Monday, January 25, 2010


We have recently been dealing with a lot. My oldest son has an immune deficiency which can sit idly by for months on end and then rear its ugly head. For years we had been relatively lucky. This year though we've seen more infections, more illness and the toll it's taking on his sweet little body. He looks emaciated , each vertebrae and bone visible to the naked eye. Black circles encase his sunken eyes but his disposition is always the same. That of a sweet, old soul. He has the gentlest of spirits and a heart of gold.

Since October my poor little guy has been faced with H1N1 and many bouts of swollen tonsils. Kissing tonsils, so we've been told. A lovely name to describe something that can be extremely painful and may be creating an even greater problem, sleep apnea.

We are about to endure a sleep study, something my poor little boy is terrified of. He may be wise beyond his years but he still has the same fears of any normal seven year old. Anyway, the study will advise us what to do next, adenotonsillectomy or watchful waiting. If his numbers are moderate we've even been asked to take part in a NIH (National Institute of Health) research study which looks at the effects of sleep apnea on children. While the prospect of taking part in something so monumental is intriguing it is also anxiety provoking.

Luckily I have found that just when things start getting a little too crazy and I feel like running for the hills or a nice padded room I encounter someone or hear a story that manages to help me put things into perspective. A reality check if you will. Last week my husband told me of a woman in his office whose seven year old son has a rare form of anemia. He cannot make certain types of blood cells and requires weekly blood transfusions. His outlook is bleak. He is seven years old (the same age as my oldest son) and he is very aware that he will likely die. My heart breaks for this woman and her child. To face this harsh reality on a daily basis must be agonizing.

What I've come to realize is that our life is crazy. Our life is exhausting. Our life is filled with Dr. visits, breathing treatments, expensive tests and new diagnosis. But, our life is manageable and filled with possibilities. It's all about perspective.

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