Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, June 14, 2015

Words - announcement to the girls and first meeting with the specialist

Because of the history of my last pregnancy with Meagan, of course I have to re-visit the specialist OB again with this pregnancy.  I had my first appointment with them a little over a week ago.  I had mixed emotions about going back.  It was such a negative experience being in their office.  It always felt gloomy, sad, and unwelcoming.  Of course these feelings were exasperated by the fact that at least three of my visits were heavy conversations about terminating my pregnancy with Meagan due to her severe brain problems.  There was just no way I could have a great feeling about the office.  Going back was a whole different story.  Now that I have parented a special needs child for almost 4 years, and seeing what a joy she is in this world, it wasn't the gloom or sadness I felt as I walked back in the door.  It was anger! And definite feelings of pity - that they were missing out on the Meagan's of the world because they don't bother to look at the reality of a lot of situations.

To be fair, I realize these specialists deal with a lot of "doom and gloom" in general because women are there for that reason - there is "something" high risk about their pregnancies.  Whether it be "just" age, or fertility issues, or the multitude of illnesses or conditions that can occur in a baby, I'm sure they rarely see the completely "happy" situations.  However, despite all that, it still bothers me that they have this attitude because it's truly a choice.  They could have a more balanced view of things.  They could realize that even terminal babies have something to offer the parents and the world by honoring them and loving them - not advocating terminating them.  And they certainly have a choice to not offer full front in your face the inevitable "termination" option when something shows up "not normal" about a baby.  I think this is what stuck with me most during my pregnancy with Meagan - how walking in they had talked about finding out the gender of my baby, and once the severe hydro was seen, they immediately talked about terminating "it."  Again, I feel for their day to day situations they must deal with, but, I have come to the point through parenting Meagan when I have lived life not always being roses.... but guess what. It's still LIFE.

I made my way to the desk and checked in.  I decided from the get go that I would use my strengths to hopefully change or at least inspire some thought in my former doctors so perhaps someone down the road could have an easier time, or at least a feeling of support from the doctor whose patient was technically the unborn child.  Once called back, I was excited to see our little one on ultrasound again.  As soon as the picture came up on the screen, there he/she was.  Wiggling around, head, body, little arm and legs (although short at this point), and the clear umbilical cord that had formed and already nurturing the baby.  The tech was very nice and remembered me from Meagan - she asked if she could see her now.  I said of course! I showed her a few pictures of Meagan's birth, explained a little about her, and then showed her pictures of her now.  The tech thanked me for the update and said she always thought about us because she wondered what had happened to the baby she had scanned so many times almost 4 years ago.

After the ultrasound, I was ushered into the office of the doctor to discuss the plan for the pregnancy etc.  Basically, I knew it was going to be the doctor telling me all the tests they were going to do to make sure this baby was "perfect."  Barf.  As the doctor went through my file from Meagan, he detailed all of the things they had found wrong with her, the severity of the hydro, and after that I pretty much blanked him out and just sat there while he rattled off all the negative stuff....but then he said as he flipped through the last page "and it looks like it was a girl...."  I sat up in my chair and said "excuse me?"  He said "It was a girl."  I said "Actually she IS a girl... a little girl who is almost 4."  With no change in demeanor, he said "oh that's right, you had her."  At this point, I decided the special needs mama bear needed to just be present at each appointment because it was apparent even though she was here and alive and a joy, he could really care less.  When he asked about the testing, I simply said "Any testing that is not invasive to our baby, we are fine with.  We want baby to be as safe as possible until delivery."  He looked at me with a funny expression on his face and asked "Don't you want to know if there is a problem?" I answered "yes, but only to the point that helps us best prepare how to help the baby at birth, or make a birth plan according to the needs of the baby."  Again he looked taken aback and repeated Meagan's diagnoses. He said the most common forms of hydro were genetic (false) and that otherwise typically mothers cause the hydro due to being sick or having an infection (false again.)  At this point, I spoke up. I told him that I hoped just because he had an MD, he didnt' think he knew the first thing about hydro, or my daughter.  Or any other child with hydro for that matter.  I told him that he was wrong - if he would like a handout from our neurosurgeon on the actual facts of Hydro I would gladly drive to Children's and get him one for my next appointment, but that no, actually genetic causes are not number one, and that no, I didn't cause Meagan's hydro from having an infection.  He looked a little perturbed and asked me where I heard such a thing.  I told him from Meagan's neurosurgeon and her neurology team.  They had told me long ago based on her scans that they believe something happened in that first month of development that changed her brain and caused the hydro.  I also told him I would highly recommend any other parents that come through his office with this diagnosis be immediately sent to either our Neurosurgeon or our Neurologist for a consult since it was apparent he didn't know much of anything about the condition or how children with hydro actually lived.  I also suggested maybe in his free time he could go spend some time volunteering with FOCUS or another local group that works with special needs children so he could see that just because they aren't "perfect" according to his textbook, they are people with dignity, joy, and lots to offer the world - more than he could ever hope to do.

The remainder of the "meeting" went pretty quickly and he didn't offer any more "opinions" to me.  I think he got my point.  We set up the next few tests for this baby, and made my next appointment.  I told him that next time, I would bring Meagan in with me so he could see her face each time he had a patient with a hydro baby.  He said he was open to seeing her, and so I left with a handshake and a polite smile, thanked him for his time again, and told him that I was glad he would be able to meet her.  I know it seems like a little bit of the opposite of what I had just said to him, but, again, I try to remember what he sees each day.  And while my points had to be made, I had also promised to be firm, but leave with kindness.  I was finally able to share my feelings with him from four years ago - that was stern mama bear.  But mama bears are still mamas.  And so I did keep to my promise and left with kindness and a hope that my approach and him meeting Meagan next time would start to turn his heart, even if just a little bit.

After the appointment, I felt good about the plan for monitoring this pregnancy, but also felt even better that we were prepared for just about anything.  Whatever the tests in the upcoming weeks show, we are ready.  We love this baby and we would love a boy, girl, 'typical' or another special needs child.  Our hearts are open to it all and we are very excited for this new addition to the family.

Brian and I had decided early on that we would not wait to tell the kids about the new baby.  I was already feeling pretty sick, was falling asleep after school at times, and some of the older kids who know I typically just go, go, go were concerned.  They had already asked me what was wrong when I was so tired or feeling ill.  We got a "big sister" t-shirt for Meagan and decided to call the girls into the living room and write them a cute note to read which would lead them to noticing Meagan's shirt.  To say it didn't quite go as planned would be an understatement. But, a really funny understatement.  It kind of opened my eyes to how innocent the kids still are at these ages - or even though they know about seizures, and meds, and surgeries, and therapies, they still knew relatively little about how they actually came to be sisters.  I won't say much more about it, but will simply post the video below.  I'm positive it's just about the funniest video I have ever seen in my life.

The week was certainly filled with ups and downs.  The girls' reaction to the news was certainly a highlight, whereas the specialist visit was somewhat of a drag to the week, but both had their purpose.  And through it all the only reason I had the words to get through was because of Meagan.  Without her experiences or her teaching me how to be a stronger mama, I wouldn't be able to be who I am today and get through the appointments I will need. Without her, we wouldn't be the family we are, and without her, the world would be a darker place.  I'm always thankful I'm her mom, but in moments like at the doctor office, my eyes are opened even more as to why she is in our lives.  There is a lot of work to do.  And she gives me the words to get started.