Some good news

The week started out tough.  Lily got a ‘failure to thrive’ diagnosis on Monday from the nephrologist.  This is like getting (as one wise Rett momma so eloquently put it) a punch in the gut.  Hearing those words, especially as a mom, well… the guilt and disappointment and anger is indescribable.  I walked away from that appointment trying to not feel like a total failure as a mother. Thankfully my kid was being extra sweet and silly which helped shake me out of my funk.

The next day I got a video from school showing Lily holding onto the handlebars for close to 40 seconds while riding a bike.  This is HUGE.  Her hand function has slowly been improving over the past few weeks.  I can’t post videos to this site so you’ll have to settle for a screenshot instead.  If you’re on Facebook, I’ll be posting the full video shortly.

And then this morning, we had to see her pediatrician to get his signature for a Medicaid form.  They do not make it easy to get, nor maintain Medicaid but holy cow am I glad that Trumpcare failed because I’m not sure what we’d do without it.  But I digress….  We did a weigh-in at the same scale we used 5 weeks ago and according to the scale, she gained 2 pounds.  It’s taken a lot of effort – and patience – for both Lily and her nannies, therapists, teachers, parents, etc. to get here.   And we’re not done yet.  She’s still 3 pounds away from where she was 6 months ago but she’s starting to gain it back.

How did she gain 2 pounds in 5 weeks?  Well, Lily’s been on a steady diet of home-made mac-n-cheese, duck, tater tots, cupcakes, avocados, yogurt, pudding and pizza.  I’m still slipping in super healthy stuff for her morning smoothies to ensure she’s getting the vitamins and minerals her body needs.  But she’s basically eating anything and everything she wants.

In two weeks we are seeing the GI doctor to discuss further this ‘failure to thrive’ issue but I’m hopeful that the conversation will be a mostly positive one.

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Holding on to the handlebars like a pro!

A (hopefully) brave new world

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.

15085596_10211510858434011_5619371133999671014_nI 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