What Gives Me Strength

“Strength does not come from physical capacity. It comes from an indomitable will.”

~Mahatma Ghandi

While sharing my story of survival, I am often asked where I draw my strength.  A short time ago I shared with you what motivated me and today I would like to take a moment to open up about the roots of my own indomitable will.

Nineteen years ago a nurse handed me an 8 lb 10.4 oz squirming bundle that completely altered my world.  Most parents will tell you that all children change things but my oldest son really did alter my life.  Scott was born with Severe Hemophilia A (his blood did not clot).  The gift of this child determined that I would spend the majority of his early childhood by his side as a stay at home mom.  Scott would soon unveil ADHD, asthma, sleep apnea and a generalized seizure disorder; life was not easy for Scott.

Scott has shown me what it means to persevere even in is most difficult of moments and I am consistently amazed by his bravery.  While academics have proved to be a challenge for him, he is still pursuing his diploma and wowed us when he received his driver’s permit last week.  He is now seizure-free and eager to explore the world that he has been so protected from.

I know that I can meet my own personal goals and challenges just by reminding myself of all that my son has overcome and accomplished by his own indomitable will.

Scott is an incredible testimony for the strength of the human spirit and he shows us that no matter how great our obstacles are, they can be overcome.

One of my obstacles in the near future isn’t about my caloric intake or letting go of the foods I love, but it will be about letting go of my son and allowing him to step out into the world that I have spent his lifetime protecting him from.  This just may be my greatest challenge.

 

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5 thoughts on “What Gives Me Strength

  1. reading this gives me an inspiration to live…to fight the battle w/ hemophilia. four mos. ago my baby ethan was diagnosed with hemophilia,I don’t know about this condition,I was really shocked that this kind of condition exist. researching about hemophilia breaks my heart,I can’t bear the thought of what my baby can go through with hemophilia. just right before I read this blog,I am so depressed….I kept on asking God…why does He let my son to have this.Were living here in the Philippines and factor 8 is so expensive….Im full of fears…how can we provide ethan with his medical needs.Were living in the province and going to pedia hematologist will take 4 to 5 hours of driving,how can we afford factor 8 regularly for ethan’s needs. right now I’ searching for a mom who can share with me thoughts about raising a child with hemophilia.ethan is now 1 year old,I’m scared of how can I teach him to walk?does he really need a helmet?where can I find a helmet just right for him?can I afford it?elbow pads,knee pads….I don’t know where in the world I can have all the things that he need. we are just living in one room in our grandparents ancestral house for eleven years… my husband and I with our 10 year daughter lives here…now we have to rent an apartment so ethan could have a space for him to grow,putting safety things that a hemophiliac needs. Please if you could help me find an organization or someone who could help me with factor 8 and other things my son will need for his condition.And please share with me knowledge on how to raise my baby and help me to be strong for him and for my family. God bless you!!!! thank u very much!

  2. Charina,
    The birth of a child with Hemophilia can leave you feeling very overwhelmed and I am hoping that I can help you.
    Have you registered with HAPLOS (Hemophilia Association of the Philippines for Love and Service)? You may also wish to contact the National Hemophilia Foundation in the United States as they may know of additional resources in the Philippines or organizations that send anti-hemophilic factor to the Philippines. I am happy to help you seek resources.
    My son never wore a helmet, although we did have one. My goal was to treat him as close to normal as possible and for our family to exist as close to normal as possible; this was not easy to do in the toddler years. By the time my son was 1 years old, I was fortunate enough to be able to have a portacathode inserted into him where I was able to give him his shots at home to save me from a tremendous amount of driving but that is not an option for everyone.
    Your strength will come Charina. I believe that we are given surprises in life to give us courgage and strength rather than to challenge our courage and strength. The best advise that I can give you at this very moment is to be good to yourself while you are caring for your son. If you are exhausted and neglecting your own needs, it is hard to care for another.
    I am so glad that you found me, I am married to an American-born Filipino man (his parents are from the Philippines). : )
    Please email me at weight4us@comcast.net, I would love to share my knowledge and be a support for you on this journey.

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