Your Loss

 

I celebrated my 41st birthday last month. And as I reflect back to the previous year you would think that I would be glad to have my 40th year in the books. Heck, I was surprised by an unexpected pregnancy, received a pre-natal diagnosis that my son had Down syndrome, cared for him for 17 days in the NICU after duodenal atresia surgery on day four of his life and then watched him have open-heart surgery at 4 ½-months old. Definitely not the easiest chain of events. It wasn’t at all what I expected year number 40 of my life to be. But I don’t view it as the worst year of my life. And actually in some ways it is one of the best. It is the year that stretched me in ways I didn’t know I could, it challenged my weaknesses and pushed me to a new level of emotional and spiritual maturity and it opened doors to adventures and opportunities I am still unveiling. And most importantly I received the gift of a beautiful son who brings so much joy to my life. Don’t get me wrong, there were some very dark days and a lot of tears in year number 40, but what I gained this year cannot be overlooked.

I recently had somebody confide in me that they received a pre-natal diagnosis similar to mine. She didn’t do the amniocentesis so it wasn’t for sure, but they were preparing for the possibility as they chose to wait until the baby’s birth to confirm. I knew she had to be just as scared as I was and I did my best to help her realize it was going to be ok either way. She was really hoping that it was a false positive. She eventually gave birth and so I checked in with her to find out if her baby had Down syndrome. She responded by saying, “Well, we got the good news we were hoping for, she doesn’t have Down syndrome”. And without any hesitation I thought “Your loss”.

What?

Your loss?

I couldn’t believe that this was the reaction from the girl who spent day after day pregnant in a dark cloud anticipating the arrival of a baby she didn’t even think she could love or know how to love. I was the mom who thought my life was over and that this child would ruin my life. I was someone who used to feel so uncomfortable around people with special needs. And now I felt someone was missing out by not getting a Down syndrome diagnosis?

Shouldn’t I be feeling jealous of her “good news”?

I couldn’t believe it. Do I actually think that having a child with Down syndrome is a positive thing? A blessing? A good part of my life? Do I believe that those that don’t get this experience are missing out?

I do.

This was yet another turning point for me as I continue to grow with Cody. And don’t get me wrong I would have felt the same happiness and relief that this mother did if Cody was born without Down syndrome. And I do know that our life with a child with Down syndrome is going to bring big challenges and more hard days and more tears and frustration. And I don’t expect or think people should hope for a child with Down syndrome. But what I do know is that life with Cody is wonderful and if you do receive the gift of a child with Down syndrome it is not a bad thing, you have not lost … you have won.

 UPDATE ON CODY: Cody has made so much progress since his heart surgery. He is now rolling over, smiling so much, recognizing everyone around him and holding his head up with ease while doing tummy time. He continues to be such an easy baby to care for. We recently did take him to the cardiologist for another follow up to his surgery. Although everything looks good regarding the holes that were closed up, the doctor did find another area of concern. It appears that Cody may have pulmonary hypertension that is causing mild tricuspid regurgitation. Obviously this was not easy to hear. We thought we would have a break from health issues since his heart surgery was done. But that does not appear to be the case. This condition is currently being managed by medication and we return to the cardiologist next week to see if anything has improved. We are hoping that medication will be enough to heal his lungs and that no other major surgeries will be needed and that there will be no permanent complications. Cody does not have any concerning symptoms and he is a very happy baby. We are hoping  that those are signs that he is doing well. Thank you for your continued prayers for Cody.

 

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2 thoughts on “Your Loss

  1. Emily Begnaud

    Amen! As a mother of a 8 month old with Down syndrome who also recently had heart surgery, I can relate to almost every sentence. He brings me so much joy, yet there are hard days. Praying for Cody’s pulmonary hypertension to clear up.

    Like

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