Tuesday, January 24, 2012

My Friends Daughter and Vada

I have a close friend who has a daughter just a little over a year old. I am constantly excited about the things that her daughter is doing. And I am dumbfounded that I have forgotten that this is what typical babies her age should be doing.

 I am not sad at the fact that Vada is not doing some of the things that my friends daughter is (even though there is an almost one year difference in age between the two) but there are moments when I really see the difference in stages and reality kind of pokes at me. There are times when I realize that Vada is actually behind in learning certain things and while I wish that she wasn't I am okay with that being part of how she learns. Everyday Vada learns and grows more and more-- I see it and I am amazed in her. She makes me proud and my heart is constantly smiling at the things that she does and says. It can be hard knowing that your child isn't learning as quickly as other children but when I watch Vada I know that she is picking up on more than she is putting out and the fact that each day she grows more and more shows me that she is trying and working hard.

I am proud of my friends daughter. She is where she should be developmentally-- if not advanced in certain areas. Its fun watching her grow and learn. I love her like she was a part of my family because in many ways, she is. I am even more proud of Vada because, well, shes mine and because I know that while things don't come as naturally to her working hard and never giving up does.

I am a proud mother of three amazing, unique daughters. And while I realize many wont "get" this next statement, those who have a child with Down syndrome will... I am also proud of Down syndrome and the impact that it has made in my life as well as my family members lives.

Monday, January 23, 2012

Being An Individual

I try really hard to pick my battles with my children. I have learned a lot from my oldest on where I personally have made mistakes so with my middle daughter Kiliegh I do a little better.

I have a hard time with this one though.

Kiliegh has her own "sense of style". And that's okay, but sometimes! -- wowza! I don't know what she is thinking! She wears multiple socks at a time. Sweats with blouses. Halloween pants (that I don't know how they got in her drawer in the first place) with sweaters. Her sisters fake fur coat that is ten times her size verses the really cute pink one (that actually fits). Sometimes I kind of freak out inside. But I hold my breath, count to ten and let her wear what she picks out. Sometimes, I mention that such and such don't really go well together but then she says That's okay, Mom, I like it like that." And I think that she really truly does. 

I think Kiliegh is artistic. Actually, I know that she is. She does amazing things. One time when she was younger she took a huge tote of crayons, dumped them out and made a circle with them connecting only the ends together. It kind of looked like a sun burst. The kicker was that she did it like a rainbow-- all of the reds were together, pinks together and so on. It was beautiful. Recently she drew a dog that looked like it should be on the Clifford cartoon and she did it by looking at another picture, not by tracing. She will sit and color or draw for hours, if she is able to do so. So when I see her in the outfits I feel like it is her way of expressing herself. 

Today she chose the below outfit. 

 (Note, she is actually wearing two coats-- the over sized black one and then a brown fluffy one underneath and the lighting is bad-- she has on black boots, brown sweat pants, a black coat, a brown jacket and a white long sleeve tshirt with silver glitter on it.)

I had already told her to not wear the sweat pants with a blouse and the added cardigan sweater she had laying out. And then when she came out, fully dressed, I asked her about wearing tennis shoes verses the boots. Then I asked why she chose to wear that particular coat verses the pink one AND THEN I asked why two coats instead of one! I didn't nag. Just asked the questions as casually as I could and let her answers be the end of it (insert a big sigh and roll of the eyes here). Even though I let her answers be enough, inside I was thinking that her teacher probably thinks she has nothing to wear at our house or that no one pays attention to her because I let her dress this way and for a moment I was kind of embarrassed inside because that is just not the truth. And then sometimes, I wish that I could be as carefree and bold as she is. 

Kiliegh told me that her step mom wont let her wear this black coat because it is too big and that she doesn't like Kiliegh wearing things that are too big and believe me I feel the same way and her step mom is a nice lady and I actually like her (so I am not making any jabs). But then... I think what does it matter? Kiliegh has nice clothes here, she has nice shoes as well-- Practically everything fits her (except for that stinking black coat) and everything would match if she cared to have them that way and truthfully, I don't care to have a cookie cutter kid and I do enjoy her individuality... So, while I may be slightly embarrassed I am more proud that she likes who she is and I keep telling myself that by letting her express herself this way maybe I a nurturing her calling for when she is an adult...? Who knows!

What about you, readers..., do you let your children pick out their own clothes? Do you choose for them? My oldest daughter Jasmine, asks me for my opinion a lot and I do help her- when she asks, but ultimately I tell her that she has to like what she is wearing. However, I would never let them wear inappropriate (sexy-like) clothes. That's where I draw the line. But, I am curious as to how other parents would handle this particular situation, if it were their child.

Thursday, January 19, 2012

Woodbine House Photo Call

Do you have great photo's of your child who happens to have Down syndrome? Are they in

 the age group of 0-6 years? Then send them to Woodbine House. They are looking for 

photos for their new edition of Early Communication Skills. Attach no more than four photo's 

and send them to online@woodbinehouse.com. The deadline is February 15, 2012, so if


COMPLIMENTARY COPY OF THEIR NEWEST EDITION!! The new edition will be available in May! 

This is so exciting and I am hoping to see many familiar faces!!!

Original Book
Book to be expected in May

Monday, January 16, 2012

Update on Amelia


I'm unable to copy a directly attach the most recent up date on 'Team Amelia', but the above is the link, please check it out. It seems as if our voices might have made some difference. It looks as if Amelia and her family have been invited back to Children's Hospital of Philadelphia (aka CHOP) to discuss the surgery. It's amazing what people can do when they fight for something. I pray that Amelia gets the medical attention that she not only needs but deserves. My only fear now is that CHOP will actually do the procedure. Hear me out... I want Amelia to have the BEST medical attention available, but CHOP has openly expressed that to them, her life is not worth saving. As a parent, I wouldn't want anyone to touch my children let alone preform an operation on them if I knew that was how they felt. I would think that they wouldn't try hard enough, wouldn't pay close enough attention to details... I would worry. Although I realm ze this may be Amelia's only chance so I am praying that either another hospital steps up and offers to do the procedure or that the Pearson doing it at CHOP is a true Christian who believes that all life is precious.

Saturday, January 14, 2012

Friday, January 13, 2012

Amelia Needs You: Brick Walls

What you are about to read is not my words. I copied and pasted it directly from Wolfhirschhorn.org
This story is shocking but I can promise you that it is true in every way. I need you to read this, AMELIA NEEDS YOU to read this and so does her family. Im begging you to read this and then Im begging of you to go to this link and sign the petition to FIGHT FOR AMELIA.

I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia.
We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.
After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.
The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.
He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.
“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?
The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.
Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”
I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.
The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”
I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”
She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”
In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”
The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”
I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”
“And then who do I see?”
“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
They both get up and leave the room.
I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage.
I hope you are disturbed, troubled, distressed, and pissed off when you read this. I hope you share it with many, many people. Although I did not know this yesterday, this is very common and happens across the map. I have researched and researched and researched transplants and the MR, as they are called in the medical journals, and it is appalling. We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.

Sunday, January 8, 2012

On the Night You Were Born

Yesterday Vada and I went to Barns and Noble, actually, we went to the mall and then because it's located inside of the mall (and also because of our love of books) we had to stop in. We read all kinds of books and Vada did some exploring of the children's section, while capturing the attention (and hearts, I'm sure) of many. We left the store with one new book, On the Night You Were Born, by Nancy Tillman. Have you read it? We have a lot of books like this one, books that give me the goosebumps when I read them to my girls, because they come close to putting into words just how much I love them. This one however, is one of my all time favorites, now. Let me tell you why...


Last night was a long night for me, Vada too. We didn't get a whole lot of sleep because Vada kept waking up. She doesn't have a fever and she has no signs that she is sick but over the last week and a half she has cut two of her two year molars and she now has two of her front bottom teeth cutting through. I think that has a lot to do with my lack of sleep and her restlessness. Anyway, I woke up this morning and Vada and I headed over to a friend of ours dry cleaning business. On the weekends Justin usually goes over and cleans for them but today he had to work and last night we went to the movies and didn't get home until late, so I did it for him. By the time I finished I had about an hour left until our second service at Church started. I still needed to clean up and change so Vada and I went home. By the time we got here I just wanted to get into my "comfy clothes" and take a nap. I was seriously contemplating doing so when I caught Vada playing with the book that we had bought the day before. I sat down and watched her while she turned the pages and babbled out loud, as if she were actually reading to me. I took a couple of pictures because I thought it was so cute and after a couple of minutes Vada closed the book and handed the book to me.

Everyday at Vada's nap times and then at her bed time we have been reading different versions of Children's Bibles. As I was holding onto the book that she handed me I thought of those stories and I knew that I needed to get off of my butt, get dressed and go to church and I did.


One of our Elders gave the sermon today. He started out by reciting a poem that sounded very familiar to me. I listened to be sure and then once he had finished I leaned forward to my friend sitting in the pew ahead of me and said "How crazy is it that I just bought that book?" This was the poem from the book that I had just bought, the one that reminded me of my love for my children. It was the same book that reminded me of Jesus' love for all of His children and it for whatever reason it had made its way to our church sermon. It felt as if Jesus himself were thanking me for coming today and I knew that I was right where I was suppose to be.

I never did take a nap today. Instead I came home and played with Vada and then cleaned while she was napping. All day I had a warmth in my heart and a smile on my face. And now this book holds a special meaning to me that no amount of words could express...

Some people believe that things are coincidental but that's just not me. I believe that God "speaks" to us in different ways and that if we slow down and pay attention we might just "hear" what He is trying to tell us. Its funny how His messages reach us and that today his came to from a children's book.


On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
"Life will never be the same."

Because there had never been anyone like you...
ever in the world.

So enchanted with you were the wind and the rain 
that they whispered the sound of your wonderful name.

The sound of your name is a magical one.
Let's say it out loud before we go on.

It sailed through the farmland
high on the breeze...

Over the ocean...

And through the trees...

Until everyone heard it
and everyone knew
of the one and only ever you.

Not once had there been such eyes,
such a nose,
such silly, wiggly, wonderful toes.

In fact I think I'll count to three
so you can wiggle you toes for me.

When the polar bears heard, 
they danced until dawn.

From faraway places,
the geese flew home. 

The moon stayed up until
morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are
and wonder who loves you, how much and how far,
listen for the geese honking high in the sky.
(They're singing a song to remember you by.)

Or notice the bears asleep in the zoo.
(It's because they've been dancing all night for you!)

Or drift off to sleep to the sound of the wind.
(Listen closely... it's whispering your name again!)

If the moon stays up until morning one day,
or a ladybug lands and decides to stay,
or a little bird sits at your window awhile,
it's because they're hoping to see you smile...

For never before in a story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again...


Heaven blew every trumpet 
and played every horn
on the wonderful, marvelous 
night you were born.

On the Night You Were Born
By: Nancy Tillman

Saturday, January 7, 2012

Vada Smiles

I used to get kind of jealous when I saw other babies smile because I was still waiting for my own baby to share that full faced expression with me.

I would become worried when I saw younger babies who had Down syndrome smile in ways that Vada had not yet come close to doing herself. I would wonder what damage was caused from her seizures. Was she happy? Am I doing something wrong? Would she ever smile like those other babies? Would her lips ever stretch from ear to ear or would her eyes ever light up with excitement? The answer is both yes and no. No, she would never smile like those other children because she would find her own smile. And yes, her eyes would glow a very powerful glow.

A smile is a precious gift. It has a power that can illuminate a room or melt a heart and when it comes from your own child it can renew your strength and nourish your soul, that's what Vada's smiles do for me.

It took a long time for Vada to share a face stretching smile with us but she now does it every day, even when you would least expect her to.

And each smile that she shares is magical!

Is she always happy? No, that's a common misconception that's associated with Down syndrome, but over all she is one of the happiest babies around!

And through her, we have learned to smile and laugh more. We have learned to cherish each and every gift that we are given through not just her but from all of our children. 

Sometimes I take things that seem little, like smiles, for granted. I forget how long I waited and how my heart once ached in anticipation to see them, but its on days like these, when Vada has non stop giggles straight from her sweet little belly, that brings it all back and waiting has been well worth it!

Friday, January 6, 2012

With Her Hand on Her Hip

Something great happened today...

It's happened before...

But never like this...

And never for this long...

With her hand on her hip...

Vada stood.

She stood tall.

And strong.

For almost a minute Vada stood on her own.

And then gracefully she sat back down.

Good job baby girl, good job!

Target's Newest Model

A couple of months ago Target did an add in one of their flyers. Their model, a beautiful little girl who happen to have Down syndrome. When I saw the add I was giddy! I thought finally, our children were being shown for what they were, beautiful children who play, laugh, learn and have friends like every other child.

Now again, Target uses yet another child who happens to have Down syndrome as one of their models. A Cute little boy named Ryan.

Ryan also modeled for Nordstrom's this past summer. 

The thing that I like best is Target didn't advertise that they had used a model who happen to have Down syndrome. They added a child that society and medical professionals often say we should throw out. They added a child who happen to have Down syndrome and to them he was just another child and part of their team. Noah'sdad.com described it best in his latest blog entry called Target is 'Down' With Down Syndrome: 5 Things Target Said By Saying Nothing At All.

Ryan's modeling story also made it to the MSNBC's The Look on the Today Show's website, you can go check that out here.

Tuesday, January 3, 2012

Seizure Update

A few days ago V and I took another trip to the St. Louis Children's Hospital/Washington University to meet with her neurologists/epitologist. It had been around six months since our last seizure scare and visit to the doc's but this trip wasn't due to any scare, luckily, this visit was just a check up. In fact,  I had no concerns what so ever. It was nice!

There's not much to say really, which is a great thing to finally be able to say! Vada's last known and proven seizure was around the time she started the ACTH injections, which was around a year and a half ago. Since that time there have been many questionable moments, movements, and behaviors but thus far we(I) have been wrong and her seizures have been controlled. Again, another great thing to be able to say!

What this all means is that this coming August/September of 2012, will be her Vada's two year anniversary of being seizure free! A monumental moment to celebrate! It also means tapering time, something else to celebrate but also something that has a dropped another heavy anchor into the very pit of my stomach-- even my heart is bogged down with overwhelming concerns. I keep telling myself that this too is progress and progress, no matter how difficult to endure, is good.

Currently, Vada is on three medications to help keep her seizures under control. She is on Levetiracetam (Keppra), Valporic Acid and L-Carnitine (to offset ill side effects caused by the Valporic Acid. The first step is to taper or wean her off of the Keppa and both of her doctors agree that it is time. However, they both said that if i'm not ready then we can wait. I used the inallagy of a child not wanting to have a bandage removed because they know that it may hurt, therefore, usually, its done quickly.  I then told Vada's doctors that I will never be fully ready to take this chance (I am just fine being in this comfort zone--thank you very much!), so like the bandage situation we just have to do it. Quickly, however, is not how her weaning will be done. I have been given a schedule that will slowly, over ten weeks, take her off of the Keppra.

After those ten weeks Vada will remain on the other two medications until we return for another check up in or around July 2012. If everything goes well, we will then begin to wean the remaining anti-seizure medications and by Aug./Sept. (her two year anniversary of being seizure free), she could be completely off of all seizure associated medications!

I have to keep telling myself, "one day at a time" and "slow and steady" but things are going beyond well. I pray that they continue to be so. Our lives have settled down considerably and things feel "normal". Its been nice. I don't want to go back to where we've been, I want us to keep moving forward but I guess even if we do have setbacks, that's exactly what we will do anyway..., move forward.

Sunday, January 1, 2012

2012 GiGi's Playhouse I HAVE A VOICE Gala

We just purchased our tickets!!! Who else is coming?

A Productive NewYear

I recently met with all of Vada's therapist for her sixth month review and we made different goals for Vada to work on and meet over the next six months. It got me thinking about New years and all of the broken resolutions that I have made for myself over the years. Personally, I kind of think the whole resolution thing is a bit over rated. However, making personal goals to better yourself is not, especially if you actually follow through! Over the next six month I know Vada will meet the goals that were made for her. I know it. I have no doubts. So why shouldn't I expect something more out of myself?

So here's my "resolutions", for my children, for my husband and for myself.
  • Smile more-- those wrinkles are worth it!
  • Exercise more-- Ill feel a ton better and set a healthy example for my family
  • Snack less
  • Stop giving dead end answers, so that I can carry on better conversations with others-- my social skills are lacking, to say the least. 
  • Step out of my comfort zone
  • Cook healthier meals and less pre-made, "just add" and or boxed meals
  • Do a load of laundry everyday verses doing laundry all day for two days in a row
  • Sit up straight-- I have terrible posture
  • Do my daily devotions
  • Limit my daily computer time
  • Continue to pray with the girls each night
  • Complain less and praise more
  • Bite my tongue and choose my battles 
  • Let my older daughters "duke it out" more often, verses always stepping in. They tend to figure things out and get along better when I don't get involved-- but its really hard not to.
  • Make a scheduled monthly "date night" for Justin and I and then pay for a sitter on those nights so that it actually happens!
  • Be better managed with my time/schedule (meals, shopping, groceries, cleaning, weekly schedules...)
  • Do more crafting, by myself and with the girls
  • Take my daily vitamin every day (with food!)
  • Save money to go to Texas to see my parents, to go to Florida to see Winter the Dolphin and to go to the 2012 Down syndrome Conference-something that I have attempted to to for the last two years!
  • Be grateful for today because soon it will be over and tomorrow we will all be older
  • Learn more sign language
  • Add to my vocabulary!
This last year has been full of trials but I can honestly say that it has also been the best year of my life! I am excited for what 2012 will bring but I cant help but wonder how it could possibly get any better than it already is!

Happy New Year family and friends. May God bless your lives richly!