Finding Nemo

Recently someone I love found out their unborn baby has Down Syndrome.  She is young, has no other children and is surrounded by family who love her including parents who would do anything for her.  However, her doctors told her she had to option to terminate her pregnancy.  She told me that she did not feel like she had anyone who understood her situation.  Her friends either did not have children or had new born "perfect" babies.  She felt I understood better and could give her some advice.  We talked a lot about her life and what it would be like no matter what she decided.  But there was one message I wanted her to understand more than anything.  I told her that the only opinion that matters is hers and her husbands... maybe even only hers (even though he is one of the most amazing men I know).  I told her that at the end of the day when the work is done and she is exhausted, when the baby grows older and so does she, it will come down to two people, her and that baby. 

 

As I said, her parents are amazing and so is her brother.  So many people were already offering their help and support.  We talked about how wonderful that is and I believe everyone means what they say.  But I also told her that it fades.  Life goes on.  When you have a chronically ill child, people will do extraordinary things; plan benefits, donate money, deliver dinners to your door for 9 months, listen until their ears fall off, visit the hospital, pray... the list goes on and on.  However, at some point having a sick kid becomes life.  You stop living like you are in crisis and start living.  Medical supplies pile up in your closet like old shoes.  The people at the hospital know you and your kids by name (and some even know how you like your coffee).  Even more than that, doctors and nurses you have never met before say things like "oh, YOU are LillyAnna!"  Instead of playing house, your kids play sick babies and instead of pretending to put them to sleep they pretend their dolls just threw up five times.  At some point it ceases to seem odd that the valet drivers at the hospital know your name and car.  At some point, you don't even flinch then you hear your baby retching in the back seat.  You just calmly pull over and clean it up.  And at some point it all just becomes part of your routine.  People around you sense this and start to calm down too.  As it should be, eventually people will actually talk about themselves instead of only asking about the baby.  Eventually your life is your life and you live it.

But does that make it any less difficult?  Maybe a little but only a little.  And the part that gets easier is that you are not in crisis constantly.  It never gets easier to take care of a sick child.  It just simply wears you down.  And then it gets lonely.  I am only at the beginning of this journey compared to some people I know and already I can feel it happening.  I walked into our support group meeting the other night feeling very alone.  When it was my turn I talked about how it seems as if people are taking Lil's illness less seriously now that it is not so obvious.  Her lesions were so gruesome and terrible.  It was so in your face but now the lesions themselves look better but she is still suffering.  Granted, she is not suffering as much but now she is suffering and we can't tell why.  The medications she is on are scary; the side effects are serious.  She is not gaining weight and has not eaten in a week (except a few bites of pasta, a donut and maybe a few chocolate chips) and what she has eaten she throws up.  She is drinking so that is good and that is what is keeping us out of the hospital. 

I shall call her Priscilla and she shall be mine.

And life is happening.  Chris and I had to get a new car.  I made the plunge into the world of so called soccer moms and bought a minivan.  With our financial situation being what it is the van is old.  Don't get me wrong, I love it but it is old and has a lot of miles.  We bought it Monday and it has had to go in the shop twice this week which is a lot of running around and as moms know, your car almost becomes like your purse when you have little kids so it was a big disruption.  My father in law is having some health issues and his attitude is less than mature and helpful to say the least.  My husband who is usually my rock and is very close to his father is beside himself.  I had two cakes to do yesterday and did not even have the fun of decorating them well which is my joy these days (if you have not heard, I am in the cake business).  I took my mother in law to get some testing done at Temple which took all day but I was happy to do.  Antoinette, our four year old, is having gastro-intestinal issues and we are working on that.  She has constant abdominal pain and her weight gain is just barely sufficient.  They want to be more aggressive finding her diagnosis because she is LillyAnna's sister (has anyone read My Sister's Keeper?) Her twin brother, being the oldest and a caretaker, is beside himself with worry.  In a four year old that presents as less than desirable behavior and my heart is just breaking for him.  He told me he has two sisters to worry about now.  I told him that is our job.  You can imagine how much that helps.  The therapist at the hospital says time and attention from me will help and I know that is true.  Oh and I have to make a decision about taking a part time waitress job by the end of the weekend.  I loved working in restaurants but it just feels like the lid on the coffin of the life I used to live.  I know that is dramatic but I am in a dramatic mood.

After all of this the past two days, I came home and cleaned up the vomit from the middle of the night last night which by this point was dried and stuck to the crib, walls and rug.  (Don't think me disgusting, I just did not have time! and she did not sleep in it).  I put the twins to bed.  Then I soothed LillyAnna while she wretched and spit and waited to throw up for twenty minutes and cleaned up the vomit that finally came, then put her to sleep.  For the third night this week I ate dinner at ten pm. 

I am not trying to feel sorry for myself and (please believe me) this is not a call to arms.  Everyone we know and some people we do not know have done so much for us.  It is time for us to begin living our new life.  It is scary to not know what that life looks like but that is life. You just keep on swimming and that is exactly what I plan to do.