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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

Today is a day for celebrating grandparents, our experienced mentors in this journey of parenting.  Our Infusing Love mom bloggers share what their parents or grandparents have meant to them and how they’ve offered support when times get tough living with a bleeding disorder. 

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Growing up, celebrating Grandparents Day was just as big as Mother’s Day or Father’s Day because my grandparents were whom I lived with as a child and who raised me for the majority of my childhood.

Sonji_grandparentsWhen I think about the persons and experiences that influenced who I am as a mother, I think often of my Grandma Nora. She was the epitome of a “tough old broad” – she had a no nonsense attitude toward the things in life that must be done and had high expectations for the people that surrounded her. She didn’t expect perfection of things like a perfect attitude, a perfectly cleaned room, or perfect grades, but she expected and demanded your perfect attempt to do your best, to be respectful of others and to be a practical and dependable person. She loved her family and friends with all her being, and would do anything in her power to protect and defend them.

Grandma Nora passed away when I was 14 and even though it was another twelve years would before I become a mother, her influence shows in how I parent my children. We didn’t talk of hemophilia in my childhood because there was no family history prior to Thomas’s diagnosis, but I know precisely what advice Grandma Nora would given me: “Take care of him the best way you know how. And if you don’t know how, find out how.” I’ve tried to do that and like I’ve always wanted to do, hope I’ve made her proud.”

 –-Sonji lives with her husband, Nathan, and three children Nora (12), Thomas, (11), & Natalie (8) in Colorado.

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My parents have taught me that being a mom means being there and supporting your children even when you disagree with their decision. I remember entering young adulthood and I started making life decisions I thought was best for me, my parents would Lovee_grandparentsplead and beg me to take their advice. Being determined, stubborn and thinking I knew best, of course, went against their advice. Most of the time they were right, but they never said, “I told you so.” They supported me in my decisions hoping for the best.

When it turned out I should have listened to them, they still supported me in getting through whatever negative outcomes with non-judgmental love and support. As my own children are getting ready to start making life decisions, I just pray I can do the same. Thank you, Mommy, for always being by my side even when you wanted to kill me! I love you and appreciate you!”

–Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (15), Marques (11), Laithan and Layla (4.)

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It was actually my father that taught me to always say, “I love you” at the end of a conversation to a loved one. It was his family’s style to do this. My mother was always a bit more reticent and her mother was too. Once in a while you’d hear it but usually it was a “You too!”

Of course they’ve loved just as much but the words didn’t come as easily.Dad passed suddenly in 2004. In less than 24 hours he KImberly_grandparents daywas gone.Benny was two and I was pregnant with my second child. It was a heartbreaking time and yet there was this one thing: The day before he passed he’d left me a voice message about coming to visit and his last words were, “Love you.” My husband and I talked about it a lot, certainly as a part of our grieving process, but it also centered us both.

Carrying this on was a way to honor him and there was no downside we could see.Over the years I’ve asked my kiddos several times if we say I love you too much. I’ve second-guessed myself wondering if it loses meaning with so much use. However, they’ve consistently said, “Well, you say it a lot but it’s okay. I kinda like it.” I think my Dad would like knowing that the tradition has continued.

–Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (12) and Johnny (9).

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kari_grandparent photo

To say that Scarlett’s grandparents play a major role in her bleeding disorder is an understatement.

Shortly after my daughter was diagnosed with Platelet Storage Pool Disorder my mom and step-dad made the decision to get an apartment down the street from us. Every year they spend less and less time at their home in Palm Desert and trade it in for accompanying me to doctor appointments and helping with Scarlett after school.

The amount of energy and patience it takes to deal with a bleeder is a lot to bear and I couldn’t imagine doing it alone; I give a standing ovation to those that do. I wrote a blog entitled, “It Takes a Village,” and it couldn’t be truer. There is an array of family members that play key roles in the raising of our children and I honestly can say that we couldn’t do it with out them. Our parents have stepped up to the plate and been there to support us in ways we never could’ve imagined. They’ve taught me to love and support unconditionally and to be the best Mom I can be. We are all made different and are unique in our own ways. Love your friends and family just the way they are and know that you can never change them.”

–Kari lives with her husband, Ryan, and two children Scarlett (6), and Walker (2), in California.

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My parents divorced when I was two. My father then passed away when I was 11 due to cancer. My mom was a single mom before she remarried when I was 16.

I learned from her how to be independent.I am also a single parent and I’ve learned that I can be strong enough to do things for Kelly_grandparent daymyself and provide for my son. I learned that no matter how tough things get, we always had each other. My mom has always been there to support me and also to listen when I needed it. I learned that material things aren’t important but time together is something that can never be replaced.

She taught me at a very young age how to take care of myself by learning to cook, do dishes, and laundry all by the time I was 9 years old. I learned to live off of a budget and only within my means. We didn’t have a lot but we made the best of what we had. Another thing I learned was to always have a strong faith and to say my prayers and that we would be taken care of and have food on the table. I also learned that music makes you feel better and you can dance in the living room and it will give you happiness. I have always known without a doubt how much I was loved.

One thing for sure is that my son knows that I will always encourage him, support him, and be there when he needs to talk and that I love him unconditionally.There is no greater lesson to learn than to always give and show love.

–Kelly lives in Mississippi with her son, Micah, (12).

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Emily_grandparensThere is a quote by C.S Lewis that says, “Children are not a distraction from more important work. They are the most important work.”Although I do not know if my mom has read this quote it perfectly describes what she has taught me.

To this day, even though I’m an adult, she still knows that her children are the most important work and that translates to her grandsons too. When I felt like I could not handle hemophilia or the everyday ups and downs of motherhood, she was always there and, I know will continue to be there. She made me realize at the end of the day that our family and our faith and trust in God is what makes the good and the tough days worthwhile.

–Emily lives with her husband, Geoff, and sons, Logan (2), and Ryan (infant), in Minnesota.

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Being raised by a single mother from the time I was eight, I witnessed first hand how important it was to provide a safe home for my children.

Despite having very little support from my biological father, her ability and strength to keep a roof over our head and food on the Destinee_grandparentstable has earned much gratitude and respect. Although there were no family vacations or expensive toys, we learned to appreciate the little things and how hard work pays off.

At a time when I was one of the very few kids with divorced parents in my school, I didn’t really understand how difficult things were for my mother or how much she had to do without.  She taught us to creatively make do and take care of the little we did have. Seeing her have to sacrifice her precious time for work definitely has and continues to reinforce how much she loved us and how blessed I am to be home for my family. I know she did what she had to because the alternative would have meant losing our home.Still to this day, I am astonished when I think about what she was able to accomplish on her own.”

Destinee lives in New Hampshire with her husband, Ken, and twin daughters, Madison and Morgan (14).

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Being a grandparent may be the only thing parents like more than being a parent. I grew up knowing my parents loved me immensely but seeing the love they have for my children and the joy their grandchildren bring them is almost overwhelming.

Tracy_grandparentsI like to think that giving my parents grandchildren is my way of thanking them for what they have given me and taught me.Among so many other things, my parents taught me balance. Their parenting styles were so different and yet they blended to make a beautiful combination. Mom was always available with a sympathetic, compassionate ear and dad was there with strong, solid advice (or kick in the butt)!

When you have a child with a bleeding disorder, I think balance is crucial.Possibly even more important than balance, my parents have always made me feel like I’m doing a great job as a mom. More often than not, there are days where as a mother, we feel like we’ve done more wrong than we’ve done right. My parents are always there to let me know I’m doing a great job.”

–Tracy, her husband Lance and son, Nick (11) live in Virginia

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Jen_grandparents

What I’ve learned from my parents that has helped me be a better parent…to love with all y our heart, to fight for what is right, to stand up for what you believe, to enjoy life, support each other and to laugh…even at the corny jokes.

–Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (19), Nora (12) and Jackson (5).

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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.

Samantha_grandparentsI 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 quickly hop on a plane to be there whenever I need her. She is someone I can always count on. I hope to be that same loving, reliable, and giving advocate my mother was to my children.

Thank you mom for being a great mother and an even better grandmother.

–Samantha lives in Texas with her husband, Alex, and boys, Adoniah (3) and Christian (almost 1 year old).

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My mother passed away when my first born son was only 5 weeks old. I didn’t have her around to help me figure out how to be a new mom, much less understand what hemophilia was all about. But the other mom I learned so much from was my mother-in-law, Ruby. There was a time we could not even be in the same room together, but when Julian, her first-born grandchild was born, everything changed.

I remember being in complete awe of my son. He was so beautiful! He looked perfect, so how in the world could something beCazandra_grandparents wrong with him? How would I ever know if he was having a bleed? The questions were almost too much to bear but what I remember was Ruby constantly asking, “When can I take him to the zoo?”She was not afraid of hemophilia. She didn’t know a thing about the bleeding disorder until Julian came along and for all the times I had fear and doubt, she came back with joy and certainty. She just wanted to love him and she did it like I’ve never seen anyone love before.

I miss her dearly and am so thankful that she loved Julian and my youngest, Caeleb, as long as she did.That’s what it all boils down to…love. With a chronic condition you often live for the next day or moment, never knowing what will happen. And as I have learned about hemophilia and inhibitors over the past 18 years I realize that every meeting I have attended, every presentation I have given, every doctor I have questioned and every night I have spent holding my child in crazy pain I realize that love is the root of everything I have done and continue to do.

Thank you, Ruby, for showing me the depth of how love can fill a life.

–Cazandra lives with her husband, Joe, and sons Julian(17), and Caeleb (8), in New Mexico.

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*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 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

 

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