Friday, August 31, 2012

Gabe's Heart

Last May in my Mother's Day Post, I introduced you to this beautiful boy, Gabe....



Gabe's mama Julia had submitted his photo for a montage I was working on, and included these words:


This is my sweet boy, Gabriel. He has Hypoplastic Left Heart Syndrome, an AV Canal Defect and Trisomy 21. He is in the hospital right now having a hard time recovering from his heart surgery that was on April 10th. I haven't seen him awake for the past month, missing him terribly. He is 8 months old :)


Gabe's daddy posted this video last week on Gabe's Facebook page, Hope for Gabe's Heart.
More than anything you've ever read or watched on Lily's blog, I hope you listen to the message of this video.




Gabe went to be with Jesus shortly after this video was filmed.

His heart is whole now. He is alive and smiling and fully healed, and he's waiting for his Mommy and Daddy...and although their hearts are aching for him, and they're missing him more than anything, they have something to put their trust in that is bringing them through the hardest thing any parent could go through.

How does a parent endure the loss of a child? This is how. Because if you have the hope of Heaven, you know you're going to see your child again some day.


Do you have this hope for your heart ? I pray with all my heart that you do.

"Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled: 'Death is swallowed up in victory. Oh death, where is your victory? Oh death, where is your sting?' 1 Corinthinans 15:54-55



You can go HERE to leave a comment and let Gabe's family know you are praying for them.




 "He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever." Revelation 21:4

Wednesday, August 29, 2012

connected

I'm a parent of ten amazing children. My oldest is 24, and most days I feel like I've experienced every range of emotions there is to experience as a parent.

But nothing prepared me for life with a child with special needs.




Why? Because I never knew what it felt like to wonder if my child would ever be able to communicate with me. It was always a given that my child would be able to tell me if they were sad, happy, if they got hurt, if they were tired, if they were hungry, if they had a sore throat, a bad dream, what made them laugh...I just knew that at some point language would kick in.

Because language connects. It lets us into our children's world. And those first months of Lily's life I was so worried that I couldn't get to that world. Someone had told me right after Lily was born that most people with Down syndrome don't talk. And that little piece of false information stuck with me. Even when I began to make connections with parents of children with Down syndrome and learned that speech does eventually come for most children, albeit later than "typical" children, that worry lodged itself in my brain, like a vicious weed that refused to be uprooted.




We're two and a half years into this journey called Down syndrome and the one thing I've learned? Lily will prove me wrong again and again. She will out-do my expectations and then some. No matter how high I set the bar, she sets it higher.

Sam and I were sitting in our sunroom last night, in the cool of the evening when a beautiful summer's night breeze was blowing through the screened windows. Lily was coming in and out of the room, doing what she does best- entertaining us. She sang songs, she danced, she played peek-a-boo, she tickled our toes, she brought her baby in and rocked her, she threw her baby on the floor and shook her finger at it and yelled at it, and then burst out laughing at our responses. She fully engaged us with her antics - she was the star, and she knew it. And the whole time she didn't utter one word. She babbled, she sang her constant refrain - lalalalalalala- with an occasional sign thrown in...daddy or baby or milk...but she was communicating with us, just as clearly as any of my two and a half year olds has done in the past.

We were connected.

I do believe speech is coming for Lily. It might be this year or it might be a few years from now, but my girl is showing me every day that she's thinking, she's problem-solving, she's engaged, she's connected to us. For the most part that comes through sign language- she has well over 100 words she uses to communicate. Every now and then she slips in a spoken word- "baba" for milk or "oooh" for cheerios. But for the most part she tells me what she wants through gestures and signs, and I'm learning that there is more to language than "speech".

Take for example this video. It is priceless to me. I watched it three times before I realized- she's telling me that her baby is sleeping. I was so caught up in listening to Lily's sweet little song, that I almost missed her word- sleep. (and for those readers not familiar with American Sign Language, the sign for "sleep" is the sweeping motion she is making across her face at the end of the video.)





"It is only with the heart that one can see rightly. What is essential is invisible to the eye." ~ Antoine de Saint-Exupéry, The Little Prince

Sunday, August 26, 2012

where your treasure is

A week and a half ago Sam handed me a package that had come in the mail for me. I saw the sender's address and I grinned, because I'd been waiting for something to arrive from my sweet friend, Michelle Z. She had texted me the week before and told me she was sending me "a little something", and I had been telling her ever since that "I just knew it was an orphan and I couldn't wait to see which one she sent me."

Of course we both knew I was teasing. But I had no idea she was sending me the next best thing.







And yes, I cried.


This drawing, now hanging on my refrigerator, is my most valuable possession. You know those questions on What If games, like, "What if there was a house fire, and you had to grab one thing. Aside from your kids, what would it be?"

I'd grab this picture.

Because although this picture was drawn by a little girl who lives on the other side of the world from me, and although I've never met her, she has had my heart for a very long time.

Olga drew this picture, and her mama auctioned it off in a fundraiser to bring her home (and I'm sure she has quite a few hanging on her 'fridge as well!) and my sweet and wonderful friend Michelle Z bought it and sent it to me. And I am so grateful.


You see, there's a person behind that picture. A beautiful, blond haired little girl with shining, soulful eyes, who has been waiting all her life for someone to call her their daughter. She's known life in an orphanage, and perhaps she's known some measure of attention, but has she known love? real love? I doubt it. She's never known what it means to be part of a loving family, or known what it means to be valued.


She's never drawn a picture and watched her mama proudly hang it on the refrigerator for everyone to see.


She's been waiting too long.



Where your treasure is, there will your heart be also. Matthew 6:21


Where is your treasure?

Is it in the things of the world, the trinkets that you could buy in a department store, or in a magazine? Is it in the house you own, the car you drive, is it in a bank account somewhere?


I know where mine is.


It's hanging on the refrigerator in my kitchen, a reminder of what really matters, a link to a little girl who desperately needs to come home.


My dear friend Charrissa is hosting a fabulous giveaway to help the Abell family bring Olga and Vanessa home. Among a wealth of wonderful prizes, they are giving away a Macbook Pro valued at $1200...



a $100 Amazon gift card




and an autographed copy of The Pioneer Woman Cooks...donated by Ree Drummond herself.




Will you go help ransom Olga and Vanessa? Will you invest in a treasure that is far more precious than silver or gold?


Go HERE to enter the Bringing Home Olga and Vanessa Giveaway. Leave a comment saying Lily sent you, and receive an extra entry.


Where is your treasure?

Saturday, August 25, 2012

goal met, a winner, and little miss stubborn

A HUGE thank you to all who donated to the Quinn family's adoption fund- they met their goal of raising $2,000 in one week...they will now receive the matching $1,000 grant donated by an anonymous giver!! Thank you from the Quinn family for helping spread the word about their adoption and fundraising efforts. You can continue to follow their journey HERE as they bring baby Kamdyn home.

The winner of the beautiful Mother's Nest necklace is...




Lisa I donated too :)


Please contact me with your email address so I can put you in touch with Elisabeth from No Greater Gift !


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In other news...






...our little spitfire is learning lots of new sounds and words these days. She just started speech therapy two weeks ago, and thanks to some helpful hints we are seeing new sounds emerge every day. One of her new words is "hi" and occasionally we hear her combine it with "dada"...but only when Lily wants to say it, as demonstrated by the video below ;)






Happy weekend!!

Friday, August 24, 2012

last day

It's the last day to enter our no greater gift giveaway and win one of these...


Over $1,000 has been raised for the Quinn family's adoption - thank you so much to all who have donated!!  Ashley has til midnight to raise the remaining $809 to receive the matching grant...an anonymous donor is pledging $1,000 if they can raise that amount. Please go HERE to donate two dollars or more to be entered to win one of the beautiful nest necklaces pictured above. Leave a comment here, or on our giveaway post stating that you donated. Winner will be drawn tomorrow.

HAPPY FRIDAY !!

Wednesday, August 22, 2012

the little mama












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p.s. Don't forget to enter our no greater gift giveaway~ $681 raised for the Quinn family's adoption this weelk! Make sure to leave a comment on the giveaway post to be entered to win.

Tuesday, August 21, 2012

Monday, August 20, 2012

no greater gift giveaway

Hi friends,


My friend Ashley has a special offer she wanted me to tell you about.


I'm SO excited that her family is overseas right now, meeting her baby sister for the first time!



Ashley is trying to surprise her family before they come home...




If every one of my followers gave $2.25 to the Quinn's adoption fund, Ashley will have met her goal.



Do you think we can do it??






I think we can !


Two dollars each is a small price to pay to rescue an orphan...I know we have that much in change lying around our house!


To sweeten things up, my friends over at No Greater Gift have offered to donate a beautiful necklace to one random commenter...




Aren't they beautiful??


All you have to do is donate TWO DOLLARS to the Quinns to be entered to win one of these necklaces (your choice.) Leave a comment on this post telling me you donated to the Quinn's adoption to be entered, and a winner will be drawn this Saturday.


Let's save an orphan together!



Love,

Lily oxoxox

p.s. If you just can't wait to see if you won the necklace and would like to order one, you can do so at No Greater Gift ...thank you, Elisabeth, and we can't wait to see who you are adopting as well!

Friday, August 17, 2012

what the doctors never told me

In all the stacks of information about medical issues Lily might face in the future regarding her diagnosis of Down syndrome, somehow those doctors left out a few very important facts. Was it for lack of long term studies or purely to shield me from what was to come?


I'll never know, but I am posting this as a warning to new parents of children with Down syndrome.


We have here significant scientific data that proves the 21st chromosome (of which individuals with Down syndrome have three copies) contains genetic material responsible for ....






A) mischief





and


B) charm



...thus tripling the potential for daily doses of trouble.


Consider yourselves warned.


Tuesday, August 14, 2012

waiting angels

She's everything to me. She lights up my days with her crinkly-eyed smile and her deep belly laugh. There's not a night that goes by that I don't tuck her into bed and kiss her soft forehead and thank God that He didn't answer my prayer...the one that asked Him for a baby without Down syndrome.

Because if He didn't give me her...



...then I might not know about her...


Date of Birth: September 2008
Gender: Female
Nature: Calm

Diagnosis: Down syndrome

Waiting for her mama, single moms and married couples welcome.   


$2316.50 is available towards the cost of my adoption.

Go HERE to learn more about Carmen.



And I might not know about her....



Born October 2006
Diagnosis: Down syndrome

Robyn is a darling girl of Roma heritage.  She is almost 6 now and has likely been transferred to an institution.    
$4802.61 is available towards the cost of my adoption.

Go HERE to learn more about Robyn.



And I might not know about her....




Birth Date: February 2007
 

Diagnosis: Down syndrome, heart defect – she needs surgery.

This little one has been waiting SO long. She has a significant heart defect and needs to see a cardiologist.  She is doing ok for now, but definitely needs a family quickly.


$8249.15 is available towards the cost of my adoption. 
 
Go HERE to learn more about Lilly.
 
 

These precious angels are waiting to find their forever families. Are you the answer to their prayers?

Sunday, August 12, 2012

The Call (and iPad winner)


The Call 

by Kelly Dirkes

Her faithful emails always start with an upbeat “hello Marusiya and Mama!”  I can almost hear the cheer in her voice.  All that’s missing is the warm, strong hug we’d be enveloped in if we were standing in the director’s office.


Her now familiar greeting was absent from her last email.

It simply started with an anguished, desperate plea.

Please help me find mamas and papas for them.

My heart sank.



I remember Nanette’s blue eyes widening when she saw me walk into her groupa room with Charlotte on our last visit to the baby house.  She was accustomed to seeing the other children and the staff come and go, but I was a novelty.  She scooted to the railing of her playpen and struggled mightily to pull herself up.  She nestled easily into my shoulder and began to absent mindedly play with my necklace.  For a few minutes, I stood and rocked both girls—Charlotte on my right hip and Nanette on my left.  Noticing that she was getting drowsy, a caretaker came to take her to her bed.  She waved a chubby hand at us from over the caretaker’s shoulder.


Nanette, July 2012.


I wonder what she dreamt about.

I remember the moment when Kacey laid her scarred hands in my lap and stole my heart.  She questioned if she had a mama—and if I was it.  She clung to my leg daily when I brought Charlotte back to her groupa room at the end of our visits.  She smiled as I stroked her hair and told her just how pretty she was.  She hugged our Charlotte goodbye on Gotcha Day—and undoubtedly has done the same for the other children who have been chosen.



Kacey, July 2012.


Nanette and Kacey are facing imminent transfer.  They will leave the only home and family that they have ever known.  Where they are now, they are loved and appreciated for the beautiful little girls that they are.  Where they are going will likely not be the same.


Their director has been their voice and their champion for the last four years.  There is nothing more that she can do for them.  She cannot save them from the natural passage of time.


Is Nanette your daughter?  Is Kacey your daughter?



If you think either one might be, please contact me so I can connect you with an agency that works in her region and country.



If adopting is not something you can do right now, please share this blog post and their pictures.



Can you answer the call?







********************


The winner of our Three For Three Ipad Giveaway is :

Amy Boroughs 

Amy, please contact me via email with your info so we can send you your new iPad :)

Saturday, August 4, 2012

Urgent prayer request

A year and a half ago I witnessed a miracle happen on A Perfect Lily. I had asked Andrea Roberts from Reece's Rainbow to give me the name of the most desperate child listed there. She gave me the name of a little boy I have come to love, and now affectionately call my "nephew".


Peter had been waiting many years on Reece's Rainbow - without one inquiry. His medical needs seemed to have scared people off, and Andrea told me that his only hope of a family committing to him was a full grant. At that time Peter had a few thousand dollars in his grant fund. I challenged Lily's readers to help get Peter a full grant of $20,000 in the hopes of attracting a family. We ran the Pure Love Giveaway...and in five days a family stepped forward to claim him. Lily's readers raised over $15,000 for Peter, and this past January the Kehm family brought him home from Eastern Europe.

I can't go into details here, but it was nothing short of a MIRACLE that the Kehm's were able to rescue Peter. He almost slipped through their hands while they were in his country, and we spent several tear-filled days wondering if he was going to remain an orphan forever.

Peter's Gotcha Day


Tonight Peter needs another miracle. I'm borrowing from his CaringBridge page here (written by Christie Taylor) to let you know what we need to pray for..


 ************

July 31st, 2012, Julie took Peter to TCH ER for possible seizure activity.

Since that time, none of us could have envisioned all that would unfold. 


Peter has had an EEG and has been confirmed he is having seizures. He is now on Keppra. A few months ago the endocrinologist ordered an MRI of Peter's brain to check his pituitary gland to see if it, maybe, it were affecting his nystagmus too.

Well, the neurologists read the MRI this week and learned that Peter has amino acid build up in/on his brain forming plaques (I believe) and that pointed to a possible metabolic disorder. Blood tests and genetics testing ensued and it was discovered his ammonia levels were INCREDIBLY high. Reaching levels of 190. Normal levels are 22-44.

This led to testing of his liver via ultrasound--this ultrasound revealed some alarming and unexpected news. The vascular distribution of his liver is so uncommon anatomically that not one doctor at TCH has ever seen anything like it. Basically, as Julie said on FB, "Peter has a vessel that is supposed to take his dirty blood to his liver so it can be cleaned of ammonia and urea, he does have both of those vessels. One does its job, the other goes straight back to a main vein that carries the dirty blood to his heart. His ammonia level got up to 190. Normal is 22-44. He has had some other liver panels come back off as well and they want to do a liver biopsy. When they plan to do this I dont know, so I am just sitting up here with him until they decided what to do. And I dont know how they fix this. He is on meds for seizures, and a med to bring his ammonia down."


As it seems right now, a biopsy will be done at some point in the very near future (but not over the weekend). Peter is puking with every feeding. He is lethargic. He has been through 2 doses of lactulose (the med to bring the ammonia down) and it has only gone from 190 to 140. This is not good and not what we were hoping for to say the least. As it is right now, Julie has no definitive answers. Cam is across the world working and she is going it alone at the hospital.


I am not sure if the doctors are still thinking metabolic disorder coupled with seizures OR if this is seizures coupled with a congenital liver defect.

I will post more as I know what is going on. Keep the family lifted up. They've been hit so hard lately. Thank you, and you can leave cards for Peter just like we did for Kai at 
http://www.texaschildrens.org/Support-a-Patient/Greeting-Cards/







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By way of explanation- last month Julie's son Kai developed a rare and life threatening reaction to a medication he was taking. Julie and Kai spent weeks in the hospital, and at that time little Kai was fighting for his life. It is unthinkable that just a few short weeks later Peter is now doing the same. 

I am asking Lily's readers to rally for Peter the same way you did in February 2011. Will you bombard Heaven with prayer for Peter right now? And will you flood Peter and the Kehm family with online cards (link just above) letting them know we are lifting him up in prayer?


 I am determined to go meet my nephew one day, and tell him in person how many people loved him home.


So many miracles have happened for Peter...will you pray with me for one more?

I can't take it

My friend Kelly is going to guest post for me shortly and say this better than I can. But for now, will you please pray for Kacey to find a family soon?



She literally is going to be transferred in a matter of weeks and I just can't take it. I've had four readers contact me and tell me they wanted to adopt her, but so far I've heard nothing back.

Please, please, PLEASE spread the word that Kacey needs a family as soon as possible.

Thursday, August 2, 2012

bring it on, Samantha Brick

*note: in the UK Down syndrome is referred to as Down's Syndrome


Samantha Brick admits that she would seriously consider aborting an IVF baby if she discovered that it had Down Syndrome
By Toni Jones

41-year-old Samantha Brick is desperate for a child.
Having tried to conceive naturally without success for four years her and her husband embarked on their first round of IVF treatment earlier this year.
The gruelling process has a very small chance of working for women over the age of 40.
Yet today the journalist told This Morning that if she does manage to conceive and then learns that the baby has Down's Syndrome she would seriously consider aborting it.




Last week the Daily Mail reported how dozens of IVF babies are being aborted because they have Down's Syndrome.







Despite spending thousands of pounds on trying to conceive many women are deciding to abort babies after learning that they will be born with the genetic condition, leading some anti-abortion campaigners to claim that they are treating babies like designer goods.




Is it right to choose the option of a termination after under-going such an emotional and physical treatment?







Samantha believes that it is totally justifiable.


She said:
'My husband and I have been trying for a baby for four years. It is not easy, all around me friends are conceiving and building up their families.
'Every month you hope for the miracle baby, and when that doesn't happen you just keep going and keep going.
'My first attempt at IVF failed and my husband I have discussed in depth and at length whether we could keep a baby diagnosed with Down's Syndrome.'





'I live in France, I know that people there don't have the same support, I would have to send my baby to a centre on Monday morning and then welcome them back on Friday night.'





'I already have a large family including ageing in laws with their own problems and so it's not just myself that I have to think about it is everyone else in the family and what the impact would be on them.'







Samantha also raised the issue of being an older parent to a Down's Syndrome child.
She says: 'I'm 41 now. What will happen to that child with Down's Syndrome if anything happens to me?'





'I'm not just having a glass of wine and deciding to terminate a baby.'






'It's a huge decision and one I wouldn't take lightly at all.'







'I actually think it would be selfish to HAVE that baby because of the impact on the local health services, the cost of raising that child and the support it would need.'





As a journalist, Samantha has spent four years researching the risks while she has been trying to get pregnant as an older mother, she says: '50-70 per cent of couples who have a child with a disability end up spitting up.
'I want to have a child with my husband because I love him, I'm really happily married and I can't forget him as a factor.
I would love to have a child but he has a right in this argument too.
I would hate to end up as that statistic.'






Talking exclusively to the MailOnline after the interview Samantha said: 'I absolutely stand by my comments and the position I took today. Far from being selfish, I believe I'm being selfless in putting the needs and wishes of those around me above my desire to be a mum.'







'Its important to honestly debate such a difficult issue especially as 9 in 10 women will terminate such a pregnancy.'







'My family and I have between us worked with hundreds of people with Downs Syndrome.'



 Let's stop 'Disneyfying' this genetic condition and ensure families, and potential parents, can debate and discuss and have the full unbiased facts of exactly what they're getting into.'





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                                                    Bring it on, Samantha Brick. We welcome the discussion.



For you created my inmost being; you knit me together in my mother's womb.
Psalm139:13