What Should Have Been
April 1st. The day I had been eagerly anticipating for what felt like eternity.
The day was quickly filled with nervous anticipation and a flurry of phone calls being made trying to make arrangements.
This was happening.
It was the day I was going to become a mother of two.
I was ecstatic. J was over the moon. Eli knew something was about to change and was so cute and excited and he didn’t even really understand the reason. But he knew something special was going to happen!
One hour I was home with my oldest son and 1.5 hours later I was holding my newest son in my arms.
It all went down better than I ever could have anticipated (see here). I rocked labour and delivery. I was already joking about how delivery #3 better go down and I hadn’t even left the delivery room yet.
Little did I know what the coming weeks had in store for me.
I would be tested more than I ever dreamed. My son would be tested more than I ever wanted for any of my children.
The days after April 1st should have been some of the happiest days of my life but it was filled with worry, sadness, joy, tears, and grief. Lots of grief.
Grieving the life I thought my son was going to lead. Grieving the life I dreamt of for myself. For my children. For my family. But to be honest, mainly myself. Grieving the ignorance my sons and our family is surely going to face. Grieving the hard road we were dealt.
To say I was mad at the world was an understatement. I felt robbed of an experience that many others (including myself) got to experience in the past. I was lulled into a false sense of security after all these Doctors and Specialists telling me my baby was healthy and passed each prenatal test. But, little did they know there was a genetic syndrome lurking beneath the surface ready to reveal itself to the world on his birthday.
Knowing before would have helped, but not changed anything. We couldn’t fix the gene anomaly but I wouldn’t have been shell-shocked during the first weeks, even months, of his life. I would have known. I would have been able to prepare instead of sitting bedside with my iPhone googling all the terms I heard that Doctors and nurses mention. I would have been able to learn at my own pace instead of having everything thrown at me in a matter of days and weeks.
Google is a scary place, but it was a necessary evil. Through Google I did find an amazing, supportive community or two. At first it was too much to “see” that far into advance, and to be honest it still is some days, but the successes are right there for me to see. “These” families had the biggest smiles. They were happy!
I wondered how this could be.
I had no idea how hard it could be or how people accept their new reality. I marvelled at the other parents who were at peace in their lives after having it completely turned upside down in the blink of an eye. A completely unexpected blindside. I honestly thought I’d never get there. I’m still not there but I’m a lot closer than I was 5 months ago. Slowly after the 4 months since we’ve been home the love for Noah has overshadowed the obstacles and the delays, letting the light through of the many blessings that is going to be our journey. This isn’t to say I love him more now than I did during those days, because I have loved him with all my heart from the very beginning. I am just able to look past the negative feedback loop I had running and see the beauty of this journey.
This is not to say that I still don’t grieve or shed tears because that would be a lie. I do. I probably always will. It will be an ever changing process. Some days I will feel higher than high and others I get knocked down on my ass and kicked in the proverbial gut. But I will take each victory and scar and display it proudly.
So the thoughts about what should have been have changed. I now know all I need to about what should have been. These questions and those musings have stopped. Noah is “what should have been” and he is everything he was made to be.
I love when you write. You are rocking this and Noah will rock the world. We love you guys and wish we were closer.
I hope you can meet him soon! I need to see your littles soon, A2 is so big now and I only saw her when she was “new”. 😉
Google is a fine line of inform and scare. Noah picked a very loving family to come to !
Your post is one that I could have written!!! Though I only have 1 little boy vs. 2. I’m amazed at how our little ones are growing so quickly and am so thankful they are in our lives. I always love to see Noah’s progress as it usually means Colton will be there soon. Thank you for sharing!
Being a parent of a special needs child is both a gift and a challenge as these last 5 months have shown you. 14 years into my own journey, you eventually find clarity and one day it will resonate within you that this was the way it was supposed to be and its okay to grieve, you’re entitled to that. You take nothing for granted and rejoice in the most simplest accomplishments…your empathy and compassion are boundless. People say I am intimating…I’m not really but Cameron gave me the ability to speak my voice without worrying I would “offend” anyone. I tried therapies that “professionals” thought were a waste of time. I didn’t hesitate to be the “squeaky wheel.” I gave Cameron the ability to reach his “potential”…as will you. Being told your kid won’t talk, walk or be a contributing member to society lit a fire in my belly. Cameron shocked them all…Noah will too.
Thanks! I needed to hear that. I know all the “work” will be worth it in the end. Hopefully I can put my extreme shyness away and be the best advocate for him. I feel like I already know more than the “professions” here in our city.
Have you ever read the blog by Kelle Hampton? Her second was born with down syndrome and her blog is very similar to how you write. I find it really uplifting and perhaps you may as well.
Beautifully written. It gets easier. The grief subsides, though you’ll still get punched in the gut at times. You’ll be constantly amazed by all he accomplishes and the bond you form will help you bounce back quickly from bad days.
I know I’ll get there eventually! I can only hope that N will be as outgoing and active as your E. 🙂
Well said Laura. Speaking from the Grandmother’s point of view I of course had shared in the anticipation of his birth and the day you went into labour, I sat by the phone from the time I received your call and I couldn’t believe when I got the next call saying Noah had arrived, it was so quick! Once we found out that they suspected something wasn’t quite right, I felt the feelings of shock, sorrow, fear and confusion. Once the diagnosis was definite that’s when my tears really flowed. Knowing the hard road he has to travel broke my heart. However, as time as gone on I see just how strong you and John are and what a loving brother Elijah is to Noah that I know Noah came into the right family. I also, see just how determined Noah is and is making slow but steady progress so that is something to (however small or big) celebrate. Elijah and Noah are so precious to me that I really can’t put it into words! As you know, whatever way I can help, I am here for all of you even though there are a lot of miles between us right now. I love you all !
Love you Babe, as always well said!
Laura, you are an inspiration and such a beautiful person. I am moved by your words. Thank you for sharing.