Friday, May 02, 2014

Special Needs Spotlight || Brenna



My name is Courtney Westlake, and I am wife to Evan and mother to Connor and Brenna, who are 4 and 2. When Evan and I found out that a precious daughter would be joining her big brother in our family, we really felt on top of the world as we envisioned a little girl with bouncy pigtails chasing after her older brother. My pregnancy was pretty uneventful, and we were so excited when I went into labor 4 weeks early right before Christmas 2011. But the second that our daughter entered the world, we knew something was wrong. And since that day, she has been teaching us that though this is not the life we had planned, it is the life God meant for us to live and to share with others through my blog, as we all discover just how beautiful different can be.

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Miggy:  Can you take me back to the day you knew your daughter was going to have special needs--did you find out during a prenatal ultrasound or after birth?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Courtney:  We first found out that Brenna had a skin condition when she was born.  Even then, the severity didn’t sink in…I thought that she may look a little different, but I felt I could handle that. After she was born, there was a lot of confusion – her appearance was so shocking that for a second, I thought she might be stillborn, and it is such a rare condition that none of the medical staff had seen it before.  As the hours progressed and she was taken to a nearby NICU, I began to get more scared, but even then, I had a strange clarity that we would all be OK, no matter what happened.  Looking back, I am glad that I didn’t recognize all that would lie ahead in those early hours.



Miggy:  As you told me Brenna has a very rare skin disease called Harlequin Ichthyosis.  Can you educate us about this condition and explain how Brenna’s needs affect your day-to-day life? 

Courtney: Harlequin Ichthyosis means that Brenna lacks a protein that allows her body to form her skin correctly. Her body recognizes this “error” and tries to make up for it by producing way more skin than it should.

Basically, Brenna’s skin doesn’t do the jobs that skin typically does – it doesn’t keep her hydrated, it doesn’t allow her body to regulate its temperature (she can’t even sweat to cool herself off), and it doesn’t keep germs out of her body, so infections are always a concern, everyday. Brenna’s skin has the appearance of a terrible sunburn – deep red and peeling. It doesn’t stretch, so it is very tight and restrictive.
                                                                           
Day-to-day, her care is constant. She must take a long daily bath to soak in the water and to scrub off her “extra” skin so it doesn’t build up, and we coat her in Aquaphor every 3-4 hours to keep her skin moist. We must always be careful about germs and hand-washing to minimize infections, and the Aquaphor everywhere leads to a LOT of laundry! We also have to monitor her temperature because she can overheat easily.

Additionally, Brenna has been tube-fed since she was 8 months old because her body uses so many calories making skin, so planning tube feedings and blending food for her take a lot of my time! (We are currently in the middle of trying to wean her from her tube, and it’s going really well!)
  
                             
Miggy:  What are the biggest worries you face for Brenna?  And how do you manage these worries and fears so they don't take over your life?   

Courtney: I think my biggest worries lie in peer acceptance and self-acceptance. I wish everyone could see her as we do…and I wish she could see herself as we do!  Though I know she will struggle with who she is as all children do, I pray that she likes herself, and I pray for self-confidence and self-assurance. And I hope constantly for kindness from others.

But following on that, I hope to instill in her that her value is not in how she looks but in how she acts and how she treats other people. When I begin to worry about how people will treat her (and how she will treat herself), I know that my purpose is to shape her (and her brother too) to be a good and kind person, to give back and to help others. I believe through acceptance, love and encouragement of children by their parents, they are then equipped to accept, love and encourage both themselves and others around them.
  


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  This question came about because I never envisioned saying things like, "Where's the baby's arm?  Did we bring her arm?"  In reference to my daughter's prosthetic arm, while strangers look on like we're crazy people.    

Courtney:  OK I just laughed out loud when I read what you say about your daughter’s arm J
We try to laugh as much as possible about it, because we feel humor gets us through tough times.  My husband Evan will make up songs, like singing “Dry Girl” to the tune of “My Girl” as Brenna waits for her bath, dry skin flaking off all over her changing table.

One day at the grocery store, it was late afternoon and really crowded. Brenna elicits a lot of stares with her bright red skin and unique features, and this particular day, it seemed like everyone was staring at us.  She began to get feisty and squealing like any toddler does… so I proclaimed loudly “Brenna, you better quiet down or everyone is going to start staring at you!”

I’m still waiting for the day when someone makes a comment about how red her skin is and I can feign complete shock, like I’ve never noticed it before J


Miggy:  I can certainly relate to having a child with visible differences--which can be very difficult at times and presents unique challenges.  How can people best approach or respond to Brenna? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Courtney:  I think everyone should do one thing when they see someone with a physical difference: smile and say hi as they typically would. I don’t mind when people ask about it in a very kind and caring way – it’s more about the tone than the words – because I know people are curious. But I also want people to remember that with all physical differences, this is just how they look and they are people with awesome personalities and interests and families who love them. Just be friendly and say hi!


Miggy:  I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to Brenna? 

Courtney:  Brenna has THE BEST big brother, Connor. He was 2.5 years old when she was born, and he always been so caring and protective of her. He wants to include her in everything (he actually asks to wake her from her nap so she can play with us!) He is now 4.5 and he really has no idea that she is “different” – and we strive to do everything we normally would as a family. I love seeing their close relationship develop and flourish, and I know that he will be a more compassionate individual because of her.



Miggy:  What is the biggest lesson you’ve learned since becoming Brenna's mom?    

Courtney:  Since Brenna’s birth, I’ve learned how to be overwhelmed by the beauty all around us. And I’ve learned to see the stories in life, not just the events; to celebrate the beautiful people, and not the occasions.


I believe Brenna was uniquely and purposely created by God, and she helps me learn and discover every day how to celebrate differences, how to see the spectacular beauty this world has to offer.

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Courtney, that was beautiful.  Really, I am so deeply moved by so much of what you said.  "I've learned how to be overwhelmed by the beauty all around us."  I've read that sentence over and over again, just to let it sink in.  And yes! to seeing the stories in life, not just the events.  And I love what you shared about your worries--of course you have them, like any parent and especially a special needs parent--but that you try to shape your children to be good and kind people, to love and accept not only others, but also themselves just the way they are.  So, so valuable.  Thanks again Courtney, you have a beautiful family.  But you already knew that.  :)  And I would encourage my readers here to click over to Courtney's blog to read more about Brenna and their amazing journey.  

As always if you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly at thislittlemiggy at gmail dot com.

Have a fantastic weekend!


7 comments:

  1. Sarah7:19 AM

    I love these showcases and I enjoy getting a glimpse into this kind of stuff. I feel like we all feel so awkward around people with visible impairments and I never, ever know what to do. Courtney says we should just smile and say hi as we normally would, and that she doesn't mind if people ask kindly because she understands their curiosity. But then I know you've said in the past that some days you just want to sit at the playground, not have to answer the same question for the millionth time.
    So onto my question. Whenever I see a child in a wheelchair or some other "obvious" disability, I seriously feel unbelievably awkward. I never know if I should ask or if that's rude, or if it's ruder still to just pretend like I don't notice it. Are you appreciative when you don't have to answer and explain yet again, or do you resent the fact that if I don't bring it up, you think I'm pretending I don't see it? I wish I knew the answer to this because I never know what's the right thing to do.
    And sorry this is so long-winded but I have another related question. When people say, "Just smile and say hi"...does that get exhausting, too? I remember seeing a mom with her Down syndrome daughter at the supermarket once and smiling at them, but then I feel like an idiot, am i being rude or intrusive by not being completely oblivious to them like I would have been if she didn't have Down? Seriously I feel like a complete moron asking these questions, but it's something that i've often wondered about.

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    1. Sarah, I have to say that sometimes the questions do get tiresome. But I think I would rather someone ask than to rudely stare or look at us with disgust (which has happened.) I think you should just act as you normally would. You seem like you would normally smile at a child, so I don't think it's out of line to smile at a little girl with Down syndrome! Just remember that it doesn't matter WHY anyone looks the way they do. You might be curious about a lot of things that you wouldn't ask about - like how much someone's job pays!? ha! But it really shouldn't affect how you treat someone. Does that make sense? Just as your eyes being a certain color is a small part of you, so is every other kind of visual difference. If all anyone ever talked about was your eyes, you would get sick of it. Just be yourself and remind yourself that there is a whole lot more to someone than that small part you're seeing. We are all just people!

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    2. Sarah-- Thanks for taking the time to ask this question.

      For me I think I was saying that I wish I didn't have to answer these questions sometimes because I wish my daughter could just have a different experience. I wish she could go to the playground and just go to the playground. Not, go to the playground get stared at, pointed at, talked about, etc. I wish I didn't always have to be in educate and answer question mode because like anyone else, I'm not always chipper and when I'm helping kids understand her differences I want to be kind, happy and friendly so they in turn learn that there's nothing to be afraid of, etc. So yes,it can get a little tiring because that's the nature of our situation, BUT like Sarah said I would much rather have them ask questions than stare rudely, or lead their kids somewhere else. If you have kids it's SO much better to let them come ask questions (preferably with your help, because a parent knows how their own kid learns and understand best). If it's just you, an adult, I second Sarah's advice--smile and say hi. It would seem strange for me in an adult just came up and said, "What happened?" (and this has happened and it is strange/rude) but if it was an adult who was sitting next to me on a park bench, or was interacting with me at a store and then asked about her it would be (and has been) much less strange.

      Its one thing to approach our kiddos as an oddity, it's another to approach them as a person first. I don't expect people not to notice her differences. That would be ridiculous. Take a second, notice and try to move on as quickly as possible to see the whole person. I don't know about Sarah, but I remember worrying a lot about how people would react to our daughter out in public, which is why I appreciate a smile so much. It lets me know right away that I'm not encountering hostile territory and does a lot to put me at ease.

      I hope it helps to also know I still struggle with these very things sometimes! I guess I feel all this pressure because I'm supposed to know exactly how to handle these situations so I feel this pressure, then I overthink it and eventually I stumble over some awkward words. Thanks again for asking.

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  2. My real life friend Carly has this condition- she blogs about it and just got engaged!

    Miggy would you consider removing the captcha number thing? It stops me commenting and I really loathe it! xx

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    1. FF--Carly just got engaged! That's wonderful. And for some reason I didn't make the connection that this is the same condition she has. As for the captcha number thing, I would love to remove it but I still get a lot of spam comments even with it on...so I don't think I can. For what it's worth I will now appreciate your comments even more knowing how much you loathe it. :)

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    2. Yes, Carly and I are in close contact… she has a different kind of ichthyosis, called Netherton's Syndrome, but hers is also severe like Brenna's and they have a similar appearance!

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  3. Look at that glorious smiling face! Brenna you are a beautiful little dolly! Thank you for sharing her Courtney. I love your family pics!

    And Miggy, I learn so much from your blog. I adored the story about Lamp and her golden shoes! I don't comment often but I read every entry so thanks again for sharing :)

    Bec from Australia :)

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