Not for the Faint of Heart

Blogging for me has always been therapeutic. I love being able to write out things that are going on in my life and just leaving it all on the page. It helps me work through things good and bad. I work through my frustrations with my husband, kids, family, work. It helps me remember the funny things my kids do.

I haven't been blogging. I try and justify that it has mainly to do with being too busy. That is really just an excuse that I give you and that I give myself.

Here is what I realized about blogging. People read what I write. Not a lot of people. Some I know very well and others I don't really know at all. So when I am feeling things that I don't know how I feel about other people reading I have avoided blogging. Every time I sit down to write the same topic keeps me thinking that I really need to write things out but I don't.

This week I got a letter from the Shriner's Hospital in Philadelphia. It was a confirmation of our next follow up appointment for Logan. I never wrote about the first appointment. I never wrote about Logan's hand other than the day in the hospital when we first found out about. For the past five months I have been feeling and living all of these things but I haven't been able to write about it. I realized when I got the letter that I have felt so much that it has been so emotional but I haven't been able to write about it until now.

Logan is such a good joyful baby. He is so happy and rarely cries. He is a blessing to our lives and he has made me such a better mom. I would be lying if I said that it has been no big deal getting used to his hand being different. There isn't a day that goes by that someone doesn't stare or the inevitable question "what happened to his hand?" or "why do they think it happened?" The truth is we don't know, they don't know. People can't help but stare or ask questions. I don't know how I would have handled it either. It still hurts a little. I was at a birthday party for one of Emily's friends and all the mom's were oohing and ahhing. Logan is in a teething phase so a lot of times he will put his entire fist into his mouth and chew on it. One of the mom's wanted to get Logan out of the stroller and hold him. I didn't think twice about it and then she went to pick him up and he took his hand out of his mouth and I saw her face. It wasn't one of disgust or anything just a little surprised and then this look of sadness just for a second. The look of "oh, that is too bad" and then a look of happy resolve that it doesn't matter cause he will be just fine.

It has kind of been like that for me and Bret. Surprise and then a little sadness. It's almost like we have mourned what we thought perfection was. It makes me sad that Logan is different. Being a kid is tough. Being a kid that is different in anyway is tougher. I mourn the fact that I have to be the mom that pushes her kid to try harder, to not give up, to forget about the things he can't do very well and focus on the things that he can. To be the mom that can't protect her kid from the mean things other kids will say or do. That I can't stop other people from staring or asking questions. I don't know that questions are bad. It's just people's nature to ask.

My dad is in a wheelchair and my whole life people asked what happened or why he couldn't walk. The answer he always gave us and we always gave everyone else was "he was born that way". I HATE the fact that the only answer we have for Logan is the same thing.

I want to know why. I want to know what happened. For three blissful pregnancies I was naive. My pregnancies were easy and healthy. No complications. My husband is an OB so with his permission I never worried about caffeine, hot dogs, sushi, etc, etc. All those myths that people who are pregnant avoid "just in case" never phased me. I never worried at my sonograms cause I had faith that the baby was healthy and everything was fine. Now I worry that if we don't know what happened with Logan we can't be sure it wasn't something I did or that it might happen again. We can't be sure that I am not carrying some sort of strange genetic defect from my dad that causes this sort of thing.

My head on a normal day is more level headed and can talk myself out of these crazy thoughts but at least for once I can admit that I have thought them.

We went to our first Shriner's appointment back in April. It was much more emotional for me than I would have ever guessed. It was over whelming to say the least. We first met with a fellowship resident. He started with the questions. Everyone who said that it wasn't anything I did can tell the resident who asked the questions. They wanted to know every last detail about my pregnancy and the two before it. Questions about infection, bleeding, surgeries, etc, etc. Then they wanted to know about family history and our other two kids, etc, etc. We had x-rays taken when Logan was born so of course they reviewed those and looked over Logan carefully. Then the fellow said that he was going to discuss with his attending and that they would be back.
Mind you we were in a very small room and when the fellow returned so did five other people. There were two attendings, the fellow, a resident, a social worker, and an occupational therapist. The two attendings were the only ones to introduce themselves. The rest stood in the room and silently watch. The attendings looked over Logan and were pleased. They told Bret and I that Logan's hand was amazing. They said that with their experience they could already tell us that he was going to really be able to use his thumb and hand. They felt strongly that there was not really going to be a need for surgery or even a prosthetic. They said that some doctors would remove a toe and make a finger.


They also said that they would of course want to see him again and if he "needed" a finger for something they would be sure to give him one.

They also said they wanted to cut off the small nubbins.

Wait...you want to cut off his fingers?

The doctors then told me that they are not really fingers (the tiny little fingers that never really developed that he has on his hand) but what they call nubbins. They said that the because they have finger nails on them as his hand grows they tend to get infected. They also said that the largest one (which is located where a pinkie would normally be) gets in the way of his ability to grasp things.

Still to me I was a little horrified. It has taken me a while to get used to this idea which is good b/c this next apt will be to set everything up to take care of that.

The other part of the visit was really hard for me. They started to talk about self awareness, self esteem, dealing with other kids, etc. They talked about the resources they have to helping kids deal with this. They also talked about Bret and I dealing with it. It all felt so surreal. I mean here we are sitting in this little room with my baby and all these people talking about teasing and feelings and "dealing with things". I felt so uncomfortable and I am used to being around doctors.
They were so nice and it was really reassuring to have them talk about how much function Logan is going to have with his hand. At the same time my heart was wishing that it wasn't my baby that was going to have to live with this. Bret has been amazing through all of this. It helps that he is always willing to talk about things. After the appointment he knew I was overwhelmed. He cried with me and said it was Ok to be sad. He explained that the reason so many doctors came in was because a lot of times they learn by seeing. Every kid they see is different so the more they see the more than can learn. He also helped me see how great it was that the doctors were so confident that Logan is going to be awesome with his hand. They can tell from seeing other kids with similar hands what his function will be. Mostly just helps having someone who understands what it feels like and not making me feel silly for feeling what I feel. We talk about all the things he might struggle with and we talk about the fact that who knows what medicine and science will come up with in the years to come. Bret is also resolved that worrying about something like this happening again is not a reason to not have another baby. In fact he thinks it would be better for Logan to have a younger sibling so we don't baby him even more.

So there you have it. Logan is awesome and we adore him and we are thankful that he is so healthy. But we are still a little sad. It still stings just a little when things happen like the little girls at the BBQ today are looking at his hand and asking what happened. When everyone around you are telling you about someone they knew that had a hand or something just like it and how amazing it is that they can do everything just fine. When someone notices for the first time that his hand is different. Or when you watch your baby working so hard to get something into his mouth trying to use his hands when before with your other babies you never thought twice about it. Sometimes feelings are ugly. For me when I write about my feelings its like I am acknowledging them so that I can move forward from them. I am starting to think I'm getting there.

1 comment:

bugged out said...

Adriana, I admit I cried just a little too, after we left the hospital in Reading to go back to our motel room. But after the month you all spent in Kansas and the trip to Colorado, all I see is a "perfectly" happy and completely lovable grandbaby. Grandma