A Letter to My Son and Daughter

Letter to Owen and Hannah,

Two days ago I found out you both have Cowden Syndrome. The sole thought running through my mind until today was, "it's my fault." Genetically speaking, it is my fault. At conception your PTEN gene came from me. I have a deletion in the gene and therefore have problems in regard to benign and malignant tumor formation. I have asked myself over and again whether I did the right thing in bringing you into this world.

At the time your dad and I were trying to conceive you, we did not realize I had Cowden Syndrome. Cowden Syndrome may have come through your great-grandfather's family or it may be a spontaneous mutation beginning with me. There was no reason to believe you would have this condition at the time you were conceived. I questioned even though there was no evidence. I constantly question everything. Ultimately I did not put a lot of thought into your conception because I wanted to think positively. I wanted to believe this was an environmental problem. Hannah, when you were two, we learned it was genetic.

At the time I questioned because from the first ultrasound onward, your heads were much larger than the heads of "normal" babies. I put my fears aside and enjoyed you for you. Hannah, I believed your speech issues were related to the tonsillectomy when we almost lost you. Until a few weeks before learning the genetic testing results, I continued believing this in spite of a physician placing you on the pervasive developmental disorder spectrum. I knew PTEN mutations and PDD were linked but refused to believe you were affected. I did not realize 1 in 5 people with the mutation have some form of autism/PDD.

A few weeks ago, Hannah, you had an accident when we were outside. We have undergone a difficult period in potty training you. I had no insight into why until I accepted your being one of the twenty percent affected by autism. I saw in you myself at your age. I would not tell an adult when I needed to use the restroom because I did not want to bother them. Ultimately I would tell but not until it hurt me. I thought it was more of a bother to let them know. I told you to always tell an adult because we are here to help you. I could see from your face that I reached you when I said that. You gave me a hug and asked, "like you, mommy?" We can communicate but it takes more work. I am willing to do the work.

Daddy isn't ready to accept the autism diagnosis. It doesn't mean he loves you any less. Ultimately he will come around. I am impressed at how well he has accepted the Cowden Syndrome diagnosis. Daddy may not understand a few things you do and I may be slow myself sometimes. It doesn't mean we love you any less. Your thoughts are above ours. Every now and again I catch a peek and can relate. These moments are becoming more often with time.

Owen, you had speech delays as well. I suppose this is why I thought Hannah would grow out of the problem. You were in speech therapy for two years and no longer need it. Owen, you are so much like me. I did not need speech but I worried constantly over what people thought of me. It continues to be a struggle and will likely be one you face your whole life. It seems odd to cry over this part of the PTEN problem rather than the fear of cancer but this is the most painful part. I do not know how to help you with this as I continue to learn myself.

Owen, last night I gave you a bath and you had a bruise on your arm. I asked what caused it and you said, "I don't know, I just get a lot of bruises" and giggled. It took everything I could to keep from crying. I am the same way. Our big heads from the PTEN mutation are hard on balance. I said something to you but did not tell you about what is going on. Neither you nor your sister is old enough to understand and you do not need to feel any more different from others than you already do. When the time is right, I will tell you what you need to know. Even though you do not know details, you said something light years ahead of your time. Owen, you said you like yourself and you don't want to be anyone else. I know your feelings about this may change at times but I will be here to put you back on track. It may be difficult to believe but even if everything were normal your feelings about yourself will change sometimes. Never dislike yourself for what others think.

If someone does not like you, avoid them. In avoiding, understand they do not experience life in the same way you do. Be aware some people will take advantage of your sweet nature. Many people will not understand how you express yourself. Be patient with them because they do not know better. I love when we three are home alone and there are no pretenses. I have seen you two for who you are and it is beautiful. Do not let anyone convince you of anything different. It truly is what you think that counts.

The physical health problems remain in the air at this point. At this time you will visit Little Rock at least once a year for exams. I have walked the physical health problems road since the hemangioma at age six and the first dysgerminoma at age nine. I have undergone 24 operations with more to come, three cancer diagnoses and the third was two years ago. The geneticist assured me I am atypical with having so many problems. Textbook Cowden's he said. I pray you are not a textbook case like me. We will keep your appointments and watch you for these problems. We will take life one day at a time. We are a family.

4/3/10

Today was five days since learning of your diagnosis. It was the first day more than an hour passed when I did not remember my passing on the PTEN mutation to you. As fate would have it, Hannah, I looked at your hand when you asked me to hold it during the time it escaped my mind. I saw a tell-tale flat, white bump like the many I have on my body. Because I had a migraine and already told you my head hurt, I put it down when the tears came. I will not let you have a mother who falls to pieces in front of you. Your grandma was strong for me but I will be stronger for you. I cannot change anything and would not. Perhaps if I had known about the mutation and the serious health implications the situation would be different. We cannot live in the past. I am grateful for you, my two amazing blessings. No matter what I am blessed you are a part of my life. No matter what you are blessed to have life. Today I made the decision to write about my experiences for you in case my life ends and you experience problems from the mutation. It is tempting to only think positive and assume I will be here but reality tells me this may not be the case. I would not be able to stand it if something happens and I could have provided you with more.

So I end this letter. I have chosen to share it with others not as a sad situation but as an inspiring one. Those I meet online who have Cowden Syndrome often read my articles on this site. This condition is incredibly rare, scary, and those who have it need to gather to learn more from each other.

What I write from this day forward will be between the three of us. I pray it will never need to be read and I will be here with you through the good and the bad. If I am not with you physically, please know I will always be with you in heart and you will have a path of guidance. I was alone in my battles because no one I knew had similar experiences. Owen, I am more grateful than ever that God answered my prayer in requesting you have a sibling. Hannah, I am glad Owen has you as a sibling. We begin this with a name, a course of action, a mom who is not physically adept at much but who has been down one of the rockiest Cowden Syndrome roads, and a dad who is a rock. We are blessed.