Nobody told me that…..
you would be born at 35 weeks.
you would spend six weeks in the NICU.
you would have an NG tube.
you would come home on oxygen and that I would lay awake at night worrying about the cord and fearful that the prongs would end up around your neck.
we would be followed by vision, hearing, pulmonary, cardiology, neurology and ENT clinics.
I would have to hand my baby over to nurses and doctors and pray that surgery goes smoothly.
I would cry myself to sleep some nights, worrying about your health and your future.
I would have to advocate for you endlessly and go into meetings hoping that I don’t shed too many tears.
I would have to wait long past four years old to hear the words “I love you mom.”
our days would be consumed by speech therapy, occupational therapy and physiotherapy.
we would face ignorance and trolls.
you would take your first steps when you were 3.5 years old.
you would choke on foods that are easy for others to eat.
you wouldn’t be able to communicate your wants and needs at 4.5 years old.
I would resent others along this journey.
I would work part time so that I could shuffle appointments, therapy and school.
you wouldn’t be potty trained at 4.5 years old.
you would test every ounce of my patience.
that we would have to plan outings carefully, so that you would be safe and able to participate.
the paperwork would be never-ending and sends me over the edge.
some days I wish the earth would swallow me up.
Nobody told me that…..
you would take my breath away the first time I saw you.
I would be able to hold you, cuddle you and spend hours with you in the NICU.
I would be able put the NG tube up your nose and down your throat like a champ.
that oxygen would save your life.
I would come to love the doctors and nurses at all (most) of the clinics.
a nurse would tell me that she would take care of you like you were her own.
although I shed tears, I am strong.
I would advocate for you always because I am your mom.
you would blow kisses and your body would melt into mine and this is how you tell me that you love me.
I would love the bond you have with your therapy team and how they would do anything to see you reach the next milestone.
people from all over the world would fall madly in love with you.
when you took your first steps, we cried, we celebrated and you ran towards your sister.
we would sit at the dinner table, take our time, talk about our day and enjoy family time.
you would learn new signs with ease and you try your hardest to communicate your wants and needs.
I would meet the most amazing families along this journey and that we would support each other….always.
I would have the opportunity to work part time, so that I could be a part of your therapy, appointments and schooling.
you just looked at me and told me that you pooped. We celebrate.
you would teach me to be more patient, slow down and relax.
we have been able to experience and explore new environments as a family.
although the paperwork is overwhelming, the government (for the most part) and community are supporting us along this journey through funding and programs.
although there are days where I struggle, my world has become a little brighter, filled with more joy and laughter, all because of one extra chromosome.
“I am thankful for what Down syndrome has done for our lives. I am allowed to feel defeated and show weakness because I am human, I am a mom, I am good enough for this role. I will stumble many times, but I will always get back up on my feet and will be grateful for the blessings that surround me.” Krista Rowland-Collins