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Mom’s Blog: Infusing Love

Monitoring Anxiety

December 4, 2013

I have struggled with anxiety for as long as I can remember.聽 It took me years before I realized what it was and that it was real.聽 My mother also lived with it, but our family did not realize it until after she passed away.聽 It is a condition that can be handled in many […]

Keeping Their Memory Alive: World AIDS Day

December 1, 2013

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

Changes in Latitude of My Attitude & Gratitude

November 27, 2013

I think Thanksgiving gets more hype than it should. It starts at an early age 鈥 we encourage preschoolers to make construction paper turkeys from their hands and write what they are thankful for on the 鈥渇eathers.鈥 Elementary and middle school students express their gratitude in the form of coat or canned food drives at […]

My Bags Are Packed

November 20, 2013

I鈥檝e been traveling more this past year than ever before.聽 It鈥檚 both a blessing and a curse each time I leave for a trip on my own without the rest of the family.聽 The anticipation of having some solitude and quiet time is fantastic. On the flip side, I鈥檓 a typical control-freak of a hemo […]

Drowning Out the Noise of the Helicopter

November 13, 2013

Maybe I have become more sensitive. Maybe it would be better to say that I have become more aware. But I have noticed that people love to throw around the phrase 鈥渉elicopter parenting.鈥 I have seen it in parenting magazines, blogs, and even in a recent publication from our health insurance company. They all point […]

Humor in Your Hemophilia Bag

November 6, 2013

Most moms who have a child with a bleeding disorder know the ER drill. Despite being a veteran, I honestly forget every time how it works. Even in a metropolitan hospital that is affiliated with a hemophilia treatment center, a rare chronic condition like hemophilia is such a novelty with medical teams. We had what […]

M.O.M.

October 30, 2013

              Maryann May, M.O.M.:聽 Those are my credentials, M.O.M. I have been thinking about this for a while now. Over the past few years I have applied for jobs within our hemophilia community and it always seems that the person who gets the job has letters after their name. […]

Infusing Love: The Gasp Factor

October 23, 2013

We are doing it. We are signing our son with severe hemophilia up for basketball. So why do I feel so weird about it? We have full support from our HTC for him to play and for letting him be overall active. We are a huge sports family; we especially love basketball. Our older girls […]

Infusing Love: Standing Up (In a Wheelchair) to Bullying

October 16, 2013

Thomas’s first day of third grade was spent in a wheelchair, thanks to an ankle bleed. It certainly wasn’t the first time he had to attend school in the ‘chair,’ but I hated that it had to fall on the first day of school. We’ve always been very open about hemophilia – in first grade […]

The Elephant in the Room

October 9, 2013

By Kimberly Haugstad Benny had those dramatic finger print bruises that a lot of babies with severe hemophilia get. 聽Moms know the ones: thumb prints in front on each side in middle of ribs, fingerprints in back where you leverage his weight as you pick him up, bruises all over the body.聽 I remember agonizing […]

Infusing Love: The Bullies Won the Battle; Not the War

October 2, 2013

When we send our children off to school, we trust that they will be in the good hands of school staff to keep them safe 鈥 both physically and emotionally.聽 But what happens in the hallways at the lockers or on the playground at recess, when school staff is out of sight or not around […]

Infusing Love: Keeping “Watch”

September 25, 2013

We were at the park on one of the few sunny days that seem to permeate a cloudy, dreary month of June in Minnesota when I heard a women commenting about the 鈥渨atch鈥 on my son鈥檚 arm. 聽聽I looked down at Logan鈥檚 wrist, and felt comforted seeing his medical alert bracelet firmly in place, as […]

Infusing Love: Prepared for Anything

September 18, 2013

Being prepared took on a new meaning after having Max. It’s frightening and frustrating to know your child is hurt, but the key is to remain calm. Whether you’re on a trip or stranded in your own home, it never solves anything to panic. For me, the hardest part of adjusting to hemophilia was what […]

Guilty As Charged

September 11, 2013

Snakes can be poisonous. I have tried desperately to avoid them since I was about eight years old and was innocently climbing a tree and one slithered up next to me. 聽I don’t always succeed. Guilt is also poisonous. 聽I have tried desperately to avoid it since Thomas was born. I don’t always succeed. This […]

We’re All In This Together

September 4, 2013

聽By Sonji Wilkes I never could have imagined that hearing the words, 鈥淭homas has severe hemophilia,鈥 would equate to being thrust into a world of inspirational people and unexpected acts of kindness.聽 When Thomas was diagnosed and the doctor asked, 鈥淒o you have a good insurance plan?鈥 my mind immediately focused on the challenges we […]

Infusing Love: Mom: On My Nerves, But Always Has My Back

August 28, 2013

One of the ways many moms have learned the most about raising a child with hemophilia is by talking with our community鈥檚 鈥淏lood Brothers,鈥 the guys who have grown up and moved away from home, whether they be in college or have grandchildren of their own.聽 These men are able to give it straight about […]

Infusing Love: The ABC鈥檚 of Hemophilia

August 21, 2013

My son, Jackson, will enter kindergarten this fall. Some parents are happy for this new journey and some are dreading it; either they aren鈥檛 ready for their child to grow up or their child has a chronic illness and they are fearful of the unknown. I鈥檓 a mix of all of the above. Jackson is […]

Generosity Reality Check

August 14, 2013

By Kimberly Haugstad Last month, we spent the July 4th holiday at a festival on the Mississippi River about three hours from home. We packed for the trip with factor, snacks, tissues, and a pillow in the car.聽 Our plan was to take a dinner cruise on a paddleboat and watch the fireworks from the […]

Chocolate and Vanilla: Two Brothers鈥o Different

August 7, 2013

By Cazandra Campos-MacDonald One thing I鈥檝e learned is that right when I think I’ve got hemophilia all figured out, something comes along that blows my perception and understanding right out of the water.聽 I鈥檝e learned that you never know when your experience will ring true with someone else and make them feel less alone.聽 That […]

The Fighter

July 31, 2013

By Sonji Wilkes Several summers ago, I signed the kids up for swim lessons to help keep them busy during summer break. A couple of years later, after once-a-week, year-round lessons, they had progressed to a point where I was brave enough to sign them up for a local swim team.聽 I was thrilled; they […]

As I See Him

July 24, 2013

By: Emily Boyer It has been a long day; an immeasurably long day. We spent it at the Hemophilia Treatment Center (HTC) in an attempt to rid my little one鈥檚 body of a persistent inhibitor. It was long. I am tired. My house is a mess 鈥 I do not remember the last time my […]

Up, Up, and Away!!!

July 17, 2013

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

Self Reliance To the 鈥淢ax鈥

July 10, 2013

By:聽 Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence. 聽He was 6 the first time he self-infused. 聽He did it at our chapter鈥檚 family camp with the guidance of some amazing older mentors. 聽In those days things weren’t nearly as organized as they are now; no gaggle […]

The Red, White & Blue Of Hemophilia Independence

July 3, 2013

As we celebrate America鈥檚 Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders.聽 They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]

Adding More Mommy Friends to the Playgroup

June 26, 2013

When my oldest was first born, I was part of a weekly playgroup; a group of five to seven moms that would sit around a plate of cut-up vegetables and lemonade.聽 Through a fog of sleep deprivation, we exchanged stories of introducing our babies to solid food and comparing which brand of diapers worked best.聽 […]

Mommy, I Think You Might Need RICE for That

June 19, 2013

                I am notoriously klutzy. I always have been. My father used to joke that he should have named me “Grace” because I managed to spill a drink every Sunday at dinner. When I was a kid, I would walk into walls, and growing up in the South, […]

Superhero D.A.D: Delightfully Awesome Dude

June 12, 2013

On my husband鈥檚 Twitter profile, he describes himself as 鈥淔ather, Entrepreneur, Righteous Dude, Caped Crusader Fighting the Evil Private Health Insurance Empire.鈥澛 I鈥檇 testify those all true assessments of him.聽 He鈥檚 a pretty good guy. I think most fathers in the bleeding disorders community are.聽 They fight for justice for their kids just as hard […]

Your Choice. Your Voice.

June 5, 2013

  Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment […]

Prior Planning Prevents Persistent Problems

May 29, 2013

A couple of years ago, we decided on a whim to take a drive to the top of Pikes Peak on Labor Day weekend.聽 Standing at 14,115 feet, it鈥檚 one of Colorado鈥檚 highest mountain peaks and in July 1893, Katherine Lee Bates wrote the song “America the Beautiful鈥 after admiring the view from the summit.聽 […]

Taking Care of Me

May 22, 2013

Denial is a funny thing. There were several signs that indicated I needed to take some action about changing my habits and improving my overall health. 聽I chose to ignore most of those signs, giving myself excuse after excuse: I just don’t have time to exercise; there was a vegetable on my plate at dinner, […]


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