Tag Archives: Rett Syndrome

The strength of motherhood

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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

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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

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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

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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!

The best summer ever!

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Maybe it was because Lily slept so well every night, maybe it was because we spent a lot of time at the beach and the pool, and maybe the two are related.  Who knows?  All I know is that this kid (and this momma) had FUN.

We kicked it off with a trip to the north fork in Long Island to visit Lily’s Rett sister Maren and her twin Ben (and their mom Lena!).  We hung out on the beach, watched the sailboat races and witnessed Lily’s advanced flirting skills.  She took quite a liking to Ben and they took turns chasing each other up and down the beach.  It was as adorable as it sounds.

Next up was a family reunion in Boston Corners with Auntie Angela and co. It was a great trip – the weather was nice and cool and the company was fantastic.  Lily loved spending time with her family and going for nature walks.   We even went for a bike ride (she barely fit into the kiddie seat in the back)!

A few weeks later, Teetee Angela and her big belly came up to visit us! We went swimming, read books at the library and ate at some super cool restaurants.

We then had a flyby visit from our cousins Laurene and Steve who live in Indiana and that was super fun for the mommy.

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Lily then went off and spent a week with her dad up in Connecticut.  She LOVES the water (and dressing up like a fairy).  I’m pretty sure she thinks she’s a mix between a mermaid and a fairy.  You should see this kid in the water!

 

A few weeks later we were both up in Connecticut as Lily was a flower girl at her Aunt Kathleen’s wedding.  This kid looked so pretty and she loved wearing her flower girl dress.  She and I had a lot of fun playing around at the farm where the wedding pictures were being taken.

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Next up was another visit to the north fork where not only did we catch up with her Rett sister Maren, but her other Rett sister Ella (in purple below right – it was impossible to get these two girls together for a photo!).  This day (for both Lily and mommy) was probably one of the very best days we had all summer.  Lily was reunited with Ben and mommy got to spend time with adults who are also raising girls with Rett Syndrome (and happen to be absolutely awesome people).

And I’m not even done yet… so many more amazing things happened this summer.  Uncle Viraj came in for a quick visit, Lily spent another week with her dad at a water park, she and I spent a few days with our friends Bonnie, Stefanie and their beautiful family on Shelter Island and then we caught a plane to Florida to spend time with our family down there.  Lily sure loves her Grandma and cousins.

Holy cow, no wonder I’m so exhausted.  We were busy girls this summer and we were both so very loved everywhere we went.   I’m feeling really grateful that we were able to make such beautiful memories with the most amazing people.

Love to you all.

C and L