Baby Emelia Brings a ‘New Normal’ to Our Family

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by Prudence Jones |

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In August, my 2-year-old son, Alfie, became a big brother. While bringing a new baby into the world is an important life event for any family, when you are already raising a child with LAMA2-related muscular dystrophy, there can be even more to contend with.

For about six weeks after the birth of Alfie’s baby sister, Emelia, I was unable to lift him. That was a big change for me, because at times, I’ve almost felt like Alfie and I were Siamese twins — I carry him everywhere — and I had to sit back and let others take the reins.

I was pretty terrified about all of these changes and wondered how we would handle them. Our lives have already felt so full and busy. However, we have been blessed. Our new daughter has become a part of our lives as though she has always been here, and it has been such a wonderful time full of love for our family, despite being in lockdown due to the pandemic.

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Alfie has shown us that while transitions can be hard, he is so resilient and amazing.

But it has been tricky for me, as his primary caregiver, to sit back and let others take control. I can be a bit of a control freak, particularly when it comes to Alfie and his care, routines, feeding schedule, and therapies. But I have been able to see his relationships with those who have taken my place blossom and grow. And I have come to appreciate that Alfie is surrounded by people who are entirely capable, can keep up with his busy schedule, and shower him with love.

I know we will face challenges along the way. There will be times when parenting a child with a disability and one without won’t be easy. However, I know that Alfie and his sister will have a bond like no other, and I’m so glad they will have each other to get through it all together.

Now that I am allowed to lift him again, all of our helpers are returning to work, and I’ll need to find our new normal. It may take another short period of adjusting to juggle all of Alfie’s needs and appointments along with those of his new little sister, but as I’ve learned so far with everything that has been thrown our way, we will get there.


Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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