The Best Holiday Gift

The Children’s Organ Transplant Association is an organization to which we have guided many of our donors over the last several years. Last week, they provided us with a beautiful holiday story about one of the children that donor funds helped. In the spirit of the season, I thought it appropriate to share here.

-Sara

During a season filled with lists and wishes, the holiday gift one Utah couple hopes for is one often taken for granted: a healthy family.  For this family, one wish has already been granted.  Now they wait for the ultimate gift … the gift of life.

Last November, Brian and Emily Hoopes received a precious gift in the form of a long-awaited adoption.  Their story began on Halloween 2008 when Baby Patrick was born in Michigan.  The young Salt Lake City area couple adopted Patrick when he was just one-week-old, bringing him home to Utah a month later.  From the outset of the adoption process, Brian and Emily knew Patrick was a very sick infant.  They were told the baby only had a few centimeters of small intestine and until he could get an intestinal transplant, Patrick would require constant medical attention.

“Beyond knowing he would need lots of medical care we also knew Patrick’s life had been a series of miracles up until that point. We hoped those miracles would continue and we decided to forge ahead with hope, despite an uncertain future,” said Emily.

Knowing the road ahead would be rocky given Patrick’s diagnosis of short gut syndrome, Brian and Emily joyfully initiated the adoption process and returned to Utah to their large network of family, neighbors and church friends.  Their network of acquaintances expanded rapidly to include Patrick’s medical team of gastroenterologists, surgeons, nurses, pharmacists, dieticians, developmental specialists and many more medical professionals.  This couple’s dedication and commitment to a tiny infant remained unwavering even as they discovered the harsh realities that laid ahead for each of them. 

The specialists at Primary Children’s Hospital in Salt Lake City, Utah, told Emily and Brian they would need to go to Seattle Children’s Hospital, an 840-mile trip, to further investigate the possibility of a life-saving small bowel transplant.  They made their first trip to Seattle in early 2009.  That trip was successful and Patrick was listed for a small bowel transplant. That’s when the waiting began. 

Just to maintain Patrick’s health while he waits for his transplant, the Hoopes’ pay co-pays for every doctor and therapist visit, and for every trip to the hospital emergency department in Salt Lake City.  Sometimes Patrick is in the doctor’s office more than once each week.  There are also co-pays for his medications; deductibles, and the costs of living at a hospital for a week or more at a time.  According to Emily and Brian, the Hoopes family has had to tighten their belt because Emily’s current full-time job is taking care of Patrick.

Intestinal transplants are a fairly new procedure.  With Patrick being listed for transplant at Seattle Children’s, Emily and Patrick need to travel to Seattle every three months for evaluations.  Each visit involves airfare and food and lodging for at least a couple days.  They also pay charges associated with seeing doctors outside of their insurance network.  When the transplant call does come and they need to get to Seattle quickly, Emily and Brian may need to charter a $10,000 flight to get Patrick to the hospital within the narrow time frame allowed by the surgical team.

It became very apparent, very quickly, that Brian and Emily Hoopes needed help.  Even though the Hoopes’ have health insurance coverage, they soon realized that regardless of how ‘good’ their insurance is, they are facing a huge financial burden — in addition to the stress of Patrick’s medical care they face on a daily basis.  In the midst of these difficult days, Brian and Emily heard about the Children’s Organ Transplant Association (COTA). 

“With the amazing assistance that COTA provided, we were able to pull together a group of friends and family who are working together to raise funds for transplant-related expenses, and to raise awareness of the transplant journey our family was facing,” said Emily.  Almost immediately, Emily became a regular contributor to Patrick’s website journal at www.COTAforPatrickH.com.  And, just as quickly, bloggers got online and started reading, and responding to, this mother’s riveting words of gratitude and hope.

After Patrick’s transplant, he and Emily will need to stay near the hospital in Seattle for about six months.  This family will split Brian’s income across two households in two states.  Undoubtedly, their out-of-pocket insurance costs will skyrocket and they will have co-pays for bi-weekly biopsies; for anti-rejection medications, and for IV nutrition, feeding therapy and home nursing. 

“When I consider the price of Patrick’s transplant journey, it is overwhelming.  However, COTA has given us hope, making it seem that one more miracle is possible,” said Emily.

Emily continued, “We have witnessed many little miracles since we found COTA.  Family, friends and neighbors have come together in amazing ways.  Strangers in our community have reached out to us.  Every little miracle gives us hope that a bigger miracle — a transplant — is in our future.  We’ve always considered Patrick’s life a gift.  We feel privileged to be his parents.  Some may think we gave our baby a gift by adopting him, but the reality is that he is giving us the ultimate gift by being our son.” 

The Hoopes family is getting ready for the holidays.  They are grateful for the ongoing support their COTA team continues to provide; they are grateful for their COTA website Journal readers and Guestbook visitors, and mostly, they are grateful for the selfless gift an anonymous family will soon give to Patrick … the gift of life. 

Truly the best holiday gift that can be given.

Perfection Not Required

I’m well aware of the pressures parents put on themselves to be perfect – though fortunately my children are too young to roll their eyes at me or tell me that I humiliate them every time I put the trash out in my bathrobe and fuzzy slippers. Yet, as I potty train my toddler or get up to feed the baby at oh-dark-thirty, I am constantly critical of how well I’m playing the role as the adult who shoulders the incredible burden of bringing up the next generation.

I have a laundry list of parenting faults – I’m a little high-strung, I hate to mop the kitchen floor (negating any 30-second-rule for fear my kids will die of whatever has taken up residence there), I don’t find the emptying of an entire roll of toilet paper or tube of toothpaste particularly humorous and sometimes I put the pillow over my head and mutter, “if I ignore you can I sleep just 20 more minutes?”

And yet, my kids are lucky – they have parents who love them and are fiercely devoted to giving them the best life we possibly can. And that is enough perfection for them.

It is also the reasoning behind this month’s National Adoption Month theme: “You don’t have to be perfect to be a perfect parent: There are thousands of teens in foster care who would love to put up with you.”

Last month, President Obama declared November as “National Adoption Month”, to “honor those families who have strengthened America through adoption, and we recommit to reducing the number of children awaiting adoption into loving families,” and to “renew our commitments to children in the foster care system.”

The observance of National Adoption Month is more than just a celebration of adoption, it is a cry for more than 120,000 children who are in foster care awaiting a permanent family and an end to a life of turmoil. These are children who are not in the “system” by their own choosing, but have become without permanent home, family or support through tragic circumstances and the unfortunate choices of others. National Adoption Month aims to focus on the needs of these children, nearly 25,000 of whom age out of the foster care system each year and to remind each of us of our responsibility to the rising generation.

Every year, we are losing alarming numbers of these young adults who have “aged out” to cycles of poverty, crime, incarceration and death at far above the rate of their peers. Without a support system to prepare them for life on their own, many face an uphill battle that is rarely won.

It is this alarming fact that has lead AdoptUsKids, a  cooperative agreement between The Children’s Bureau, Administration for Children & Families and the U.S. Department of Health & Human Services, to highlight the message of “anti-perfection” – that even the quirkiest of us have something to offer a teen in foster care. Their PSA campaign reminds us all that each of us – foibles included – can make a difference in the life of a child in foster care by being a mentor, a foster family or by giving a foster child into a permanent, loving home.

We work with many individuals and organizations who champion this same message. This past year we helped Christmas Box International with their Lifestart initiative to help arm teens aging out of foster care with basic necessities. We champion the ideas set forth by Judy Cockerton of The Treehouse Foundation for their ability to make an impact. And we embrace the idea of reminding us all about the “forgotten children” who live among us.

At the very least, we ask that you hug a child in your life today. You’re a far greater parent, example or mentor than you realize. After all, you don’t have to be perfect to be a perfect parent.

-Sara