top of page

Creativity and Love in Caregiving:

Updated: Nov 14, 2023

Navigating Primary Lymphedema as a Mom.

It's been a while since I last shared our journey with you, and I must admit that a lot has unfolded in our world of primary lymphedema since then. While I could spend time recapping the entire year, today, I'd like to jump right into the most recent chapter of our

journey, which has been filled with growth, challenges, and inspiring moments.

hands making a heart, showing love and support

Being a mom is a journey filled with love and nurturing, but when your child is diagnosed with primary lymphedema, that journey takes a unique turn. This disease presents us with challenges that require us to be creative problem-solvers, especially when it comes to finding the right clothing, shoes, garments, bandages, taping, and support for our little ones. In this blog post, we'll dive into the world of caregiving for children with primary lymphedema from a mom's perspective, highlighting the power of creativity and unwavering love.

Understanding Primary Lymphedema:

Primary lymphedema is a rare and chronic condition where our child's lymphatic system doesn't develop correctly, causing swelling and discomfort in their limbs. It's not just a physical struggle; it affects our child emotionally and mentally as well.

The Challenges I Face as a mom:

-Scarcity of Resources: One of the most frustrating challenges we face as moms is the lack of specialized clothing and support for our children with primary lymphedema. It often feels like we're on our own in finding solutions.

-Emotional Struggles: It's heartbreaking to see our little ones deal with this disease. We, too, go through a rollercoaster of emotions- from helplessness to determination. The physical demand of this disease contributes to the emotional struggles, for both child and caregivers. Unless you are living it day in and day out, there is no way one can truly understand.

-The Magic of Creativity: As moms. we quickly become experts in finding creative solutions to help our children lead better lives.

Being Creative in Caregiving:

DIY & Problem Solving:

For instance, when the compression garments seem to be failing its job for any given week, instead of "waiting it out", we dig in our "toolbox" and find items that could help give added compression to the problem areas our child is having. Ex: Velcro compression, bandaging, or even kinesio taping. Just to name a few.

Cutting pants to alter the style, fit, shape.

Another creative aspect I would like to share but have not executed yet: jeans. My child is not able to wear blue jeans and moving up sizes is not an option because her waist is too small. For a year now she has worn skirts, leggings, dresses and shorts. The other night I was thinking back to my younger years when my grandmother took a pair of my jeans and made bell bottoms for me. She slit the inside and outside seams from the knee down and added fabric of my choosing. Voila, custom bell bottoms. Take that same concept with someone with lymphedema. Instead, you would do the entire leg with added fabric to allow room for the swollen limb. In theory, it sounds like it could work. Sadly, I am not a seamstress. However, I am speaking with someone who is. I am hopeful for the outcome, and I WILL blog about the outcome, successful or not.

Raising Awareness: Take the initiative to educate yourself and others about primary lymphedema. Let your community know about this disease, which might lead to more resources becoming available. I will dive further into my approach of advocacy and awareness in a later post. All I will say is, Jo Rising Foundation is something I am very proud and passionate about. :)

Finding Emotional Support: Join support groups and organizations that offer assistance to families like ours. Sharing experiences and advice can provide the emotional support we need.

Encouraging Independence: Teach your child to embrace their uniqueness and build self-confidence. They need to know how to care for themselves and advocate for their needs.

Being a mom to a child with primary lymphedema is an emotional journey, but it's also a beautiful story of love, creativity, and resilience. By sharing our experiences and advocating for more resources, we can make a real difference in our child's life and in the lives of other families facing similar challenges. The road may be tough, but with our love and dedication, we can help our little one's bloom.

With Love and Strength,


Be sure to subscribe to our newsletter to stay updated with Jo Rising Foundation.

1 Comment

Rated 0 out of 5 stars.
No ratings yet

Add a rating
Apr 17
Rated 5 out of 5 stars.

A mothers love has no end.

bottom of page