When a Difficult Diagnosis Means Hard Decisions

Kelly P with her son

Kelly with her son John

Hand to Hold Helping Hand Peer Mentor Kelly P. is the mother of John, who arrived early with a rare congenital condition and who earned his angel wings at eight months old. She was matched with Kathy M. who requested a mentor due to her son Nathan’s diagnosis with a life-threatening condition. Together, they are navigating this difficult journey together and despite the hardship and pain – finding hope and a measure of healing in the midst of it all.

Kelly P

One of the blessings that has resulted from the difficult life and premature death of our son John is to walk with others as they face a similarly difficult road. Before having John, I had neither the empathy nor the insight into sitting with someone learning how to care for their special needs child. Now Helping Hands has allowed me to serve in a way that I might lend a hand to others, as others so faithfully lent hands to us while we needed it.

Through supporting others I am encouraged because I can share just a tiny piece of John with those who never got the chance to meet him.  His short life is lengthened whenever I share a part of his story with others who want to know how I “made it through those difficult times.”  And it helps to me to experience some of the joy of John that we had while he was with us.

Kathy M and her son

Kathy with her son Nathan

Kathy M

I am very thankful to have been matched with Kelly through Hand to Hold. She was one of the few people I could talk to about my NICU experience and all of the hard decisions we were facing without feeling like I was a tremendous burden. Everything was so heavy and I didn’t feel I needed to filter what I said to her for fear of being judged. She was in a different, yet similar situation. Through sharing the similarities in our stories, she provided me with affirmation that what we are going through is hard and there is still hope in the midst of it.

One of the most beautiful, unexpected things that came out of our meeting were a couple of book suggestions she gave me. I love to read. Reading, journaling and blogging have been very helpful for me to process all of Nathan’s special medical issues and what the future may, or may not, look like for him. The first book she recommended is, The Power of the Powerless by Christopher De Vinck and the second is Can You Drink the Cup? by Henri Nouwen. I will return to these books again and again knowing they also provided encouragement to another kindred spirit.

Being matched with another person who has been through something resembling my experience makes me feel not quite so alone and a little bit more hopeful, especially on the harder days when I really need it.

Feeding Tube Awareness Foundation

Interviewed by Erika Goyer, Hand to Hold’s Family Support Navigator

Making the decision to tube feed is never an easy one. Tube feeding is frequently associated with gravely ill adults, not as a way to help children get the nutrition and hydration they need to be able to grow, thrive, and develop. And tube feeding can be a scary prospect for parents, but it doesn’t have to be. Thanks to moms Traci Nagy and Laura Wagner.

Never Underestimate the Power of Parents

Harmony getting a bolus feeding, Courtesy of FTAF

Harmony getting a bolus feeding, Photo Credit: Wagner Family/FTAF

Traci Nagy’s son, Lucas, received his first feeding tube in August 2008 at two months of age. She wasn’t satisfied with the resources available to new parents on tube feeding and the general lack of awareness among the general public of the benefit tube feeding can have to medically complex children like her son. In June 2010, Traci launched the “Let’s Get a Tube Fed Child on Sesame Street!” campaign on Facebook. In October 2010, she galvanized an effort to create Feeding Tube Awareness Week which resulted in creating the organization, website and Facebook support page.

Laura Wagner’s daughter, Harmony, has had a feeding tube since she was born in June 2009. Laura has been an advocate for creating awareness through her blog and her group on Babycenter.com, Special Needs and Medically Complex Kiddos. She pushed to make the Feeding Tube Awareness Foundation a non-profit organization.

A Movement is Born

Feeding Tube Awareness was founded in 2010 as a means of supporting parents of tube fed children and raising positive awareness of tube feeding as a life-saving medical intervention. Tens of thousands of infants and children are able to live, grow and thrive because of tube feeding.   The organization is dedicated to providing parents and caregivers with practical information needed for day-to-day life with a tube-fed child. In addition, FTA strives to raise positive awareness of tube feeding as a life-saving medical intervention, so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care. Traci and Laura want tube feeding families to know that they are not alone, even though they can sometimes feel like they are.

I Love a Tubie

The group’s logo “I heart a tubie” sums it up nicely. It is a symbol of embracement and empowerment for families faced with a child whose medical conditions require tube feeding.

Feeding Tube Awareness Week is the second week in February each year! 

To get I Love a Tubie apparel and find out more about Feeding Tube Awareness Week visit the “Raising Awareness” page.

The Mission of the Feeding Tube Awareness Foundation

  • “Provide medical type information in language that sleep-deprived parents can understand. That’s why we also have how-to videos made by parents
    G-tube, Photo courtesy of FTAF

    G-tube, Photo credit: FTAF

  • Make tube feeding feel less scary and overwhelming. I have seen parents go through great lengths (often at the expense of their child’s health) to avoid tube feeding. Children need enough calories and hydration to live, grow and thrive. If they are unable to do it on their own, a feeding tube can help make sure they are getting what they need during critical stages of development. Children and parents quickly adapt to tube feeding and it becomes second nature just like everything else.
  • Change public perception of feeding tubes as being for the elderly at end-of-life. Public perceptions do not match the reality so many tube feeding families have. Tube fed children often don’t look sick. Children can reach their potential because they have the nutrition they need. Tube feeding can mean life is possible.
  • Show parents they aren’t alone. It is pretty easy to feel alone when you have never heard of tube feeding a child or met anyone with experience. But, there are hundreds of thousands of children who are, or have recently been, tube-fed in US alone. There are more than 5,400 parents, caregivers and supporters on the FTA facebook page and growing.”

If You are Considering a Feeding Tube

If you are faced with the decision to tube feed, here are some questions to consider:

  • Is my child safely able to eat and drink enough to grow and develop appropriately?
  • Will my child be able to catch up on necessary weight gain on his own?
  • Is my child using too much energy to eat and drink?
  • Does my child have a medical condition that will make it more difficult for her to maintain a healthy weight?

Join the Cause

Visit their website www.feedingtubeawareness.org or contact them through their contact page.

Feeding Tube Awareness’ facebook group offers real-time support and knowledge sharing among thousands of parents and supporters.

You will find a wealth of information, resources, and inspiring stories.

Hand to Hold especially loves the information page created to educate friends and family about feeding tubes and how they can support the families who use them!

photo courtesy FTAF

Photo credit: FTAF

Let’s Spread the Tubie Love!

Maribel Farish and Her Son Daniel

Hand to Hold is created by parents and for parents. Every one of our staff and board members has had their lives touched by either prematurity or a NICU stay – or both. So when we started Hand to Hold we didn’t just want to build a non-profit – we wanted to build a community.

Not every one will need every service we offer. But we want you to know that these resources are here for you if you do. Mostly we want you to know that you are not alone.

In this Helping Hand Highlight, Mom Maribel Farish shares the programs that have worked for her and the many ways Hand to Hold has touched her and her family’s lives.

How did you hear about Hand to Hold? What were you looking for? What did you hope to find?

My son Daniel was born on March 2, 2010, at 31-½ weeks in Brownsville, Texas. Within a week of his birth, he was life-flighted to Texas Children’s Hospital (TCH) where he spent three months in the NICU III. During this time, my husband, George, commuted regularly between Brownsville, Houston, and Austin. In August of that year, George started in the full-time MBA program at UT Austin while I stayed in Houston to look after Daniel and continue with follow up visits to TCH. Daniel and I finally joined George in September.

After a month of living in Austin and feeling extremely overwhelmed with Daniel’s medical needs, I reached out to a friend of my mother-in-law who told me about Hand to Hold. I immediately looked up Hand to Hold’s website and dialed Kelli’s number.

When I contacted Kelli, I did not know where to start looking for the endless list of specialists and therapists that my son needed. Even though I lived a few blocks away from Dell Children’s Hospital, I was hoping to find a parent that could tell me about his or her experiences with different doctors and therapists in the Austin area.

What was having another parent to talk to like? Did you find it helpful?

When I spoke to Kelli, I felt that we were speaking the same language. She understood how I felt. Talking to someone who has gone through a similar experience made a big difference for me. Even though we had never met or spoken before, she knew exactly how I felt as well.

Kelli directed me to a variety of helpful resources for doctors and therapists. She also matched me with another parent who had been in a similar situation. The parent that she matched me with had also moved to Austin within a few months of her daughter’s birth, and the parent found herself in a very similar situation to mine. That parent happened to be Marty Barnes.

Marty was very helpful in advising me how to navigate the inter-workings of the regional medical system. I was so impressed with the website that she designed for her daughter and mainly with how calm and at peace she seemed. She helped me believe that my family’s emotional storm would eventually pass! [Read more…]

A Brotherly Bond

Enjoy his heartwarming video of two brothers Conner, 8,  and Cayden, 6, Long,  who compete in triathalons despite Cayden having cerebral palsy.  Tom Rinaldi of ESPN’s E:60 really captures big brother Conner’s voice and why competing with his young brother is so important to him.

“Ignoring” Typical Developing Siblings

A Hand to Hold friend and supporter sent me the link to a blog entry responding to an article that was  published as the cover story for the New York Times Journal this past weekend. Just another reminder that raising a typical developing child while also raising a child/children who have extra needs is extremely challenging. Please read below and share your ideas with us.

Ignoring ‘Typical’ Siblings

By LISA BELKIN

The cover story of The New York Times Magazine this weekend (you can read it online here) is a riveting look at two 4-year-old girls — conjoined twins — who seem able to feel each other’s sensations and read each other’s thoughts. It is fascinating science. It is also a thought-provoking parenting story.

How to raise children who are so different, in a home where three other siblings have needs too? That question is writ large for the family of Krista and Tatiana Hogan, and faced every day by parents where one child is disabled, or ill, or particularly talented or depressed, or in need of extra attention for whatever reason.

As my colleague Susan Dominus writes of the five days she spent with the family:

Rosa (the girls’ 8-year-old sister) paused for a moment … then changed the subject (from something the twins had just done) to tell me about the part she had in a school show, playing “the nerd sheep.” Just once, could a visitor’s attention be directed at her own extraordinary role in the world?

At first, the sight of their younger sister, (3-year-old) Shaylee, walking freely past the girls, struck me as painful, a constant reminder of their own constraints, her liberty a moment-by-moment assertion of superiority. But over time, my sympathies switched: the twins’ unity was so strong I wondered if Shaylee felt she was somehow missing an essential part of herself. When the girls wanted to wash their hands in the sink, they worked as one, silently, to drag the bench over to the bathroom. More often than not, they both seemed to want to slither like snakes at the same moment, to roll a ball down a ramp to the television room, to drift toward the electric piano. But acceptance, rather than mutual desire, might be at play: the family often reminds them they have no choice but to compromise, and Simms believes they have a private logic for determining whose turn it is to decide their whereabouts.

The way this family handles the differences, it would seem, is by allowing them to merge with the surrounding chaos. Living in the British Columbia tract house with Tatiana and Krista are their mother, 25-year-old Felicia Simms, their older and younger sisters, their 6-year-old brother, their maternal grandparents, three cousins, an aunt and uncle, and their father, who seems to come and go. Dominus writes:

Simms has always appreciated what she characterizes as her mother’s easygoing ways. It was Louise who paid for her first facial piercing, at age 12, and who accepted the news easily when she learned her daughter was pregnant three years later. “We were never normal,” Simms says, and “that was O.K.” She thinks that in some ways it was easier for her family to accept the idea of conjoined twins than it might have been for a family that was more conventional. They did not have to reinvent their sense of themselves, the image they presented to the world. “In my house growing up, everything didn’t have to be perfect,” she said. “I never had to be like everybody else, look like everybody else.”

Unless the twins are having a rare health crisis or are being followed by video cameras (the National Geographic Channel showed a documentary about them last year), they are part of the general background din of the house and a far less dominant issue than the pressing financial concerns. The adults of the family tend to congregate around the long dining-room table, where the girls’ grandmother runs both a delivery business and the household — directing drivers, calling out to the twins to stop teasing their little sister and planning dinner for everyone.

It works for them. What works for you? How do you raise a child who is different while still giving attention to their siblings?

Please share your ideas with us.

That’s Not Fair

As the parent of a “typical” developing child and a child with special needs, I am constantly hearing the phrase “that’s not fair” out of the mouth of my 7 year old son. Most of the its not fair talk is completely normal and expected, but when those words relate to his sister, I struggle with how to explain to Cameron why we do things differently with her at times than with him. The more I speak to other parents who are in similar situations, the more I realize that this is a challenging thing for parent to tackle. After four and a half years, I have managed to find an answer that makes sense to Cameron and creates peace in my own mind about parenting my two children as differently as we do. I thought I would share what has worked with my own family and experience here.

When I hear the words “that’s not fair” come out of Cameron’s mouth, I simply tell him that life is fair it just is not always equal. I then tell him that fair is not about getting the same it’s about getting what we need. Not only can this be applied to most of our parenting between our two children, but it can be applied to most situations in life. I have used that phrase with Cameron when we are talking about situations that happen outside of the home as well. It has worked well and I think that it has helped Cameron understand that we parent differently because he and his sister have completely different needs.

Summer Sibshop

I wanted to spread the word that I will be facilitating a Sibshop at the Texas Parent to Parent Conference in June of this year. For those of you who are not familiar with Sibshops, they are “lively pedal to the medal celebrations of the many contributions made by brothers and sisters of kids with special needs,” says Don Meyer. Sibshops provide opportunities for peer support in a recreational context. We play lots of games, have great conversations and spend time celebrating siblings. Registration will be available shortly. If you are a parent of a child with special needs you don’t want to miss this conference and if you have additional children you will not want them to miss the opportunity to participate in a day that is just for them. Enrollment is limited so make sure to check the website listed above or this blog frequently for updates.