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Infusing Love: A Mom's View

When I committed to writing this week’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s medical needs, which require the attention of his family, Via, Auggie’s older sister states several times throughout the movie that due to Auggie’s medical needs, which require the attention of his family, she feels forgotten about and that her parents show “little to no” interest in her or her hobbies. As a mother, we often struggle with treating our kids fairly. There is often a grey area between meeting each child’s needs, and treating each child exactly the same.

Almost immediately, Via’s admission of feeling like the “left out/neglected sibling in her family sounded familiar to how my older son, Zachary, has been feeling. I tend to favor my youngest son, Myles, who has severe hemophilia A. While it’s unintentional that I show any favoritism, I can’t help but spend more time with Myles, as it is my duty as a stay-at-home mom to be his primary caregiver. I take him to his weekly factor infusions at our HTC, various doctor appointments, school functions, and extracurricular activities. Needless to say, I spend much of my time with Myles and it’s causing Zachary to feel that I don’t love or want to be with him as much as I’m with his brother.

Lindsay_Siblings_quoteI have tried my best to avoid favoring one child over the other however, with all of Myles’s medical issues it has been difficult to  give equal attention to both boys. As a result, Zachary is constantly feeling lost and left out and is refusing to do things or go places with Myles and me. He has also voiced that he feels unloved and unheard within our household. I am constantly reminding Zachary that I love him and that there are no favorites. Despite this, Zachary is observant and he sees how much time I spend with Myles. I have tried to include him in more activities; such as helping with shopping, meal preparation, date nights, or special time with either my husband or me. I have even joined the PTA at his school and I’ve offered to help in his classroom or school when available. I feel extremely guilty because I never want to be that parent who favored one child over another.

Besides relating to this movie via my children, I am the oldest of three; my younger brother was diagnosed with developmental delays and Pallister-Killian Mosaic Syndrome or PKS, which is a chromosome abnormality. At times throughout our childhood I felt my parents spent more time and made family decisions based on Rob’s abilities and likes. I can say while growing up, I sometimes left left out or required to be more responsible and help out more where/when needed. I never really understood what and why my parents favored Rob until I was older and took an interest in Rob’s education, Special Olympics, and extracurricular activities. Now that I am a mother of two boys, I know what Zachary is feeling when he thinks he’s being left out or unheard.

I feel it is important that you appreciate each child, stay neutral when siblings disagree, and encourage children to love each other. As a parent, being involved with each of your children individually has a range of benefits. It allows us to pinpoint the needs of each child and deliver them. It also makes each child feel special and loved equally. I have found that having regular time with each child will help you grow closer to each of your children.

Check out HFA’s “Coping with Sibling Issues Toolkit” for more resources to help you and siblings address concerns about growing up with a bleeding disorders in your family.


Lindsay lives in New York with her husband, Alan, and her sons, Zachary, (9) and Myles (5).

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

 

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