I am not going to sugarcoat what’s been going on. Lily is having an extremely difficult time doing things she used to do effortlessly like sitting up on her elbows, standing, walking, breathing.
I’ve been busy trying to procure additional help at home – whether it’s friends or family stopping by in the evenings or hiring a morning aide to come and help us get out the door. We just got approved through Medicaid for a home health aid to be with us 24/7 but there are still numerous steps to actually get that support into place. It still may be a matter of months until this service kicks in.
We are navigating through a new, terrifying TEMPORARY time. Through it all, this kid amazes me with her determination, grace and beauty. She is my hero.
It’s a cure for Rett Syndrome. Seriously, it cannot come soon enough.
I went on Facebook earlier and saw that created a slideshow of my recent photos. It made my heart break to see them as it shows just how much my little girl has been struggling these past few weeks – things we all take for granted like breathing, eating, walking. If you’re considering any end of year giving, Lily, her Rett family and I would be eternally grateful if you gave to reverserett.org. We are also accepting prayers and positive vibes.
C & L
PS we are anxiously awaiting eeg results. PPS if you ever find yourself needing to take your kid in for an extended eeg (which is a frequent occurrence for girls with Rett), I highly recommend you try to get it done in-home. PPSS if you ever have a week like Lily and I had, I also recommend that you get as much support as possible. We were lucky to have the fabulous, multi-talented uncle Carlos in town visiting us from Geneva.
As most Americans are reeling about the outcome of the presidential elections, the special needs community is taking it particularly hard. I’ve not been able to put words to my thoughts and fears about Trump being elected. Thankfully a fellow Rett momma warrior, Lauren Cooper Allen, did just that on Facebook’s Pantsuit Nation site and I just had to share. You can click here to see the original post if you have a Facebook account and read all the amazing and beautiful responses. I recommend that you read the responses. It filled me with hope.
This is my 13 year old daughter Molly. She has Rett Syndrome (RS), a neurological disorder that effects 1 in 10,000 GIRLS and WOMEN worldwide.
Molly cannot walk or talk and often has uncontrolled hand movements much like the ones Donald Trump made fun of and mocked in reporter Serge Kovaleski.
I have watched, often silently, as my daughter is stared at. I have watched as people have pointed and spoken in hushed whispers “what is wrong with her?”.
I have spent tireless hours educating others on disability and acceptance, and my fears now have become a hard reality.
Not only does my family face catastrophic cuts to the social service programs that allow
us to care for her at home but I fear that the walls to tolerance and acceptance which we have worked so hard to chip away at are being slowly built back up.
How long before children think it is OK to mock, ignore and marginalize her? How long before she realizes that she is not a valued member of our society?
Here is my plea. If you see a disabled child, please, speak to them, smile at them, let their parents know that you are committed to taking care of the most vulnerable members of our society.
Photo credit: Elise Hanna
#togetherstronger #lovetrumpshate #buildlovenotwalls