Life with Mimi: Rachel’s Reflections on Acceptance and Inclusion for a Daughter Who Lives Life in a Big Way
In Episode three you’ll hear from CDKL5 mama, Rachel, who is raising her amazing nine-year-old daughter, Mimi, with her family in California.There are so many quotables in this episode! Rachel is an insightful speaker and her stories about life with Mimi are captivating. Please listen to the episode to hear it first-hand. I’ll take a shot at highlighting some of the discussion here.
From early on, Rachel noticed that something was different about her new baby, Mimi. She was floppy, lethargic, didn't want to feed, and appeared jaundiced. At just three weeks old, odd movements led to a trip to the ER. Initially dismissed as overanxious parents, an EEG soon revealed that Mimi was experiencing seizures, leading to her being put on her first anti-seizure medication.
Like most of us, Rachel wasn’t educated about epilepsy and thought that the new medication would resolve Mimi’s issues. However, when Mimi had another seizure despite being on medication, Rachel quickly realized that managing her condition would be more complex. Within weeks, they were already trying new medications and making frequent trips to both the pediatrician and the neurologist.
By three months, Mimi was referred to early intervention due to delays in eye contact, smiling, and lifting her head, and at four months, she was diagnosed with CDKL5 Deficiency Disorder. The diagnosing doctor assured them that the diagnosis didn't change what they already knew about Mimi, but the news felt life-altering for Rachel.
I couldn’t imagine how it could be that this baby isn’t going to grow up as I imagined she would.
Post-diagnosis, Rachel sought answers and support. Online information was limited and discouraging, and she braced herself for a challenging future. However, Mimi's journey proved to be “totally different” than what her mother anticipated based on what she had read.
Rachel describes Mimi as “always on the go” and reflects that she was crawling at 15 months and pulling to stand shortly after. She took her first steps at age 2 and was fully walking by 2.5. While this might seem thrilling for someone with this diagnosis, it doesn’t come without significant challenges.
The thing that really doesn’t get discussed enough is there is this category of kiddos that are both physically, relatively able, but functionally extremely disabled, and the physical ability actually makes the functional disability so much harder…I was not prepared for the level of danger she poses to herself.
Safety is paramount when caring for Mimi and the hypervigilance is, understandably, wearing on her family, who try to balance keeping Mimi safe while also allowing her freedom to move. Locked doors and gates are the norm, but are not bullet-proof, as the family learned after a frightening incident where Mimi escaped home and ran across the road.
Rachel and her family have centered their physical household around Mimi’s needs, by necessity. It is a sacrifice for the family unit as very few spaces are off-limits to Mimi so as to create “as much of a ‘yes’ environment as possible” for her.
Mimi's determination to explore the world poses constant challenges, not only in terms of her safety, but her often loud, rough, and demanding behaviors. The unpredictability of her behaviors makes outings difficult and Mimi needs someone beside her at all times. It is all made more challenging because Mimi is not satisfied sitting in her stroller unless it is moving. Coming to a stop to wait in line or visit with friends feels impossible when Mimi is protesting by screaming and kicking.
To manage this, the family is often forced to split up - one parent will stay home with Mimi while the other takes her brother out for activities or social time. It’s a hard way for a family to live, and the sibling relationship can be strained. Mimi's brother loves her but struggles with her behaviors. It's a delicate balance between meeting both children's needs and maintaining family unity.
Unmet Needs and Gaps in Support
Despite receiving support from the state, finding skilled respite care remains a challenge. Rachel dreams of a world where inclusion means more than physical presence, envisioning skilled caregivers helping Mimi explore safely and engage with the world on her own terms. She notes that the world isn't set up to accommodate someone like Mimi, limiting her access to activities she could enjoy. More adaptive programs and trained therapists could significantly enhance her quality of life.
Mimi is Mimi. She’s my daughter. She’s lovely and she’s a sprite and she’s just spicy and fizzy and full of life. And she has CDKL5 too, but it doesn’t change that she’s my Mimi.
We hope you enjoy getting to know Rachel and Mimi in episode three of the CDKL5 in Color podcast. Any questions or comments, please message us! We’d love to hear from you.
Until next time 💚
Like this blog? Tell your friends!
Be sure to check out our podcast and follow us on social media!
@CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube
www.CDKL5inColor.com
--------------------------------------------
Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.
Comments
Post a Comment