwise that accompany Down syndrome, and can be difficult at times. At times I get sad about the different health challenges Indy has faced or may face in the future. Some times I get overwhelmed thinking of what her future might look like in all aspects, because as parents we all want to see our children happy and well taken care of. I think its natural to worry and wonder. I try really hard to take one day at a time and not think too much about the future, because after all, the future is just made up of a series of days. So far… our days with Indy Llew have been so sweet and full. If this is what the future holds we have absolutely nothing to worry about.
I don’t want to dismiss the challenges or fears, because they are there. Sometimes they consume me- but most times I am just consumed by how much I love and adore Indy, exactly how she is. I honestly feel that what we have been given from Indy far exceeds any challenges or struggles of mind. I can confidently say that in 10 short months, I feel the same as Oakley. I wouldn’t trade my life with Indy for the world and I am so happy for the change of heart that has taken place within me. I am grateful for a reason to live for more.
On 3-21 we celebrated our first WDSD with many of our new, amazing friends. It was exciting to have a new holiday to celebrate ( 😉 ) and so fun seeing all of these sweet children in one place.
We were shown so much kindness from Kneaders, Chik-fil-a, The Sweet Tooth Fairy, and Noah’s event center who pitched in to sponsor this event for all of our families. Thank you!
I feel so grateful to have met all these wonderful people who have supported me over the past 10 months. We have all been brought together by a chromosomal mishap, that has made each of our lives fuller, happier, and better. I can promise you, every one of these families would proudly declare- that there is Nothing Down About It.
Much Love my friends.
8 Replies to “Nothing Down About It”
So beautiful!!! We all love Indy
Terah, you write your feelings so eloquently it sometimes makes me feel I am living this life along with you. I love all the pictures of the three of you and open Facebook every day hoping to see new ones. Keep up the good work you are doing for all of us by your beautiful writing. As Krista would say ” carry on!”
Thank you so much for following our journey Lyn! I love and appreciate your support and sweet comments 🙂
My first baby was born with a single kidney, not two. He is the reason why I live and smile everyday, but being honest, of course I would LOVE that he had his two kidneys and could play football, tae kwon do, box or whatever sport he likes when he gets older, but he will never be able
Because he has to protecr his only kidney. So, it is so honest from you to say that of course, you wish Indy did not have that exta chromosome, nothing bad about admitting the truth, we all wish we could give the world to those kids !
Thank you for sharing your story. As parents we all want what is best and easiest for our kids, of course! But the hard things are what make us appreciate the good 🙂 Sending love to you and your son! XOXO
This is beautiful, inspirational and honest. As an educator and a mom, I love your message. Your pictures and words no doubt bring joy to others. Keep it up!
Thank you for your story. I can assure you your family is one of the lucky ones, my daughter Audrey passed away when I was 34 weeks pregnant and she had down syndrome. No matter the challenges of a life with a child with down syndrome I would take them all to have her with us. All the best to you and your family.
I just wanted to reach out and say I’ve followed your journey for a while now and I am sorry that your family and your sweet little girl is suffering so much. I know you did IVF and I know they usually perform genetic testing before choosing which embryos to implant, I’m sure Indy’s treatment and everything along those lines is very financially taxing and I just wanted to see if you ever thought about sueing the clinic that missed her Down syndrome which contributed to her being more likely to suffer from cancer, I feel like they should be the ones paying for all of her treatments and ensuring that she gets the best possible medical treatment. You battled so much already, infertility and then now your only child being so ill and also having Down syndrome, I hope they can be held accountable for missing this before she was born so you could have better prepared for this journey ahead. I am sending you so much love and light she is so lucky to have such amazing parents like yourself