The Narcissist

Narcissism (n): A psychological condition characterized by self-preoccupation, lack of empathy, and unconscious deficits in self-esteem.

I can't hold back anymore and have to vent here for a second and explain a little on the previous posting and what we have to constantly deal with. Here's another part of our week... When we returned from vacation last week on Sunday, Anna and Abby became sick on Mon/Tues. Abby with a 24-hour stomach problem (which is probably what Lucas ended up with for a week+). Anna ended up with strep, ear infection, and somehow got bit by a tick giving her Lyme disease--all things no one wants a child to get, but very temporary and very quickly treatable with antibiotics. All the children have had strep this year (Anna has had it three times). Unfortunately these kids have been sick many times this year. I say this just to preface this story that the kids being sick for a day or two is a very common occurrence.

On Bran's birthday last week (the Tuesday after returning from vacation), he was supposed to get the kids and we were all meeting to celebrate his birthday. He told the kid's mother after saying he was sorry to hear that Anna was sick, that he shouldn't take her to dinner with the other two, and since she was was throwing up a few hours before with a fever, she also shouldn't be around Lucas. Keep in mind too, that the kids have never gone with their Dad for 3-hour dinner when they've been sick... not that he couldn't care for them, but why disrupt the child that isn't feeling well. And, would you send a kid to school around other otherwise "healthy" children with a fever or throwing up? Why would you ever have them go out in public at all, only to spread the bacteria or virus? Their mother wrote back in an email in direct response to Bran saying it wouldn't be a good idea to take Anna, "Good God Bran, when are you ever going to think about anyone but yourself and Lucas?!" How's that for one of the most narcissistic things you've ever heard? Yes, she actually put that in writing.

It should be said too that on Tuesdays, Bran has to relieve our nanny by 4:30 because she has early church, and I don't get home until 6, so Bran always has Lucas the Tuesdays when he has the kids (so it wasn't an option for him not to have Lucas that night).

Of course, Bran cares about his other children--but she would have stayed home anyway, and he has to protect Lucas who unfortunately does have special needs! As much as I'd love to say he is like other children, the reality is--he is not. A typical child gets sick, they get some antibiotics and they are running around the next day (FYI--Anna was just fine to fly with her mom to Disney World at 6 am the next morning...12 hours later; and by Wednesday evening Bran was informed that Anna's rash from the tick was almost gone and she now just had a "mild cold"). As we painfully learned this week... Lucas gets sick, we end up in the ER with "Priority Level 2" rush -- and a pediatrician, neurosurgeon, pulmonologist, and GI specialist all weighing in trying to figure out what is wrong because he is so complicated and so vulnerable. Not to mention putting him through additional radiation from a CT scan, x-rays, blood tests, and awful spinal taps just to get to the source. Not only does he have a weak immune system, we will also always have to worry about the shunt being infected -- he could SO easily end up with meningitis again, if any bacteria or virus AT ALL touches his shunt, which spans from his head into his abdomen (which is how he got it before--from the abdomen--and the bacteria hit the shunt tubing infecting his CSF). Meningitis is not only heart-wrenching to witness your baby in an induced coma, it comes with 6 weeks of ICU recovery, would require Lucas to have two shunt surgeries back-to-back, and it carries tremendous risk of additional brain damage, and even death.

It was a horrible and very scary week thinking that Lucas was going to need his shunt replaced, and it was a dose of reality that Lucas is still an at-risk, medically-fragile child. I've said it for months, that any run-of-the mill illness for a typical child means something entirely different for a micro-preemie with health issues. And it is our job to protect him! Bran and I will never apologize for taking all the steps necessary to keep him sheltered and safe from germs because of his fragile condition.

Here's a question... If you had one child stung by a bee, but another that was allergic to bees that would cause their esophagus to close up from a reaction--who who would you shield from the bee? I'm sure both, because you wouldn't want it to happen to either. But -- who would you protect more? Which child would you tackle to the ground in order to shield them from the bee? Does it mean you love or think of one child more than another? NO!! Bran does not love any of his children more than another (as the children's mother would love for those three innocent children to think)! The children are so loving and attached to Lucas, and have never shown even the slightest bit of jealousy. They certainly do not need their mother planting the seed that Lucas gets more attention, and it only hurts them to hear it. And as we've learned, she and their grandmother hold nothing back from them being in earshot of negative things they say about their father, Lucas, me, or other Stishers.

This is our life, and what comes from having a child born at one pound. To those friends and family close to us that have followed our emotional journey with Lucas, prayed for him, cried with us, and rejoiced with us... you get it. Unfortunately, I know there are some that don't. They think that being born premature means the child just "grows" in a box in the NICU with no concept of the what it does to a parent -- then they think they are released into the world when they are "done", and at that point are like any other child. They have no concept of the difficult, scary, heart-wrenching journey and the health issues that follow. They don't know what it feels like to only be able to sit next to your child in the hospital day-in and day-out... the guilt you feel seeing your child that could fit in the palm of your hand attached to needles in every extremity and feeling that you are responsible for his pain and not protecting him... the feeling of having your heart broken into pieces when a doctor asks you to sign a "do not resuscitate" order and what it feels like to have the decision laid at your feet (more than one time) that would end your child's life... or, to make the decision to keep going and gamble that your child may be in pain or severely disabled the rest of his life... to be pushed away from your son's bedside when his heart stops and he stops breathing while a team of doctors and nurses rush in to revive him while you stand watching... how devastating it is to be told your child is missing a significant portion of his brain and will never be "normal"... to watch your tiny baby suffer through 5 surgeries... the grief you feel when they are home as you try to grasp what his life may be like and letting go of your dreams of a healthy child, that they may never walk or talk.. and that health issues will forever follow this innocent child and that the world of medicine is now your life. <**But I should add... we also get to experience the indescribable feeling of JOY watching him smile, and overcome, and prove doctors wrong!> The result of all of this? We are fiercely protective!

We are absolutely grateful for Lucas and wouldn't trade anything in this world for him, but it doesn't take away from the fact that this can be extremely difficult at times. This is not a plea for sympathy or "woe is me" (as the children's mother has also said about Bran in relation to our year with Lucas -- to quote her exactly, "enough of this woe is Bran crap" when she learned he had a tiny child on life support laying in the NICU). Of course, this was said in the context of her worrying his birth would affect her child support check.

I want to be clear -- we feel just the opposite -- we have never wanted anyone to feel sorry for us through these postings (because we don't feel sorry for ourselves). Yes, it was a painful year... but I write these updates to tell his story as the events happens, for the people in our lives that care for him. Sympathy? NO! But empathy and compassion for this child--YES! We do expect that from any decent human being.

Enough ranting... I'm sure I've made my point and this posting is much longer than I intended. I have made a conscious effort not to taint Lucas' story with details about the kids' mother (because I could dedicate an entire site to things she has done). I always try to present our story in very real terms, but with a positive attitude. I try to limit negative details and haven't even shared some of the really gut-wrenching stuff that I could never bring myself to write about last year. However, I just can't hold back right now. I guess I shouldn't be surprised by anything anymore after she's taken the kid's pictures of Lucas (that they asked for and were so excited about), told a 4, 6, and 8 year old that their brother was blind, and told an elated Nicholas that Lucas wasn't his "real" brother the day he found out about him and excitedly wanted to call his Mom to share the good news (whose spirit was immediately crushed by his mother's response that afternoon).

They've actually gotten to the point now that these kids barely talk about Lucas in front of her because they've figured out that they can't... they have actually said to Bran that they are "scared to talk in front of mom or Gigi (grandmother) because they know they'll be mad." Recently we were all a football game for Nicholas and the girls went from being happy, singing, playing games in the car, arguing over who would push Lucas in the stroller... to scared little girls when they got with their mom, wouldn't leave her side, and would not acknowledge their father, brother, or grandparents for three hours, all of us standing just a few feet away. Anna actually looked frightened, as she timidly looked down at us often from across the field, unable to smile or say anything. They told Bran a couple days later that that they were scared to talk to us because they would be in trouble (its actually their grandmother that they fear more because she's so angry and negative). They've clearly communicated to the children through continuous actions that it is not "ok" with them to show love to their father, or me, or Lucas, or their grandparents. Both Abby and Anna said separately that they specifically asked mom to come see their brother, who told them, "NO." The kids have said on numerous occasions - Mom doesn't like (insert name), or Gigi doesn't like (insert name). Its so unfortunate, because they are the ones that suffer due to adults that should be able to put away anger, ugliness, and hostility for the good of the children. At our house we are always positive about the "other side" because it is what is best for them. They talk freely in front of us because they know they can. We will not be the ones that teach them to hate or disrespect others. These children are completely the opposite when they are with us... very loving, especially to Lucas, constantly at his side, and often fighting over him. When they came back from their vacation with their mother, the first words out of all three of them, was "How's Lucas?" with a lot of care and concern (they knew he had been sick, but wouldn't ask any questions on the phone while in front of their mom).

Its just sad... they love him immensly, are also very protective of him, and are so proud of him! You can see it very clearly in all the photos and videos.

"Our reputation is only what others "think" we are. Our character is what we do when we think no one is looking."