Down Syndrome- What I Would Have Told Myself in the Beginning

Down Syndrome- what I would have told myself in the beginning if I had only had the words.  I was broken back then, but I healed faster than I thought possible.

But back in the beginning, I heard the two words, Down Syndrome, and I cried.

I cried because I was scared, I cried because I was ignorant, I cried because I didn’t know what else to do.

I remember very clearly thinking, will these tears ever stop?

I have always been a happy person, I smile at strangers, I always find the light in every dark situation, I am perpetually optimistic, but I couldn’t smile an unforced and genuine one.

I remember wondering, will I ever be able to freely smile again?

I have now had time to process, it is a different journey for all of us, mine was relatively short before the tears slowed and the smiles returned.  In fact, it was not too far into our Tour of Holland that I was actually able to start talking about Cedar’s Diagnosis without crying, for me, that was HUGE.

I know now that if I could’ve chatted with myself, even for just a brief moment, I would have told myself…

That it was all going to be just fine.

That my son was going to be amazing and cause so many more smiles than tears.

That the family of other moms that I was going to meet was going to literally blow all of my perceptions out of the water.

That I would actually be excited to tell and teach others about my son.

That I would be a totally different and way better person than before.

I found myself wondering what other moms would go back and tell themselves, I posed the question on Instagram and I found that we all wish we could become time lords and return to the point that we heard those two words that rocked our world with seismic fear.

Here are a few of the responses:

@downwithjohn I was never sad or ashamed. I was just a little confused because, I was 23 with 2 textbook pregnancies and children. I thought only “old” people had ds babies. My focus was more on his medical issues and him surviving. We loved him and embraced him the second we laid eyes on him, I knew he would have challenges and that was okay. I just wish I surround myself more in the ds community and someone told me how lucky we were. 11 years later. I feel like we are part of the most coolest, happiest club ever! We are so super special that we were chosen to be given this little boy as a gift. He never stops smiling and beams happiness and positivity! He has changed us and taught us so much, we have full thankful hearts. For any new parent, I would say welcome to the coolest club ever.

@nothingdownaboutemelina We were never ashamed neither, we were just afraid for her life.  I felt an instant overwhelming love that sometimes is so strong that it hurts. It is because of her that I am getting to know amazing , strong , beautiful mothers like you #t21momsarethebest and like you said , its like the coolest club EVER!

@ alex_mcnally I would tell myself it isn’t scary! Not to care what people think, and that she is   going to change so many lives! I know now that Teagan and I were meant for each other.

@berks.life.with_3.21Oh my, I have so much to say lol…first off, there isn’t anything “wrong” with my baby, everything that my baby has like tiny nasal passages, tiny ear canals, almond eyes, and a button nose could be seen as a problem for other babies but it isn’t for mine, things that can be called a struggle for others is not a struggle for her because she has more fight and strength inside than any other person. Things that would make me complain don’t make her complain, like a heart with holes in it, or a big tongue, or a hard time holding my head up, or the struggle to make my hands work how I want, they won’t make her complain. She does have a lot of work ahead of her but she won’t ever step down, she won’t ever stop trying, she won’t ever stop fighting! She will make me a better person every.single.day. she will teach me what pure happiness is and what unconditional love really means! I will be her entire world and she will be mine. She will teach me every day, she will help me to learn what inclusion means, and she will always greet me with a    smile and she will make me find myself, change my values, and reevaluate what is really important in life. She will get stared at by some, but she won’t notice, she won’t even care when someone comments about how she isn’t like them. She will be a warrior beyond anyone else’s capability of being a warrior and she won’t expect anyone to acknowledge her for that. She is one of God’s angel’s that walk among us and I have been chosen to be a part of her life. I am the lucky one that gets to be her side- kick. I am truly blessed beyond measure!

@t21holcomb I would tell myself that different is beautiful. I was a wreck the first few weeks. My thoughts were obsessed with the idea of a “loss”, I guess the “loss” of perfection or of a “normal” life. I was concerned my 2 1/2 years older daughter would be missing out on a “typical” experience with a sibling. I look back and I see how much I’ve changed and grown and it’s all because of my son. I realize that our life is normal and beautiful and yes uniquely perfect. I would tell myself that I have not lost anything in life, I have gained an incredible little human to guide me in a new direction and a new perspective of life. I swell with pride at every milestone and I am madly in love with both of my children. I hold my head up hi and welcome and questions about my so and our journey. I feel comfortable with our life being on a slightly different path. And I wish the women I am today was there to give the new mom in the NICU a huge hug.

@zanklaren There was nothing to worry about. All of the fears I had were just based unknowns but I soon realized that my son was not scary or even much different. He is just as sweet, as difficult, as happy, as sad as any other kid.

@supercalidadhubbyalidocious To not worry, it’ll be just fine, and he’s going to be the best teacher in your life, and brighten your day, every time he looks at you and smiles

@roxlvsjc I think I would tell myself to remember the ways that God had been preparing me for this child, even since I had been a child. Then I would say it’s okay to grieve because I felt a lot of confusion and guilt about that part.

@karenjp0915@cedars_story that ours lives would be so rich and full of life. I remember thinking how dark things seemed. I would tell myself how bright the future looks for children with Ds and how much more joy our son would bring to our living ❤

@nothingdownaboutemelina That she’s a baby , she is not Down Syndrome, she is not a diagnosis, she is simply my baby. ❤

@adriancito_jp Love is love is love!! Treasure it because it could be gone unexpectedly. 😘💛💙

@dark_cocolove It’s going to be a normal life, my kid is going to be awesome, my life is not going to be sad, my kid is going to be super cute, everything will be what I always hoped for, I will have challenges but the victories far outweigh the physical therapy and extra time we put into making life great!

@thesnyderclan I would go back and tell myself that grieving is normal and ok! I would tell myself it wasn’t my fault (I thought DS was a birth defect). I would tell myself that my little boy would be the absolute joy of our lives!

@eloisetemplar If only I could go back just 7 weeks ago, and tell myself, that the baby I had just given birth to, wasn’t going to be completely different to how I ever imagined her to be. That the 2 words Down syndrome is absolutely nothing to scared of and that the future isn’t something to fear but to be ready for, I would ask myself again, why would my life be completely different? Like I had thought in the beginning, because only 7 weeks in and so far my life has been the most happiest and full of love than ever before. Why was my heart aching and tears falling when I had the most beautiful baby in my arms. It was all because of the unknown, The unknown was what I feared not the reality. I didn’t have any insight into Down’s syndrome at all in the beginning and the moment I started to research and understand little by little my fears, heart ache , pain and anger turned into the most unbelievable amount of love for my new bundle of joy. She is everything I ever wanted and more and I am now just so excited for our future. Xxx

@heatherfhburton I would tell myself that my dreams for this baby and the reality would be a lot closer than I could have imagined. In fact my dreams would pale in comparison to what life with an extra chromosome is really like. Full of smiles and giggles and a love like no other. Beautifully designed with a calling and a purpose just like everyone else.

@noahsbigadventure I agree with @thesnyderclan! I would tell myself that it was not my fault and that this baby would steal my heart just as much as his brother. I would also tell myself to take it one day at a time. I worried so much about the future instead of enjoying the moment! Just love that baby and it will be ok ❤

@prop_ml I would tell myself: don’t be sad and have no fear. He will do the things you are afraid he won’t. And enjoy these little baby moments. He is gonna grow up fast!