The Beginning

 

One year my husband gave me a tacky beer cozy–you know those foamy cups that insulate your bottle? “This is not the life I ordered” was written across it in neon letters. It was a silly gag gift for an occasion that I can no longer recall. Recently I dragged it out from a box in the basement and announced that from now on, I would be using it to hold all of my beverages because this is NOT the life I ordered!

I lucked out in the husband department, I love my children immensely, friends and family abound. Overall my life is blessed, so I should probably clarify

I wouldn’t trade being my daughter’s mum for anything. Maybe it’s because I love her so deeply that being her mother is all the more difficult. Avery breaks my heart a little bit, in some way, every day. Happy moments, sad ones, fearful, worrisome, desperate moments– they all have an effect on you as a parent, as a person really.

When Avery was four months old we had concerns which we addressed with our family doctor. She was not gaining weight, refused to nurse or drink from a bottle and was not achieving the milestones associated with her age. By six months we were worried. At seven months we were afraid. Our family doctor, who we adore, was at a loss. She suggested we do some genetic testing and in the meantime she referred us to an experienced pediatrician. I took Avery to see this doctor several times. On the last visit, near tears, I begged him for help. I told him that I knew that something wasn’t right.

He said, “You just need to relax. Women have been feeding their babies for thousands of years. You just need to try harder. She’ll be fine.”

Was this my fault somehow? I never went back to see him again.

I had also taken Avery to see another “expert” pediatrician whose advice was ridiculous and downright negligent. After explaining that Avery was losing weight and that her urine had an usual odour, she suggested I try feeding her fattening foods like cheesecake and crème brulee. Seriously? I reminded her that my child refuses food. ALL food. This was not a reasonable solution. She told me to give it a week and we would “wait and see.” Wait and see if she would fade away? Collapse? Die? What exactly were we waiting for??

I did not wait and see. Instead we went to Sick Kids Hospital emergency. They examined Avery and told me that she had a severe urinary tract infection, that she was dehydrated and “FIT” (failure to thrive). The doctor shook his head and said, “This child should have been here a long time ago.”

No shit.

They admitted her and were going try to figure out what was going on.”

I cried my eyes out—both out of frustration and relief. Finally somebody was going to help us.

When the genetics results came in we learned that Avery has some faulty DNA. Her condition is rare so they couldn’t tell us what the future held, but the geneticist suggested we focus on giving Avery the best care possible to maximize her potential.

So that’s what we did. It’s what we are still doing.

As time goes on we continue to discover more about the challenges involved with her chromosomal deletion disorder, but we’re also learning lessons about resilience, determination, and the power of positivity.

This may not be the life I ordered, but life is good.

It helps not to look too far ahead (or Google the hell out of things that may never happen) and to try to remember to look back to marvel at how far we’ve come.

I’m a mother. I feel hopeless and hopeful and fearful and grateful. But isn’t that the same for all mothers, no matter the circumstances?

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  • What a journey! Unbelievable – the advice you were given by all those professionals. I can't believe you were made to feel like it was somehow your fault. Thank goodness you trusted your instincts and took her to the kid's hospital. And yes I do think all mothers experience those contradictory feelings you mentioned at the end – I know I do.

  • HUGS Mama…it's like reading my little girls story, except her's went on much longer and resulted in her almost dieing. She was also failure to thrive with severe GERD. When I confronted out GP, who we don't like, at 5 weeks old I was told my daughter was throwing up because she was rolling around too much.
    Long long story made short, my daughter is now 2 1/2 and doing pretty good, but still suffers from GERD, bowl problems, GED and autism. All her genetic testing came back normal, but it wasn't a full panel that was done!
    I look forward to reading more of your blog!

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