Green Room

Happy Birthday Bella

posted at 8:52 pm on May 11, 2012 by

Sunday is an important day in the Santorum house. On May 13th, we’ll be celebrating a birthday. My little sister, Bella, is turning four. As some of you can imagine, having seven kids in my family, we do a lot of birthday parties. Various sweets, party hats, and re-used gift bags are always floating around the house, waiting to be used in the next celebration. Our house is a happy one, full of life. That being said, Bella’s birthday is always uniquely joyful and the cause of grateful reflection. I say this because every year with Bella is a gift. Bella was born with a rare genetic condition called Trisomy 18. Of the 10% of babies with Trisomy 18 who survive birth, 90% won’t make it to their first birthday. When she was born, the prognosis was bleak. The odds were simply stacked against her.

 

Ten days after she was born, Bella came home from the hospital. As doctors explained to us how to best prepare for her death, we chose to celebrate her life. And we did, every, single day. I remember when we first brought Bella home; we hung a sign in our living room. It read, “Happy 1-Week Birthday Bella.” As the weeks went by, we changed the sign from 1 to 2 to 3 weeks. Eventually weeks turned into months and now, thanks be to God, years. We fought for her each step of the way, giving her every opportunity to do well. She beat the odds and has been doing so ever since.

 

As I reflect on this last year of her life, it has been amazing to see how many people Bella has touched and the issues that have been discussed in the public sphere as a result of her condition. In the middle of winter, when the world found out that Bella had been hospitalized, the response was overwhelming. Our inboxes and mailboxes were flooded with notes of encouragement, prayer, and support. People in all walks of life from around the country united around the witness of a three-year-old little girl. We even got notes that said, “I don’t agree with you politically, but thank you for being a voice for the special needs community.” She brought unity and refocused us on what was really important in the midst of a heated primary season.

 

When her hospitalization hit the news networks, commentators started discussing important issues surrounding the special needs world, such as the legal struggles that occur when special needs children aren’t given fair medical treatment or any treatment at all. A whole host of issues were brought to the forefront of the debate, dealing with families, the pro-life movement, the special needs community, and so much more. It was as though people realized that the pro-life movement doesn’t end at birth, but it continues at the bedsides of the disabled, the elderly, and the vulnerable. Bella put a face to the helpless, those whom society looks upon as “useless.” When did we become so utilitarian that we measured worth in terms of “ability?” Bella is able to do the most important thing in life more perfectly than I will ever be able to: love.

 

As people started to learn more about Bella, we discovered that more and more people were bringing their special needs kids to our campaign events. We even met several beautiful children with Trisomy 18. They talked to us about their struggles, and all were different, but there was a common thread in all of their experiences: the irreplaceable joy and love their child brought into their lives.  In a world too often focused on instant gratification and personal satisfaction, it is no wonder that these lives are considered “inconvenient.” Joe Klein talked about just that in an article he wrote for TIME several months ago: “I am haunted by the smiling photos I’ve seen of Isabella with her father and mother, brothers and sisters. No doubt she struggles through many of her days — she nearly died a few weeks ago — but she has also been granted three years of unconditional love and the ability to smile and bring joy. Her tenuous survival has given her family a deeper sense of how precious even the frailest of lives are. …. I also worry that we’ve become too averse to personal inconvenience as a society—that we’re less rigorous parents than we should be, that we’ve farmed out our responsibilities, especially for the disabled, to the state—and I’m grateful to Santorum for forcing on me the discomfort of having to think about the moral implications of his daughter’s smile.”

 

Bella has opened our eyes to many things: the importance of treasuring each day, how to hope even in the darkest of circumstances, that faith is our foundation, and most importantly, what pure, unselfish love looks like. So as we look back on another year of life, another year of miracles, we are filled with gratitude and hope. We are grateful for one more year of life with our precious girl. We are hopeful that through the witness of Bella’s spirit, people will continue to be inspired, challenged to think about the “moral implications” of my sister’s smile.

 

Happy 4th Birthday Bella

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Comments

Mrs. Santorum, could you move time New York? They could use a Senator that appreciates and celebrates life.

davidk on May 11, 2012 at 9:06 PM

SB “move to”, of course.

davidk on May 11, 2012 at 9:07 PM

Happy 4th birthday, Bella!

PatriotGal2257 on May 11, 2012 at 9:08 PM

Beautifully thought out and expressed…

Happy Birthday Bella….

God Bless every day of your life.

Markvike on May 11, 2012 at 9:09 PM

Aww… how sweet.

Happy 4th birthday, Bella!

DanaLynn on May 11, 2012 at 9:42 PM

God Bless you Bella, and Happy Birthday. I am sure Bella is so proud of her big sis. How sweet of you to honor her.

sybilll on May 11, 2012 at 10:18 PM

Happy Birthday, Bella! Here’s hoping that your bright smile and boundless spirit will be with us for a long time to come -

TeresainFortWorth on May 11, 2012 at 10:37 PM

Happy Birthday, Bella!! And kudos to Elizabeth for a well-written and very touching post.

Bitter Clinger on May 11, 2012 at 11:05 PM

Happy Birthday, Bella!

My son, my only child, whom I love very much, Micah, is severely autistic and mentally handicapped. When he entered the live of my wife and I, I was not the person I am now.

He taught me patience. He taught me joy. He taught me what sacrifice is. He taught me love.

I wish Bella and the rest of the Santorums peace, happiness and joy.

And Happy Birthday again, Bella!

MunDane68 on May 11, 2012 at 11:14 PM

Happy Birthday Bella.. She is such a beautiful little girl and I am sure she brings your family unmeasurable amounts of joy. God Bless you all!

melle1228 on May 11, 2012 at 11:58 PM

Happy Birthday!

Bella – Your family is blessed to you have you in their lives.

Laura in Maryland on May 12, 2012 at 12:24 AM

H a p p y B i r t h d a y , B e l l a !

Elizabeth, your writing is refreshingly so much better than other politicians’ kids (a certain Meg comes to mind).

itsnotaboutme on May 12, 2012 at 12:41 AM

Happy birthday little Bella! I wanna hug you-which is weird-because I don’t like hugging ANYONE. LoL
*Love, Momma Barb-Aspie wondergirl and mom of ‘Spawn’.

annoyinglittletwerp on May 12, 2012 at 1:08 AM

I wish her a happy birthday and hope she and her family will enjoy many more.

As this is a political blog I feel obliged to ask the obvious question. Families who are not as prosperous as the Santorums and the Santorums themselves would have benefited from the ACA. Why did the candidate Santorum then say again and again that the ACA would imperil Bella and make her treatment more difficult?

lexhamfox on May 12, 2012 at 4:14 AM

Why did the candidate Santorum then say again and again that the ACA would imperil Bella and make her treatment more difficult?

lexhamfox on May 12, 2012 at 4:14 AM

Because the ACA also includes “quality of life” and cost control considertions. So if a child is severely handicapped, there’s not much fiscal sense in life-prolonging treatment, if in the opinion of Obama’s panel of experts, the patient just doesn’t meet their quality of life.

Wethal on May 12, 2012 at 8:15 AM

Happy 4th birthday Bella, and may you have a 5th, and beyond.

rbj on May 12, 2012 at 9:00 AM

happy birthday, bellissima.

sesquipedalian on May 12, 2012 at 9:53 AM

Happy birthday, beautiful girl! And thank you, Elizabeth, for including us in such a heart-warming celebration.

J.E. Dyer on May 12, 2012 at 11:40 AM

What a beautiful picture and amazing post from Elizabeth.
Happy Birthday Bella!

Wethal on May 12, 2012 at 8:15 AM

I’d also like to add something. My child is severely disabled. Our state has a program for disabled children called the medicaid waiver. It allows parents to keep their children at home instead of making them a ward of the state. It is secondary insurance. We had to wait three years to get him on the waiver. Each year something new isn’t covered. There are pools of money for certain things and you have to apply. If the money runs out before your child’s name gets to the top of the list, you have to wait for next year. Reimbursement is way down so some doctors’ offices and agencies that serve disaabled children no longer accept it or don’t offer certain services like wheel chair fittings. This requires us to travel one to two and a half hours or more to other agencies that still do offer those services. Most specialist don’t take it. If they do, we have to wait weeks to months for an appointment and then wait an hour or more in their “clinic” to see the doctor. In short, it’s a microcosm of what the practical side of Obamacare will be for all of us-all the worst of Canadian and British healthcare services. Not sure if the Santorums have this in their state for Bella but there are many reasons to object to Obamacare and very few to support it.

hopeful on May 12, 2012 at 11:44 AM

Happy birthday Bella. God bless you and your family. Thank you big sister for writing this excellent piece.

Missy on May 12, 2012 at 11:56 AM

Happy Birthday Bella!

BKennedy on May 12, 2012 at 12:39 PM

Feliz Cumpleaños mi querida Bella! Que Dios te colme de bendiciones y te dé mucha salud.

Note: There is an amazing coincidence that tomorrow is Our Blessed Mother’s Day-and the anniversary of the Fátima Miracle. She is indeed taken care of by Jesus Christ’s mom.

ProudPalinFan on May 12, 2012 at 1:00 PM

That is an absolutely beautiful picture. Happy birthday, Bella!

Thank you for your essay as well, Elizabeth. It was well worth the read.

Anna on May 12, 2012 at 4:10 PM

You people are all sick in the head. you’re celebrating these insane religious fanatics these Christian Taliban’s choice to inflict a horrible short life on this poor innocent child. You slime bags disgust me.

Your Mamma loves me on May 12, 2012 at 4:27 PM

You people are all sick in the head. you’re celebrating these insane religious fanatics these Christian Taliban’s choice to inflict a horrible short life on this poor innocent child. You slime bags disgust me.

Your Mamma loves me on May 12, 2012 at 4:27 PM

What makes you think Bella’s life is horrible? Just because she has been sick and hospitalized? Most of the disabled children I know have happy and interesting lives in between whatever medical problems they may have. Bella obviously brings joy and love to the Santorum family.
Just curious-in your worldview, which disabilities are on your acceptable list and which fall into the category of no right to a live? Is it a specific disability you object to? The amount of years a person might live? Whether or not they may have medical problems?

You need to meet some special needs children and their families and spend some time with them. It’s eye opening.

hopeful on May 12, 2012 at 5:22 PM

Happy Birthday Bella. How wonderful that your birthday will be celebrated on Mother’s Day.

redridinghood on May 12, 2012 at 10:11 PM

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Ed Morrissey on May 13, 2012 at 4:24 AM