Choosing Hemophilia

One of the first steps in the adoption process is filling out a Medical Needs Checklist, which is a daunting task. Typically, when adoptive families are considering whether they would be able to parent a child with particular needs from such a list, hemophilia jumps out as one of the scarier needs. That make sense. Hemophilia is pretty rare – only about 1 in every 5000 boys are born with this need. That means most of us have gone our entire lives without meeting someone with this condition. Because of that, most of us likely have very little information about this need, or we might even have some misinformation. Before I adopted my son, all the knowledge I had about hemophilia came from my high school world history class in which I learned that hemophilia was “the royal disease” that made people bleed a lot. That was it. Like many people, I assumed that hemophilia meant that a child might “bleed out” from a simple cut or scrape. Thankfully, I was wrong! That couldn’t be further from the truth. I have learned much since my first exposure in high school world history class, because my son has hemophilia. I have the privilege of watching him grow, learn, and joyfully engage with life. He is a typical boy who just happens to have a bleeding disorder. Hemophilia is very manageable, and it’s just a small part of our lives.

So, what is hemophilia, then? Children and adults with hemophilia are missing a protein in their blood that helps the blood to clot. These proteins are called clotting factors. To understand how to care for a child with hemophilia, it helps to know a little about the clotting process. A good analogy for the clotting process is a set of dominoes. Remember how you used to line dominoes up and then tip the first one over to watch them all fall in succession? The clotting process works the same way: there are 13 proteins, called clotting factors, that all work together, in succession, to build a stable clot. But, if one of those proteins (or dominoes) is missing, the clotting process stops prematurely. The most common type of hemophilia, Hemophilia A, occurs when a person is missing Factor VIII (factor 8). This is the kind of hemophilia my son has. Children with hemophilia bleed longer than others, not faster, and they bruise more easily than you and I do. Cuts and scrapes are treated much the same way as for a person with typical clotting. The biggest risks in hemophilia are bleeding internally, such as into joints, muscles, or soft tissues. But, the good news is that hemophilia is very treatable, and these children live happy, healthy, long, joyful lives.

Treatment of hemophilia involves replacing the child’s missing clotting factor. Usually, children receive intravenous (IV) infusions of their missing clotting factor two or three times per week. That may sound daunting, but it takes only a few minutes! We do my son’s infusions before breakfast (his choice) three times per week. Some children receive infusions peripherally (into a vein, like my son), and other children have a port into which their infusions can be given. When my son first came home, we had a wonderful home health nurse who came to do his infusions. After he was home for a couple of years, our Hemophilia Treatment Center trained me to do them myself so that we could treat on our own while traveling or when our nurse wasn’t available. I can’t say enough good things about the supportive care my son receives from the Hemophilia Treatment Center (HTC). They patiently answered my umpteen questions before my son came home, and the whole treatment team (a hemophilia nurse, pediatric hematologist, social worker, physical therapist, and education specialist) continue to be tremendously supportive as he grows. You can check the HTC Directory here to see if there is one near you.

You might be wondering what everyday life looks like for a child with hemophilia. Today, my son went to public school where one of his favorite activities is running on the playground. When he came home, he did several somersaults on the couch (much to my chagrin), and we played basketball outside on our driveway. He runs, jumps, falls, and gets back up again. In other words, he does all the things any other child does. The only activities I (and the HTC) restrict are contact sports like football and hockey. Heading a ball in soccer would be risky, too. (These activities would also be risky for a child without hemophilia!) He knows a lot about his condition, and he is even learning to do his own infusions. We spend just a few minutes per week on infusions, and those don’t happen every day. Otherwise, life looks like what you’d imagine with any child.

If you are thinking about whether to check “hemophilia” on your Medical Needs Checklist, know that it’s a very manageable need. You can read other family stories on the No Hands But Ours site. There is a wonderful, supportive group of families that would be happy to answer questions: just join the Hemophilia Adoption Advocacy Facebook Group. Reach out to your state’s chapter of the National Hemophilia Foundation. You will find that the bleeding disorders community is close knit and incredibly supportive. Finally, reach out to your nearest Hemophilia Treatment Center (HTC) and ask questions! I was fortunate that my HTC even reviewed my son’s file before he came home. They answered every question I had, and I have since discovered that they were right: hemophilia is a manageable need. If I can do this, I’m sure you can, too!


Kelly Cartwright is lead Mentor Mom for Hemophilia with No Hands But Ours, former member of the Board of Directors for the Virginia Hemophilia Foundation, and mom to an amazing boy with hemophilia and an equally amazing daughter. In her day job, Kelly is a professor of psychology and neuroscience, specializing in literacy and human development.


ADVOCATING

A few months away from 7 years old, “Ari” likes riding a bike, living life in tandem with his foster sister, and playing with toy cars. He currently attends kindergarten with his foster sister. Sadly, his birth family likely found themselves unable to care for his medical needs given that he has hemophilia. He needs a family committed to honoring his relationship with his foster sister who is also waiting to be adopted. He’s currently available through Madison, a good agency which is offering a $500 grant to the family who wants to make him their son. Contact info@sparrow-fund.org to learn more about where he is and our experience with him, and contact Sarah at Madison to learn more about him and what the process would look like.

Sneak Peek at Together Called 2018 Breakout Sessions

In less than 3 weeks now at our 6th annual Together Called retreat, we will hear and learn from Jeffrey and Katherine Reed during the keynote sessions while Philip and Jessica Morlan of Seeds Family Worship lead us in worship. We’ll also be blessed by a number of other people sharing throughout the weekend. Here’s a sneak peek at who will be sharing what!

Friday Pre-Conference: Becoming One by Overcoming Daily Conflicts
We all long for connection and fun and oneness with our spouse. In fact, that was God’s idea too! Even moreso, we have big ideas about the kind of family we want to provide to our children and ways we together want to impact the world. But daily differences and conflicts can nibble away at our sense of connection and common purpose. Join Jeff and Cheryl as they share some of their own journey as adoptive parents and offer practical ideas about how to navigate differences and foster a fun, growing, intimate marriage.

About the speakers:
Jeff and Cheryl Nitz bring both professional and personal experience as they offer insights, challenges, and encouragement to families whom God has brought together through adoption. Jeff is the former Sr. Vice President of Adoption & Family Services for Bethany Christian Services and is currently the Chief Operating Office at Patrick Henry Family Services in Virginia. Cheryl is a therapist and the Director of the Attachment & Bonding Center of PA, specializing in working with families impacted by adoption, trauma, and attachment challenges. She also currently serves as an Associate Professor at Liberty University. But, Jeff and Cheryl often say their best education has come from being parents to their four kids (two of whom came to the family through adoption) and grandparents to four. Most importantly, Jeff and Cheryl are presenting as fellow sojourners—sharing with other adoptive parents the joys and challenges and lessons learned and deeply committed to fostering a fun, growing, supportive marriage in the midst of chaos!

All About Sensory Processing: What You As Parents Need to Know – Christine Achenbach 
The relationship between sensory processing disorders in our children, meaning challenges they have processing sensory messages coming from the environment in a smooth and efficient manner, and attachment is complicated and not completely understood. However, we know children with hard starts are at an increased risk for developing sensory processing disorders. In this session, Christine Achenbach, SPD export, will help guide you to be able to recognize symptoms of SPD in your children, discern when and how to get outside help, and explore potential resources and strategies that work for your family to manage sensory integration challenges.

About the speaker:
Christine Achenbach, MEd, OTR/L, is the academic fieldwork coordinator in the Elizabethtown College Occupational Therapy Department and the sole proprietor of Chris Achenbach’s Therapeutic Services, LLC. She has clinical experience with children and adults and with a variety of diagnoses over her 30 year career. Her specialty is sensory integration /sensory processing disorder. She’s partnered with Bethany Christian Services and ATTACh for parent and professional training. She guides master’s OT students through their graduate projects in the area of SPD and trauma. In 2017, she joined About Child Trauma whose mission is to educate about the impact of trauma in children. Chris is the parent of a grown biological son and has fostered a daughter who had SPD/trauma concerns.

Fostering a Collaborative Partnership With Your Tween/Teen – Sage Windemaker
As parents, we desire and are divinely called to come alongside our children to help them figure out who they are. But, it’s no easy task to strike a balance everyday between providing wise influence and empowering our children to make good choices that are congruent with who they are. In this workshop, Sage will introduce you to the Collaborative & Proactive Solutions approach from Dr. Ross Greene that helps caregivers focus less on modifying kids’ behaviors and more on partnering with kids to solve the problems behind behaviors. This nonadversarial approach allows our children the opportunity to participate in solving the problems that affect their lives and guides us on how to do it in a way that fosters the most desirable human instincts.

About the speaker:
Sage Windemaker is a licensed clinical social worker based in Kennett Square, PA. Her experience includes providing post adoption counseling support to families though Chester County Children Youth and Families, recruiting training and supporting therapeutic foster parents in her role within the therapeutic foster care program at Child and Family Focus, directing the Kennett Square office of The Peacemaker Center, a community-based outpatient mental health center, and now continuing her work with children, couples, and families in private practice. Sage is passionate about working with her clients from a holistic perspective and draws upon a broad range of techniques and therapeutic modalities including trauma-focused cognitive behavioral therapy, mindfulness-based stress reduction, expressive and play therapies, and therapeutic yoga skills. Sage is also a wife to her husband Dylan and mother to two little girls, Emsley and Ivy.

Walking Alongside: Helping Our Kids Process Their Stories and Ultimately Discover Healing and Forgiveness – Cheryl Nitz
It can be so difficult to talk with children about traumatic events in their history (abandonment, neglect, physical/sexual abuse, parental drug use, sibling loss, disrupted placements). How do we balance tenderness with honesty? How do we minister to them and help them move on? How do we decide what to tell, when, and how much? Come learn tools and principles to help children process emotions and beliefs, develop healthy attachments, and ultimately heal.

About the speaker:
Cheryl Nitz, ACSW, LCSW has worked in the field of adoption and foster care for over 30 years. In 1997, she began specializing in working with families impacted by adoption, trauma, and attachment challenges and is now a therapist and the Director of the Attachment & Bonding Center of PA where she and her staff are committed to joining with parents to help their children find hope and healing through the love and security their families provide. In addition to her
professional experience, she also currently serves as an Associate Professor at Liberty University. However, Cheryl often says her best education has come from being a parent with her husband to their four kids (two of whom came to the family through adoption) and grandparent to four. She presents as a fellow sojourner, sharing with other adoptive parents joys and challenges and lessons learned both in the trenches at the Nitz home and from the families with whom she has had the privilege of working.

Strengthening Your Core: Embracing Your Brokenness as Adoptive/Foster Dads – Jeff Nitz
One of the most difficult aspects of being a dad to kids from hard places is that they can reveal just how broken and helpless we are. As men, we naturally want to fix problems. But, what do we do when we not only can’t fix our kids or our families, but ourselves as well? The counter-intuitive and honest answer is the one that leads us through humility to wholeness and the experience of freedom. In this session, Jeff Nitz will capture some of the key concepts from The Sparrow Fund’s Recharge men’s retreat. For those who didn’t attend, come learn what you missed. If you attended, come for a refresh of Recharge!

About the speaker:
Jeff has spent the past 30 years working in the field of child welfare social work with experience in foster care, residential treatment, foster care adoption, international and domestic infant adoption as well as Safe Families For Children. He is the former Sr. Vice-President of Adoption and Family Services for Bethany Christian Services and is currently Chief Operations Office at Patrick Henry Family Services in Virginia. Jeff has been married for over 30 years to his college sweetheart, Cheryl, and counts her as his very best friend. Together, they are the parents of four adult children ages 24 to 38, two of whom came to the family through adoption. As a licensed clinical social worker, he also enjoys serving with his wife in providing counsel and sharing lessons God has taught them to couples who are struggling in their marriage.

Real Self-Care: Moving Towards Wholly and Holy Living – Kelly Raudenbush
Self-care is more than making sure you schedule a night out with friends. Real self-care involves the work of exploring how your own history impacts who you are today and how you see the world. It involves paying attention to those messages you have playing on repeat in your head and discerning what is good and what is true. In this session just for women, Kelly will share her own journey of real self-care and provide an opportunity for you to either begin your own journey or go deeper in discovering who you are, why that matters, and how God wants to meet you there.

About the speaker:
Kelly Raudenbush, MA cofounded The Sparrow Fund with her husband Mark in 2011. She also is a therapist at the Attachment & Bonding Center of PA specializing in coming alongside foster and adoptive families. Kelly has a particular interest in (a) engaging and empowering parents who are struggling in their attachment to their children, (b) helping parents walk with their children as they process their hard stories, (c) encouraging couples in their pursuit of each other and unity in parenting, and (d) empowering orphanage staff in China to foster connection with children and each other. Mark and Kelly have been married for 20 years this year and have four children, one of whom joined their family through adoption as a toddler in 2010.

Conversations About Homeland Trips
Many families with internationally adopted children have some sort of interest in a homeland or heritage trip back to the place of their child’s birth. But, there is a whole lot to consider before you start planning a trip like this for your child or whole family. Kelly Raudenbush will facilitate an informal panel discussion with Melissa Corkum, adoptive parent and adopted person from Korea; Juliet Ercolano, adopted from China; Ari Anderson, adopted from Latvia, and her mother Tara about the potential value of homeland trips, challenges to consider, and suggestions for ways to prepare your child and family.

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