Social Gatherings

For a rare occasion, my husband and I went out for an evening with friends for a potluck dinner at their house. I can easily decline these types of invitations because I value my sleep and children wake up the same time in the morning regardless of when they go to bed it seems. But I have to admit, I am surprised my husband said he wanted to go and for that reason I jumped on it because I wanted to go and I can make up the sleep. And it came down to the day of the dinner and he still wanted to go! -so we went. It was a nice night- Tom admired the couple's garage doors and stain color and I was fascinated at how clean and well decorated the house was and how my friend (a mom, too) was like a superwoman with house projects of all gender types!
When the food was set up, I got Tom a plate so as to get him out of his conversation and over to the table to eat, and I ended up taking a modest amount of food for him and I, and subsequently he let me know I underfed him. I regret to say that I underfed myself and the food was good. Tom's word of advise is "that's why you never go first". I didn't want to take a lot of food at risk of being a pig and not taking a proportionate amount of food, but I noticed everyone else did not exercise such restraint. Damn it! If anyone knows me, you will know I love to eat and I dream of food and enjoy food and look forward to food. Especially when I get to try new things that someone else made. Oh well, I know for next time...
The same thing is true in a restaurant - if you don't know if your party is an appetizer-and-alcohol-ordering group or they are a strictly-entree-eating group, you need to defer your ordering until one of the "masters" of the group goes so you know what to do. Tough times, I tell you.

The other thing about meeting other people in this gathering is that with men apparently the first and major question you ask them is "what do you do?". And for my sweet, darling husband, he is not working now because he is awaiting the transplant. So he asked me in the car on the way there what he should tell them. So I said either tell them the truth or be vague. His point about the truth was that if you tell the truth you have to tell the whole truth and then you get into a long-winded account that will bring the whole party down to a serious, sad place and no one wants to do that. What I usually tell people at work or elsewhere when they ask me about my husband is that he is not working because we just moved back from Tennessee and I found a job sooner than he did. So inevitable and as predicted, pretty much everyone ask him what he does and where he works - our situation inspires questions, really - why did you move back to NJ after moving south for one year? are you looking for a job? Especially in my husbands profession people seemed to be a bit more inquisitive. But he handled himself wonderfully as he always does - he is a humorous, charismatic, energetic person and it seems that when you joke around it lets you evade things, change subjects easily and distract attention away from yourself. What a skill!
You don't realize how many times you would end up telling people you have an illness in this situation because it is impossible not to come up- you would literally end up telling everyone you met. When your health affects your job - it consumes your life because we work for money and for purpose and you need money to live and purpose for fulfillment. It gets exhausting telling everyone and I now understand that- you don't want to bring the conversation down everywhere you go and people don't really know what to say if you tell them you have cancer because it sucks and they didn't expect to hear that. Thought this is all true, I don't believe you should let it keep you from being social and I am glad my hubby did not last night.

Childhood illness

So the other day I called my OB/GYN to inquire about getting my tubes tied. This past week we were threatened with the possibility that our baby boy had what would be a long term health problem and, though it was not the worst case scenario, I realized that I didn't want to handle anything worse and therefore, I didn't want any more kids to take a chance on. We thought Marc had a type of hemolytic anemia for which the treatment used to be removing the spleen. It was painful to imagine my baby on a surgical table, it was even mildly painful to see his sweet little fat arm have blood drawn from it several times. He had a very low hemoglobin and hematocrit, which are indicators of many types of anemia. We all assumed that it was a hemolytic anemia because of a family history of it, but we were fortunate enough to get Marc to a pediatric hematologist very quickly to get more blood tests done that within a weeks time my mind went from anticipating having my son's spleen removed, and then living with the fear of having a child with no spleen to having what seems to be a normal child with a transient anemia that happens in babies who have had recent back-to-back viruses. Nothing is truly definitive at this point, but we are confident, I suppose, that he does not have the hemolytic anemia we suspected. My poor baby.
You want so bad for your kids to have an easy life and to have no heartache, no trauma, and very little negative stress. I know this is not possible, but I guess it is a parent's hope, and mistakenly a parent's expectation or presumed guarantee. Nothing is guaranteed and I know that. But I sure am happy that I don't have to worry about my baby right now because my husband is enough.
At first I blamed myself when after the initial blood work we thought it was an iron-deficiency anemia which is so common in children. Then,, my husband blamed himself for passing him a possibly hereditary anemia when that is what we thought it was. The blame is not necessary or helpful but I guess it is there because we as parents never wish any hardship on our child and if we blame ourselves, maybe we are trying to take some of that away. Stupid, futile, but impossible to not grieve or feel this way if something happens to your child.
All these experiences, though they may not cause a long term impact are there to remind you and teach you something.

How it feels to walk

One of my patients this week was passing me in the hallway and asked, "what is it like to walk?". I stopped and had to think for a moment to find the response I wanted to say. I was thinking about what it felt like to walk, and the only word that came through my mind to express that feeling was freedom. But what I actually said to the woman was the truth and that was, "I don't really think about it." Our legs carry us wherever we want to go at the demand of our mind and there is little conscious thought that goes into walking for a person who has little difficulty walking. She told me she hasn't walked in 27 years and she is not able to. I looked at her and told her that I was sorry she is not able to walk but there are many things she can still do and to remember them. I reminded her that we take for granted the things we can do, like me with walking, and maybe her with her cognition or dexterity. It is also important and humbling to remember that there is always someone worse off than us.
The woman took me by surprise a bit with her question, but it was a wonderful reminder of how able I am and that nothing is entitled to me or guaranteed. She has a complicated medical history that has left her wheelchair bound for at least 20 years, but I'm sure she didn't expect that nor wish that...
so try to remember "how it feels to walk"...