Friday Free for All

Posted on | February 11, 2011 | 8 Comments

I received an email asking if I was still posting other people’s words on Friday. The short answer is yes.  If you have something to say, email me. I will post them as they come in. Below is the email I received this week. I am sending hugs to you, my dear. You know who you are.

My son M’s favorite color is orange. His favorite number is six and his favorite song is “Farmer and the Dell,” which he always seems to sing his own version of.

M is 65th percentile for weight and 50th percentile for height.  He has beautiful brown eyes and a button nose that he scrunches when he is mad. He is stubborn as an ox and is continually guilty of hiding matchboxes and batman figurines under his pillow at bed time.

He loves his older brother more then he loves his blue hippo that he carries everywhere and calls his “baby” and would go to the end of the earth to keep J happy.  Even at the delicate age of 3, M knows the true meaning of siblings.

Two days before Christmas, we found out that M has a genetic condition called Familial Mediterranean Fever and I am so angry that I could explode.

I am angry that he is sick. I am angry that he will be medicated his entire life. I am angry that at any point, his symptoms may get worse. I am angry that he has been poked and prodded for three years while we were told along that “he is in daycare and is sick from that” or “he has an older brother and that’s why he keeps getting sick.” I am angry that my husband and son now also need to get tested.  I am angry that I have to crush his medication like a drug dealer and secretly slip it into his yogurt drink every morning.  I am angry that there is no cure, only treatment that may or may not work. I am angry that my husband blames himself because of his genes. I am angry that for the rest of his life, he will have to be monitored and watched and continue to see his doctors. I could go on for days….

But most of all, I am angry that I can’t save him.  I can’t stop this condition that has already altered our lives. As a mother, I have always felt that part of my role was to help my boys, to fix whatever was broken and heal any wounds they have. To protect them closely as children and from afar as they grow into young men. I take great pride in being able to “read” my children and know when they need me and when they need me to back off.  And right now, M needs me more then ever and he is too young to know…And I am there for him every step of the way….But I also can’t see through my own anger to know how to help myself….And I am scared to death of failing him….


8 Responses to “Friday Free for All”

  1. Shelley
    February 11th, 2011 @ 12:42 pm

    Dear woman. I am so sorry that you are dealing with all of this anger and sickness. My daughter has some sort of lung issue where she gets sick every few months which causes high (105+) fevers, shortness of breath, rapid breathing, shallow breathing, intense coughing, irritability (due to lack of oxygen), and various other things. I get so angry that her medications only help her but do not treat or cure the problem. I am angry that I cannot help her to clear her lungs. I am angry that I have to take her to the doctor every week when she gets these flare-ups. I am angry, that at the age of 3, she often asks me to use her “cahaler” aka inhaler.

    The best thing you can do is take care of that sweet, sweet boy and his brother. You are doing the best you can with what you’ve got.

  2. Bee
    February 11th, 2011 @ 12:43 pm

    My heart goes out to you.

  3. Jean
    February 11th, 2011 @ 1:26 pm

    Dear “M’s Mom”,

    I am so sorry for everything that you are going through. I hope you feel the arms of all of the fellow-moms who read this — wrapped around you and holding you up every step of the way on this challenging journey.

  4. Joanna
    February 11th, 2011 @ 1:51 pm

    So sorry you are going through this. Prayers for you and your sweet boy.

  5. Mrs. MidAtlantic
    February 11th, 2011 @ 4:07 pm

    This is heartbreaking. I can’t imagine how it must feel to learn such devastating news. I hope that you were able to release some anger through this post.

  6. KLZ
    February 11th, 2011 @ 4:26 pm

    You will not fail him. You have always been his advocate. That right there is not failing. Fighting for him is your job. And you’re doing it.

    Rage on. You get that right. But keep fighting.

  7. Mom on a Line
    February 11th, 2011 @ 7:30 pm

    Dear M’s Mom,

    I hope writing this post helps you release some of your anger. It always helps me to write these feelings out. Hitting “publish” usually helps me to move on. I don’t know exactly what you are going through, but I face the daunting task of advocating for me daughter and keeping her alive through several uncureable, life-threatening conditions (in the case of my daughter, congenital heart defects, pulmonary hypertension, and velocardio facial syndrome). It is not easy. It is not fun. It is often very lonely. But, it has helped me to learn what is most important in life–my family and spending time with them. For that, I am grateful. Keeping you, M, and your entire family in my thoughts.

  8. kim
    February 16th, 2011 @ 10:19 pm

    you sound like an amazing advocate for your sons. What a wonderful gift. You will teach them to press on, to believe in themselves, to go with their gut. When my youngest was sick and we didn’t know what was wrong, I remember how awful that was. Once we knew I felt like I could fight it. I had something to attack. Something to do something about. I hope you do, too. Thinking of you.

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