Why making kindergarten valentine bags brought me to (happy) tears

A mother and son celebrate a very special Valentine's Day

Keara Engle avatar

by Keara Engle |

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Last week, my 5-year-old son, Cayden, and I spent a few hours preparing for his Valentine’s Day celebration at school. He’s in kindergarten, so it’s the first year that we got to make Valentine’s Day cards for his class. We even took it a step further and filled goody bags with candy and a few small toys.

While most parents do this activity with their children at this time of the year, it felt a bit more special to me. Not only was it my first time doing something like this with Cayden, but I also honestly never knew if he’d make it this far in life.

When Cayden was only 1 month old, he was diagnosed with infantile-onset Pompe disease. We were fortunate that doctors caught it early thanks to newborn screening. However, discovering that your child has a rare and serious disease is devastating. A million thoughts ran through my mind. It also didn’t help that a lot of the information I read online about Pompe disease was outdated and inaccurate.

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My precious valentine

Cayden spent months in the hospital after he was diagnosed because his heart was so damaged. My perfect little newborn was struggling and there was nothing I could do about it except trust the doctors and nurses to help. Thankfully, Cayden’s heart made a full recovery, and he hasn’t experienced heart failure since.

Everything was fairly good for a few years, but then traumatic events happened when he was 3. Cayden got sick twice and ended up in the hospital for months. The first time, he experienced a horrible case of pneumonia and was intubated for weeks.

At the time, doctors told me that Cayden would need a tracheostomy tube to breathe for him because his lungs weren’t recovering. They told me that if I didn’t agree to the surgery, Cayden might pass away. This was news I couldn’t bear to hear. I remember screaming, crying, and begging the doctors to “save my baby!”

Finally, a few days later, one of the doctors was able to get Cayden breathing on his own again without the need for a tracheostomy. I couldn’t have been more thankful. I wasn’t ready to let my baby go. I didn’t want to experience life without him. And I’m so glad I don’t have to!

It warms my heart that I get to see my son experience normal childhood activities. He enjoys doing almost everything that other kids his age enjoy, including making Valentine’s Day goody bags for his classmates. The joy and happiness I saw in him that day is truly indescribable and made me tear up.

Cayden is such a sweet, kind, funny, warm-hearted little boy who doesn’t let his disease define him. What I love most is that he finds ways to enjoy life. I wasn’t even sure I’d get to experience these moments with him, but boy, am I glad I can. I can’t wait to see what the future holds, and I look forward to filling out Valentine’s Day cards with him again in years to come!

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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