Wednesday, November 2, 2016

October Updates

I can't believe October is already over! Despite a string of annoying minor issues, last month really did fly by.  We are currently dealing with outer ear infections in both ears following a cold and stomach virus earlier in the month.  This has resulted in a lot of poor sleep and a lot of puke to clean up.  While it kind of feels like poor Abby can't catch a break, I am incredibly thankful that all that has been required so far is a few extra trips to the pediatrician and that none of these issues has landed her in the hospital.

On a very positive note, Abby has made some exciting jumps on the therapy side of things: After facing a lot of resistance in her gait-trainer since finishing up sternal precautions, Abby is now walking in it better than ever before and with even less assistance - apparently she did NOT want to be strapped in anymore.  Stubborn girl.  She also recently discovered her "oh", and "ooo" vowels and with them, her first attempts at purposeful speech!  She is saying "uh oh", a version of "Elmo", and even the dreaded "no" - which we're completely thrilled about.  She seems to be trying to use some of her other sounds to make worlds suddenly as well; balls and bubbles are sometimes referred to through speech as well as her regular signs, and she is "copying" more and more words as we say them.  So exciting! In addition to those amazing accomplishments, we were also able to get Abby out to the pumpkin patch and had a really great Halloween!

And now, since I've buttered you all up with lots of adorable pictures, I shall step onto my soapbox:

Early last month we trekked out to see the craniofacial team at Texas Children's to discuss the next steps for Aberdeen's fused cranial sutures.  They suggested that now that her heart is in a less precarious position that we could do something about her skull if we wanted.  If we WANTED?  No, we do not WANT, thanks though.  It was suggested that there was enough room in her skull currently that her fused sutures shouldn't be causing any undue pressure on her brain and that surgery right now would be for more cosmetic or "reconstructive" reasons. Due to this, we are going to wait.  The craniofacial team gave us a little bit of pushback concerning our opinions on not doing surgery for cosmetic reasons, stating that "those are important reasons too." Look, we can acknowledge that a person's physical appearance may impact other areas of their life, but with everything Abby has been through we just cannot in good conscience put her through another major surgery for something that isn't currently a necessity. We are prepared to eventually NEED to do another cranial surgery to create better protection for Aberdeen's eyes as well as open up those sutures again, but thankfully that time has not yet arrived.  

Also, in an effort to be candid, I'd like to express how dismayed I am that there is such an emphasis placed on physical conformity within our country that it would be deemed necessary to put a CHILD through a major surgery solely to alter their appearance.  I wish that instead we did a better job of teaching acceptance of those who may look different.  

We had an unpleasant experience in the last week, where an older child made a very rude comment about Aberdeen's appearance.  I can't say that I handled it all that well. Chalk it up to social anxiety, but while I am brilliant at coming up with zingers and teachable moments after the fact, in the moment I am much more prone to either silence or crying when approached with unpleasantness.  I wish I had told that child that Abby is just a sweet little girl who is friendly and strong and deserving of all the respect in the world, but in that moment, all I could do was hold my baby close and choke back some tears, thankful that she didn't understand what he'd just said.  I wish I could advise that child's parents on how to approach people who are different than them. I wish I could ask that they teach them that children like Aberdeen are PEOPLE with thoughts and feelings and worth. However, since I don't know this family, I'll say it to all of you:

PARENTS: Please, I implore you, expose your children to people who are different than them. Explain to them that really they are more alike than they are different.  Teach them that there is nothing to be scared of, that these PEOPLE have feelings that can be hurt, and that they deserve the kindness and respect that would be awarded to anyone else.  Encourage them to ask questions, and genuinely seek out answers, so that maybe in the future, they will greet these PEOPLE with understanding instead of negativity.

We would never shirk a well-intended question.  I'm happy to tell you about Aberdeen, let her say hi to you, and answer any queries you may have, but I can't do that if you don't ask. If you shush your children when they start to ask a question or shy away from making eye contact with us, all you do is increase our otherness. Engage us, we don't bite.

To sum up what has been an unexpectedly cathartic post, I'd like to pose a question to the internets: Since we really haven't had to deal with many negative comments over the past two years, I haven't come up with a good plan for responding to them when they do pop up. I was thinking about printing up some information on Aberdeen's conditions (think business card sized info) to give to people in the event that something like this happens again.  Does this seems like a reasonable and helpful idea?  I don't like relying on my ability to handle situations perfectly, and thought this might at least help start the conversation.  Thoughts?


  1. I think Abby is just about the cutest lititle pumpkin I've ever seen!!! So very happy that she has had a good month....keep flying high sweet little bird!!!!

  2. I think Abby is just about the cutest lititle pumpkin I've ever seen!!! So very happy that she has had a good month....keep flying high sweet little bird!!!!

  3. I think you have a wonderful idea with the card. What do you think about writing it in Abby's voice? Hi, my name is Abby. then in a few simple words explain her uniqueness. Hurrah for a good October!

  4. I think the card is a great idea. I know I have had other mothers with children tht have " not the norm" circumstances become tired of even the best intended questions. It could keep things so fun and simple especially in Abby's voice!

  5. The card idea is great. You can use it to respond to rude and respectful comments alike. And I am so happy to hear about Aberdeen's happy noises and strides forward! It is also a good reminder to teach my kids how to ask nice questions. Love you guys!

  6. This post made me think of another amazing baby and her mom who have worked to start a movement to choose kind when meeting kids that might look different. She might be able to understand and give u ideas. She's been so inspirational and it's all to help find acceptance for her daughter with Apert Syndrome and raise awareness.