Why Hemophilia Makes me a Better Parent

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When my newborn baby was put into the Neonatal Intensive Care Unit (NICU) for a week, I was hit by a powerful force of immense strength and love I didn’t know I had.   My husband and I already were blessed with our firstborn son who did not have any health concerns.  While we love both of our children very much, it wasn’t until our second son was diagnosed with severe hemophilia that we really learned what being a parent meant. My husband, Alex, recalls that moment over a year ago and says, “After seeing Christian stuck with tons of needles while he was in NICU, I felt helpless that I couldn’t rescue him.” At that moment I felt the depth of a parent’s love.” Christian didn’t stop bleeding for days after circumcision and during those dark days of suffering and confusion, we came together as a team of hope for him.  My husband and I, despite being sleep deprived and scared for our son’s well-being, had to lean on each other and became a more unified family. We are better parents today Continue Reading

Caring for my “Bleeder”

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Dear Caregivers: Thank you very much for keeping a mindful watch on my baby yet allowing him (and myself) to socialize in "normal" settings.   Christian does attend the gym and church nursery regularly so I wanted to explain briefly what his bleeding disorder is all about.  Since my 20 month old "bleeder" is not entering into school, my intention is to keep this information brief and "to the point." Christian has severe hemophilia A, which is a chronic condition that does not "go away." What is severe hemophilia A? Hemophilia A is a deficiency in Factor VIII, which is a missing protein in the blood.  This inhibits the body's ability to clot properly. Below are some illustrations of Christian's response to a bleed vs. someone without a bleeding disorder. Click on picture for link to sites. Severity Hemophilia A Range Normal factor levels 50% – 150% Mild hemophilia 5% – 49% Moderate hemophilia 1%-5% **Severe Continue Reading

Mommy-dentity revealed . . .

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Last week I blogged about my "mommy-dentity crisis" and upon pondering that writing I had to follow up with some revelations I feel God has put on my heart.  You see, before I became a mom I based my sole worth and value on my career. I was very successful at fundraising as a Director of Development and I loved the field I worked very hard to get into.  After soul-searching I was certain that "this" (my career in nonprofits) was my sole purpose and mission in life. Then I had kids and all of that changed. My sole purpose and mission is not in my day job or even my new "job" as a stay-at-home-mom:  my purpose and mission is to receive God's love and AMAZING grace and pass that onto those around me.  You see God has been trying to teach me that I am worth so much more than my position at work: whether that is a Director of a nonprofit or Director of my home/children. God has been telling me over and over again and I am just now listening.  This is what He is saying. Samantha, Continue Reading

Uniquely Made, Uniquely Blessed

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This is what the idea of "Blessed Blood" is all about.  Our sons and daughters, and ourselves for that matter, are uniquely made and uniquely blessed.  We were all made differently for a purpose to fit into the Body of Christ in our own ways. Ours sons with hemophilia are not cursed with "bad blood" but instead are blessed.  How are they blessed? They are blessed to be alive.  They are gifts to this world.  Our sons are teachers, teaching us their strength and perseverance to live life to the fullest and conquering many struggles and obstacles that they were told would be a roadblock in their life.  I hear of so many inspiring stories of hemophiliac men like Vaughn Ripley and Barry Haarde.  http://www.vaughnripley.com/ These men have dodged any death sentence of HIV, Hepatitis C and hemophilia.  They not only overcome these conditions-they actually conquer them everyday on a road bike and staying healthy and strong.  These moms must be proud.  We should be proud of our sons. And our Continue Reading

HTC: Is it a matter of trust?

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This will probably be one of my most candid posts, yet.  So hang on tight! Are you with your HTC because you trust them?  How significant of a role is trust a deciding factor on where your HTC is (or if you attend one at all)? I was recently asked by a certain staff member from my HTC about my trust in the HTC. The question this person asked was in response to me asking questions.  This was the scenario: My son's dosage of Factor was changed and so I called to further understand why my son was going to need more Factor.  There was a long delay in getting a response so in the meanwhile I asked around from others in the hemophilia community (my pharmacist included) to get better understanding.  The answer seems that every HTC treats differently and some more aggressively with higher amount of Factor. OK, great so I finally get to speak with a staff member at my HTC and in response to my questions this person replies (without answering my concerns first) "Look, you come to Continue Reading

Happy Grandparent’s Day!

My mother raised me as a single mother until I was 12 years old. Throughout my childhood my mom worked very hard to provide for my 2 sisters and me. She taught me to be strong, confident and independent. I thank my mother for encouraging me to have a voice at a young age. I can recall my mother calling over the manager at a restaurant for a piece of glass found on a plate. I recall my mother having conferences with the teachers and being very involved with PTA and school organizations. I remember being embarrassed when my mother “spoke up” when something wasn't right in public. But now I am so thankful she has taught me to be an advocate for my child. By example she taught me to protect my children and to have confidence in following mother's intuition. My mother was always affectionate and loving and never cold. I hope to share the same selfless, sacrificial love to my children everyday. I always felt loved as a child. My mother doesn't live in Texas anymore with me but she will Continue Reading

Happy Birthday Mommy!

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Mom, I wanted to give you a special "shout out" for your birthday. I love you very much and my heart is always with you as I have your heart everywhere I go.  I am so thankful God put you into this world to do so many things for so many people.  The best gifts of showering us with your love is immeasurable in its reach.  You loved me and my sisters all so unconditionally, always showing us affection and warmth from the bottom of your heart.  On your birthday I hope you enjoy the beautiful green surroundings and breathe in love which we are sending to you.  No matter your distance, no matter the time, I love you.  You are an amazing, accomplished woman who has raised me to be confident, independent and educated.  You have raised me to be passionate and compassionate with others.  You have raised me with a love of Jesus and I only hope to pass on the same genuine love for Christ and my family as you have imparted on me. You are an even better grandmother than you realize and my Continue Reading

Can’t we all just get along, moms?

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Am I crazy or does entering into the world of motherhood also come with some war zones?  I remember when my firstborn was just a baby I quickly realize what a controversial topic breastfeeding was to other mothers.  It was very surprising.  I also quickly learned to stay quiet about any other parenting choices like co-sleeping and such, unless I truly felt safe to exchange my experiences and choices as a new mom.  It was very strange to me that what I thought was an innocent topic unleashed some mothers to be defensive and critical. Now with my 2nd baby, now 18 months old, I have already realized that you must proceed some conversations with other moms with caution.  I kind of understand being very passionate and defensive with your own parenting choices but we must remember to not push our decision on others and certainly not to judge if someone isn't doing it "our" way (which of course, in our mind is the "right" way). While some of you know or can assume I am a bit of a free Continue Reading