Words From a Mother’s Heart
Happy Mother’s Day!
Our Glut1 Gathering on Mother’s Day weekend was full of warmth and wisdom as we talked about things we wish we’d known on diagnosis day and advice we might have for others on this journey with us. We wanted to share some of these words from heart:
“You’re not alone. Even when it feels like it day to day—you’re not.“
“Life can still be really good. It might be different than you thought it was going to be, but it’s still really good.“
“Give yourself grace. Take it one step at a time.”
“This can be a really lonely journey. If someone else has figured something out already, why wouldn’t you try to help someone else?“
“The diagnosis doesn’t take away their smile.“
“Reach out to those who have been traveling the road a little longer.“
“Build yourself a crew. Your own support system of people who understand.“
“You know your child best. You are their best advocate, and don’t be afraid to be that advocate.“
“Every doctor has different viewponts and specialities. Make sure you hear more than one voice.“
“Find doctors who are willing to be part of the team. Sometimes that isn’t the expert, but one who is willing to learn along with you.“
“Ask other moms for ideas about what kinds of questions you should be asking in the doctor visit, what you should be talking about.“
“The doctors tend to focus on the seizures, but there is much more we need to be thinking about.“
“It is hard to juggle all the therapies. Try to keep a good balance – enough but not so much it takes over your lives.“
“Get a quality, independent evaluation of your child from someone who knows them and can really understand what they can do and where they might struggle.“
“Sometimes they aren’t given the chance to show what they can do. Give them those chances.“
“Be careful with ‘What if’… if there is something you can do now, do it, but don’t dwell on the past.”
“Get a multitude of opinions – for school issues and for their medical care.“
“They are still the same person they were always going to be.“
“There are always going to be turns in the road where you don’t know which way to go. Reach out to someone who has been there.“
“This is a group you never wanted to be part of but find so much value in.“
Navigating the many unknowns of a rare disease isn’t easy, but so many of you show up every day with strength and love not only for your own loved one, but also with your eagerness to help others. Thank you for your tireless care, your endless compassion, and your boundless hope – we see you, we appreciate you, and we celebrate you!
