When I think of summer I am reminded of my childhood spent outside playing with my friends. We’d run barefoot in the grass or hang out at the pool. Sometimes I long for those days and what I realize that I miss the most is the companionship of my friends.
Being a mommy is isolating sometimes, and all too often as moms we tend to focus on nurturing our children’s friendships, but not our own. I’m certainly guilty of this, but I found that as I have become more involved in the hemophilia community, my friendships have blossomed. Sure, my best friends might live across the country from me, but that’s okay — I can virtually chat with them over social media, text and phone.
Some of the ladies I’ve grown to love over the last year are the wonderful “Infusing Love” mom bloggers. They’ve shared their lives and infused their own love through the blog each week. Over the next few months, you’ll be introduced to new bloggers – all are moms to someone with a bleeding disorder. You’ll meet moms of girls with hemophilia and von Willebrand Disease (vWD), you’ll meet moms with younger children, moms of older children (even adults), and you’ll meet a mom who lost a child with a bleeding disorder. Don’t worry, our “old” friends aren’t going anywhere – we’re just widening our circle of friends and their voices and experiences.
As moms to children with bleeding disorders, we share many common experiences. It’s reaffirming to hear that you are not alone in what you may be feeling or facing in your family. Maybe you haven’t hit those ages and stages yet, but isn’t empowering to hear the good (and sometimes bad) of what’s to come? I look forward to getting to know our newest bloggers and I hope you’ll join me in welcoming them. We get by with a little help from our friends, and I will always be willing to accept and give support through my friends.
Kelly Champagne is a single mom to her son, Micah, 12, and is currently living in Mississippi. She got involved in the hemophilia community in Texas in 2002 when Micah was diagnosed with severe Hemophilia A. Micah was diagnosed after falling hard on a toy. This incident led to accusations of child abuse due to his bruising. Kelly immediately got involved with her local chapter and support groups, and attended her first HFA meeting in 2003.
Since then, Kelly has become an advocate by helping lobby in Texas, Florida, and Alabama for issues in the bleeding disorders community. She has also worked as a patient advocate in the homecare industry for almost eight years. Her son, Micah, can easily be recognized as the poster child for C.J. Wilson’s Children’s Charities. In 2006, when he was a pitcher for the Texas Rangers, C.J. met Micah in the hospital. C.J. was inspired to start a charity based on raising awareness for hemophilia in honor of Micah in 2007. C.J. is now a pitcher for the Los Angeles Angels of Anaheim and is continuing to raise awareness and help the hemophilia community.
Kelly also participated in HFA Voices Campaign in 2011 where she shared her story of being a single mom raising a child with severe Hemophilia A andÂ Asperger Syndrome.
With no family history of hemophilia, Kelly found out at age 32 that she was a carrier of the mutated gene and was diagnosed with mild hemophilia. Having that diagnosis answered many questions she previously had regarding bleeding issues throughout her life.
Her son has had two ports and is on prophylaxis. They are currently in the transition to learn venous access. Kelly and Micah attend the Hemophilia and Bleeding Disorders of Alabama chapter functions, and Micah will be attending Camp Clot Not for the third time this summer. Kelly is looking to start support groups in Mississippi and is helping to build a chapter there. She and Micah reside in the southern part of the state and when she is not working enjoys going to the beach, fishing, roller skating, and bowling.
Samantha is a native Texan and is glad to have recently moved back to her southern roots. She has been gifted with a loving husband, Alex, and two boys: the oldest, Adoniah, is 3 years old and does not have hemophilia and Christian, who is 1 year old and has severe Hemophilia A. After the birth of her son without any complications, Christian was diagnosed after being circumcised at 7 days old. The diagnosis was shocking and painful with a week spent in the neonatal intensive care unit (NICU), two blood transfusions and lots of needle pricks. Although there was no family history, it turned out Samantha has been living withÂ low factor levels as a symptomatic carrier.
Before life as a mom, Samantha was a Development Director of a nonprofit and found great pride and self-identity defined by her work. She now has a new job title as a “stay-at-home-mom,” but her passion for nonprofits continues in the hemophilia community. Samantha leads her local NHF First Steps program and started a Houston Hemo Moms group and Hemo Mom blog of her own: www.BlessedBlood.com.
As a HypnoBirthing Childbirth Educator and a prenatal yoga instructor, Samantha also loves empowering women to trust in their bodies for natural childbirth and strongly believes in making informed choices in all aspects of health. Samantha has a strong faith.
Lovee’ Johnson-Lundy is a mother to four amazing children: she has two sons with severe Hemophilia A, Marques, 11, and Laithan, 4, and two daughters, MaRee’, 15, and Laithan’s twin sister Layla. Her husband, Charles, claims that he’s the one that encouraged Lovee’ to start blogging three years ago, which Lovee’ admits is partly true. She started a blog called “ProphyHolic Hemo Mom” which is comprised of random thoughts she has and situations she deals with being a Hemo Mom. “Prophyholic,” a term coined by Lovee’, means dependent on regular infusion therapy to prevent and protect hemophilia from impacting her sons’ life.
Lovee’s dad, who also had hemophilia, was crippled by his disorder and lived with chronic pain. Her goal is to make sure that doesn’t happen to her sons. Lovee’ says, “My dad was my biggest support system and was an encyclopedia on hemophilia. Unfortunately, he passed away in 2009; when Laithan was born a year later I felt alone in dealing with the challenges and fears of having another son with hemophilia. Yes, I had my family and my husband, but it was nothing like having my dad, my expert.”
Through her blog and the ProphyHolic Facebook page, Lovee’ was able to reach out to other moms using social media and realized how many resources were actually available in the hemophilia community. “I realized that my thoughts, feelings and decisions were similar to other Hemo Moms. I also learned how important it is be involved in the hemophilia community through advocating, volunteering in your local chapter and attending events. Yes, I still wish I had my dad to consult, but now I have a network of people to communicate with!”
As a tiger-raised tiger, who is now raising two tigers and a dragon (a la the Chinese Zodiac), Wendy is no stranger to ferocity, strength and determination – all of which she has had to employ at some point as a mother to two severe hemophiliacs.
The first time Wendy heard the word “hemophilia” was 12 years ago when her one-year old son was laying unconscious in a hospital bed receiving a blood transfusion that would save his life. The first time Wendy should have heard the word “hemophilia” was 14 years ago when she was repeatedly telling her daughter’s pediatrician about her severe bruises and joint swelling. But instead, Tai-yan was misdiagnosed with juvenile arthritis and given Naproxen, a dangerous medication for hemophiliacs.Â
Wendy thanks her lucky stars every day that her children were eventually properly diagnosed and treated and are healthy and happy individuals. Now she spends her days trying to make a difference in the hemophilia community by advocating and volunteering for HFA and the New York City Hemophilia Chapter. She also manages a communications consulting business and deals with the everyday headaches of being a mom to three very special teenagers.
Wendy and her three children – Khaliq (13), Tai-yan (15) and Kaya (15) live in Park Slope, Brooklyn. She says “I believe I was given this challenge in life for a reason. Over the years, I have discovered that there are multiple reasons, and I have even begun to see it as a blessing because of all the extraordinary people that I would have never met otherwise.”
When Tracy’sÂ son Nicholas was born 11 years ago, she had hardly ever heard the word hemophilia, much less know what it meant. Nicholas proved doctors wrong by not settling into the customary “honeymoon phase”, but rather had his first bleed at 8 weeks old. This set off a chain of regular bleeds, which fell every third Sunday, with the worst being an epidural bleed at 11 months old. Tracy never imagined Nicholas’ best birthday gift would be a port implanted on his first birthday. However, this truly was a blessing. Nicholas has now been on prophylaxis forÂ ten years and has transitioned from port to peripheral infusions.
Tracy, her husband, Lance, and Nicholas live in Suffolk, Virginia and their days are quite often spent at the baseball field. Baseball is Nicholas’ passion! “Our preparation for baseball games may be a little more involved than other parents, but when Nicholas steps on the field – he’s just like every other boy, which is what we’ve all alwaysÂ wanted for him.”
Tracy and Lance have been very involved with HFA; Tracy has served on HFA’s Board of Directors for eight years, and was recently elected the Board President at the Annual Symposium in March. Lance has been a core volunteer with HFA’sÂ Dads in Action program for five years. When Tracy isn’t volunteering with HFA or cheering Nicholas at the baseball field, she works as a Trust and Estate Paralegal for the law firm of Pender & Coward, P.C.
Destinee and her husband Ken were told to expect twins fifteen years ago when they were thinking about starting a family. Since Destinee is a third generation carrier of severe hemophilia, they were relieved when they found out they were expecting girls as twins.Â
Destinee learned early on in motherhood what advocating meant for her children and how to act on her instincts. Her daughter Morgan was a preemie weighing just 4.8 pounds and was born a fighter, overcoming many challenges. After twenty-one days in intensive care due to three holes in her heart, she was finally able to join her identical twin sister, Madison, and her parents at home in Southern New Hampshire. Watching Morgan struggle to gain weight and miss average benchmarks compared to her sister caused red flags and required early intervention.
After Morgan experienced a year of unexplained excessive bruising and prolonged oozing from minor scrapes, Destinee went with her gut instincts and reached out to the HTC at Children’s Hospital in Boston. Although it was a frequent concern that Destinee brought up at well baby office visits, the pediatrician had repeatedly dismissed a possible blood disorder. A shock to almost everyone, Morgan’s factor levels came back as <1% VIII. The months to follow were filled with several hemophilia office visits, blood tests, high emotions and a lot of confusion. “Thank goodness the cardiologists at Children’s Hospital made a collective decision during that first year not to do open heart surgery. Looking back that may have saved Morgan’s life,” Destinee reflects.
Being a first time mother with twins left little time to wallow in despair over yet another health challenge. With the help of a port-a-cath and a wonderful infusion nurse, learning to manage Morgan’s hemophilia became just another part of parenthood. Eventually a study was done by the hematologists at the HTC attempting to explain how and why one identical twin girl had hemophilia and the other didn’t. The study, “Female monozygotic twins discordant for hemophilia A due to nonrandom X-chromosome inactivation,” was published in the New England Journal of Medicine.
Destinee shares that “These days it’s more about embracing the moment, trying to balance what comes along and always trusting your instincts. Raising teenage girls, dealing with sibling issues and trying to foster their individuality, in many ways, makes hemophilia a day at the beach.” After several emotionally draining years due to a slew of financial insecurities and Morgan’s diagnosis of Aspergers, an Autism Spectrum disorder, Destinee decided to rethink her personal values and left her part time job of seven years as a dental assistant. Having more flexibility to be there for her family’s growing needs, becoming more involved with hemophilia advocacy and turning her passion for cookie decorating into a small home-based business is front and center now. Since the initial hemophilia diagnosis came in 2000, prior to the onset of social media, one thing that has remained constant and continues to grow is the support and camaraderie felt from this close-knit community on a local, national and now worldwide level. Destinee is very grateful for the rapidly growing awareness movement for girls with bleeding disorders as they face a different set of challenges than boys do and hopes her stories may help someone else feel less like a square peg.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals’ experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.