The strength of motherhood

I hope everyone had a Merry Christmas.

I had a quiet Christmas day while Lily was with her dad.  It’s been a roller coaster of a few weeks – so many highs and way too many lows – so I’ve been looking forward to some much needed down time.

We’ve not yet received Lily’s EEG results but in the meantime, I asked her neurologist to prescribe her some anti-seizure medication while we are awaiting the results.  I couldn’t bear to not try something (and of course I’ve done countless hours of research on the topic so it’s not a knee-jerk reaction).  Lily had become a shell of herself.  And dammit if I’m not going to try every approach I can to help her get back to where she was 3 weeks ago.

Before Lily had her setback, my friend Carlos sent this note my way and it perfectly explains the joy, and pain, of motherhood.  And it’s even more relevant to me now than ever.

The strength of motherhood

Motherhood takes you to heaven and hell every day. It erases your past and amplifies it at the same time. It destroys and rebuilds you, slowly and carefully: replacing the cracked, broken bricks with stronger ones with no anesthesia.

Motherhood kills the old you; it doesn’t care who you think you are, only who you must be in this moment to meet the needs of the ones you invited into this world.

And somehow, by feeding that child, loving that child, wiping that child’s tears from their damp cheeks, pouring water over that child’s head as you sit beside them, uncomfortable and damp next to the bathtub, you become the gentlest of warriors.

Motherhood is a bridge that you walk alone, but as you look to your left and to your right, you see others on their own bridges, navigating the rickety planks of swaying wood. And as you see them struggling just like you are not to fall, it gives you the courage to take one more step.

Motherhood is painfully lonely, but at 3 o’clockin the afternoon whether you’re sitting on the living room floor with a child who doesn’t know your real name or at 3 o’clock in the morning with a child who needs your steady tapping on their pajama-ed back, you’re not alone because all over the world, mothers are doing the same thing. Their minds wander through the garden of their imaginations and memories, dreaming of sleep and rest, but powered by the fiercest of love.

The love that one pours into their child doesn’t come from the heart. Anyone can be in love. Anyone can be infatuated. The type of love one has for their child comes from the center of their bones. It’s the type of love that doesn’t need reciprocation to burn hot. It’s the type of love that never keeps score. It’s the type of love that powers nature in her infinite beauty and ruthlessness.

When a mother says, “I love you,” she doesn’t mean “I love how you make me feel” she means “You are my world, my sun and my moon and not life or death can change that, wherever you are I will find you whether it be across seas or lost within yourself. You are my breath and the light inside my eyes.”

Motherhood, while almost never glamorous, is always beautiful.

Written by:  Bunmi Laditan

Lessons Learned in Life

Motherhood has been the greatest gift I have ever received.  And I’m so grateful for my sweet kid.  She’s going to get through this and come out even stronger.  I just know it.

Wishing you all a peaceful and healthy new year.  See you in 2017!

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Opening Lily’s Christmas presents a few days earlier

My Christmas Wish

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.

love,

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.

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

 

To supplement or not to supplement

Recently on one of the parent groups, a question was asked about whether or not it’s worth buying expensive supplements for your kiddo. I thought my response could be helpful to other parents on a similar journey so I’m sharing here:

I’ve been using Agape on and off for years. When I can’t find it or afford it, I use the stuff you get at wholefoods ‘child life’ I think is the brand. I also have used and am using a mix of other supplements for my kiddo on top of this. And have I seen results? How can you really know? And what results are you looking for?

My daughter isn’t ASD (autism spectrum disorder), she has a disorder that, among other things, can cause growth issues (i.e. head and feet and other body parts stop growing) and failure to thrive because of malabsorption in the gut. She also has sensory issues and struggles concentrating. She physically cannot sit still due her her disorder.

So what have I seen? Well one thing is that she is on the growth charts. And continues to grow (though her weight is very much on the low end of the charts, but so is mine). I also see that she is healthy. And is getting better at paying attention. But is it just because she’s maturing? Is it because she got lucky and doesn’t have the growth issues that the other girls with Rett Syndrome have?

I don’t know. But I’m going to keep supplementing her and ensuring she eats the cleanest and healthiest foods possible (she’s on modified GAPS) because it can’t do anything but help.

If you’re not comfortable paying for Agape, why don’t you try the child life supplement to see if it’s something your kid will even tolerate before investing in a big, expensive bottle.

This SN parenting journey is not an easy one. And I’ve realized that we can’t do everything all the time. So pick and choose the things you believe in and think can help your sweetie be the best kiddo s/he can be.

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Long and lean, happy and healthy!

Feeling loved

I know it’s been a while dear reader. But Lily and I have been busy ladies! Starting a new school, finding a new home have been huge endeavors.

This past weekend we moved our lives from Brooklyn back to Manhattan. We will miss Brooklyn terribly. But our lives will be so much easier. We are now eight short blocks away from Lily’s new school and 30 blocks away from the office. No longer do we have hour long (or longer) commutes. We also don’t have a third bedroom, but there’s always a compromise!

No less than 12 people physically, and at least half a dozen virtually helped us girls move our home this past weekend. And many brought, or sent flowers to make our pretty new home even prettier. Thank you is an understatement!!

We are the luckiest, most loved girls in Manhattan.

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Scenes from a move