Friday, March 27, 2015

Special Needs Spotlight || Silas




Hi!  I'm Allison, wife to Sol and mom to Silas our super rare #smalldude.  Sol and I are two small town Nebraska kids who now call Kansas City home.  He loves CrossFit, I love Starbucks, and we both love our little medical mess.  Silas was born with a rare genetic abnormality called 9p23 deletion 16q trisomy.  It is so rare that it doesn't have a name and isn't classified as a syndrome (that we are aware of).  Our little guy is quite complicated, but I will try and make things a bit easier to understand.  He is missing information on the short arm (p) of his 9th chromosome and has duplicate information of the long arm (q) of his 16th chromosome.  The additional piece of 16 is attached to the 9th chromosome where the information is missing.  This makes for an unbalanced translocation which has caused many anomalies throughout his body.  This "mix up" is de novo (new in him) meaning we are not carriers and won't pass this abnormality on to future children.  We are currently enjoying being first time parents and taking things day by day as we navigate through the special needs world.  You can join us in our journey by following Mighty Si #smalldude on Facebook (www.facebook.com/smalldude).     

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Miggy:  Allison, thank you so much for being here and sharing your story today.  Can you take me back to the day you knew you Silas would have special needs?  Was this at an ultrasound, at birth or sometime after?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Allison:  During our 20 week ultrasound, we found out that Silas' stomach was not very big and they were having trouble seeing it.  Then we were sent to a perinatologist's office, where we were told that our baby's heart was abnormal.  From that appointment on we had many different tests and ultrasounds and more negative reports.  We chose not to do an amniocentesis because it wouldn't change the outcome.  We did have a blood test done (Harmony Test) that screens for Trisomy 13, 18, and 21 which came back normal.  Since we did not do the amniocentesis we didn't really know what was going on with Si until after he was born.  After learning that Si had all of these issues, we were obviously completely devastated.  This went from being what was supposed to be one of the most special, best times of my life to the worst.  Every day, I prayed and prayed that all of these things were structural and could be fixed and of course I hoped they were wrong.  On May 3, 2013, Silas Solomon was born with many congenital anomalies confirming a lot of the diagnosis he received in utero and also confirming my worst fear - chromosome abnormality - not fixable, broken, nothing we can do.  I completely shut down and was very distant, depressed and angry.  As a first time mom, you expect there to be this amazing connection but there was nothing and it was like this for a very long time.  This wasn't the perfect child I was expecting and the grief was so heavy and relentless.  Thankfully, I have an amazing family and great friends that stuck by me through the darkest, saddest times.  I think back now at that time and wish I would've known that everything was going to be OK.  



Miggy:  Explain how Silas’ needs affect your day-to-day life?  

Allison:  Currently, Silas is a pretty easy going little guy!  Our lives significantly changed when he was approved for in home nursing.  Sol and I both work and knowing we aren’t going to get a call to pick up a sick child every other day took a huge weight off of our shoulders.  When Si is ill, it sometimes takes weeks for him to fully recover and sometimes he even requires oxygen.  We are so fortunate to have the opportunity to be able to work and know our son is being well taken care of during the day.  Si is also non mobile and gtube (feeding tube) fed making for two of the biggest challenges we have faced in this season of our journey.  At this time he eats nothing by mouth and usually gets fed 5 times a day via gtube which generally takes 45 min per feed.  This isn’t a huge deal but it definitely has deterred us from doing certain things and going places when we know we have to pack his food, he’ll have to be hooked up, and there really isn’t a good place to put him.  Since he has graduated from his infant car seat and can’t sit independently, things like shopping or going out to eat pose problems.  It’s the little things we take for granted, like eating and sitting, that seem to be some of our biggest day to day issues.  Lastly, I can’t leave out the appointments!  Yep, every medical momma knows this is one of the most exhausting aspects of having a special needs kiddo, especially if both parents are working.  I’m pretty sure I cried when I got our list of first follow-up appointments for Silas, but somehow we’ve managed to make it work!


Miggy:  What are the biggest worries you face for Silas?    

Allison:  I worry all the time about Si.  Sometimes I worry too much because I know too much and other times I worry because we just don’t know enough.  Due to Si’s diagnosis a lot of things are unknown and there always seems to be a lot of grey area.  One of my biggest fears/worries as a special needs mom is that something would happen under my watch and I wouldn’t know what to do and ultimately not be able to save him.  Seeing your child struggle to breathe will put that type of fear in you.  I always feel like I am waiting on the next thing to present itself.  What is going to be the next issue to arise and will this be the something that will take his life?  Are the decisions we make for him going to be the right decisions?  Of course you have all the scary medical issues that you worry about, but there are also some of the more normal worries like will he have friends, how can I ever send him to school, did he poop today?!    

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?   

Allison:  I don’t necessarily have a funny story, but we would always joke about using Si’s oxygen to give us a boost if we were ill or needed a pick me up.  Thankfully, no one has needed oxygen recently in this house!

Miggy:  How can people best approach or respond to Silas? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Allison:  Silas is a pretty approachable guy.  He also is only two (in a couple months) and is definitely not shy!  We haven’t run into too many awkward or hurtful situations, probably because of Si’s age, but I’m sure the time will come.  In fact, I’m guilty of making things more awkward by introducing Silas followed promptly with “he has special needs”.  I think I do this in hopes that it will avoid some of those awkward/hurtful situations.  I think for us, things get awkward when the “milestones” conversation comes into play – no Si’s not eating by mouth, no I don’t know if he’ll ever walk, no he isn’t talking, no he can’t sit, etc.  CRICKETS!  It’s awkward, but yet I’m not really offended by it because it is what it is.  I have to always remember that if I wasn’t a special needs parent, I would probably be that person asking those same questions!

Miggy:  I know that before I had a daughter with special needs I had a lot of ideas and assumptions about what it would be like to have a child with special needs.  Naturally, a lot of those ideas have changed.  Are there some ideas you had about having a child with special needs that have since changed? What would you like the world to know about being Silas' mom?

Allison:  When I found out Silas was going to have special needs, I pretty much thought that my life was over.  I remembered thinking he was going to be a shell of a person who was in a vegetative state (please don't be offended this is my own ignorance!).  I was sure that I would need to quit my job, stop doing anything enjoyable, and take Si to appointments everyday/all day for the rest of my life.  I was also sure that this kid was just here to ruin my life (selfish much?!), but boy was I wrong!  Yes, having a child with special needs is hard and sometimes very isolating but Si has been the biggest blessing in disguise!  He has taught me so much in his short little life and has completely changed how I view people with disabilities.  He is his own person who has totally exceeded many of my initial expectations and made me realize that special needs children are people too.  They are people that have hearts, and feelings, and personalities.  I'm so thankful that he has opened my eyes and my heart and I'm proud to be his momma.  


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?

Allison:  Oh my, do I just have to pick one?!  There are so many lessons that I've learned since becoming a special needs mom.  I would say that the biggest lesson I've learned is that we are not in control and sometimes the plans we have for ourselves are not the plans that God has intended for our life.  It's been very hard to see many of the dreams I had for my child and my family slip away, but it's also been very amazing to see door after door open with new friendships and opportunities for our family.  This isn't how I imagined my life to be, but by ultimately trusting in Him, I know everything is going to be okay.


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Allison, thank you so much.  Silas is a cutie-pa-toutie!  So my favorite part about your spotlight was your raw honesty.  I think it is not an uncommon experience to feel like life as you know it is over when you first find out that your child has special needs. It can be so hard to wrap your mind around! And while life certainly does change, as you know it's not the doom and gloom you imagined.  Yes there are very really struggles and difficulties, but the love is very real as well.  I'm so glad you spoke your truth because that is what helps others come to see that having those thoughts doesn't make them a horrible person once they know and accept that, then perhaps they can begin to open their hearts and minds to more love and understanding.  Also, yes to being open to the life God has in store for us.... I mean really, who's life goes exactly as planned anyway?  Thanks again Allison and please give your cutie Si a squeeze from me.  

Sometimes I'm still amazed at how much I take in and learn from each spotlight. For me, these never get old and always feel like a I've cracked my brain and heart open just a little bit wider each time.  So please keep 'em coming!  If you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!  

Wednesday, March 25, 2015

How to keep Your Moccasins from Coming Untied



Or my most important post ever.

You guys know that I'm all about spreading awareness.  Well lets just open the awareness gates a little wider to include really important topics like "how to make sure your moccasins don't come untied, but if they do come untied I have found the best youtube video ever to help you learn how to retie them."  If you have moccasin slippers with leather laces chances are they've come untied, and to your everyday annoyance you've deduced that 1) moccasins aren't tied in the traditional manner of every other laced shoe known to mankind and 2) you have no idea how retie those mother freaking moccasin laces. I'm here to help.

As with most things in life prevention is the best course of action.  When you buy your moccasin slippers with those perfectly tied moccasin laces, the first thing you should do when you get home is take some fabric glue and glue underneath and around those knots.




So I actually didn't glue these right when I got home as I should have.  Then my precocious baby Zuzu got a hold of one mocc and undid the laces, which is actually a bit difficult so good job genius baby.  For a few weeks now I've been walking around with one perfectly tied moccasin, and one moccasin that I've been tying and re-tying in vain, knowing it's not right but not knowing how to fix it.  Until Monday when enough was enough.  I glued the good mocc laces in place and then spent a some time looking up every mocc tying tutorial on the internet.  This is the best video by far.  If you read the comments people are like OMG thank you man!  I was going crazy trying to figure this out! You're not alone friend, you're not alone.  I suggest watching the video, pausing and repeating as necessary.  I've also broken it down for you in pictures below:


1.  Left lace (which is also a little longer) under right.
2. With the new left lace make a loop and put the tail under.
3.  Take new right side and go over the top tucking underneath the loops.
4. Pull right side through leaving a little loop.
5 +6.  Take the end of that same loop and pull it around and through the loop you just made.
7.  Pull loop through.
8.  Tighten.


You really do need to watch the video, but the pictures should help too.


As I said before prevention is the best medicine, they're not perfect (my re-tied shoe is on the left) but so much better than before.  The ends of the laces are on the bottom, the top of my moccasins stay folded over, my annoyance levels return to normal and all is right with the world.  Whew!

Now it's time to go color code my socks and vacuum the silverware drawer.

Oh, and you're welcome.

Monday, March 23, 2015

Art + Motherhood



There are so many different reasons why I paint.

Zuzu has been driving me crazy lately.  Like cra-zee.

The thing about art--good art--is it's ability to transform something inside us, make us feel things we didn't feel just moments before.  For me it's often this strange mix of nostalgia and novelty, a pang in my heart that makes me feel I found the very thing I never knew I was looking for all along.  GK Chesterson said, We have all forgotten what we really are.  All that we call spirit, and art, and ecstacy only means that for one awful instant we remember that we forget. CS Lewis said, If we find ourselves with a desire that nothing in this world can satisfy, the most probably explanation is that we were made for another world.  So often I think that art takes us to the brink of this remembering of things we forget, this other.  At its best, art lifts us and can both stir and satiate, at least temporarily, these longings.



The thing about motherhood is that the joy comes in moments, as Elder Ballard once said.  (Perhaps you've read Glennon Melton's essay Don't Carpe Deim about motherhood and how we can't enjoy it all the time...but the moments, we can enjoy those.  I'm not trying to rewrite that essay here, but you should read it.  Its good.)  Back to what I was saying, joy in parenting is in the moments.  This feels especially applicable to me with Zuzu right now.  When you take the total innocence coupled with the unbridled curiosity of a 15 month old baby you get a constant flow of disasters on the brink, disasters actually occurring and disasters just completed.  I am in a constant state of motion trying to keep up with the most adorable hurricane this side of the Mississippi.  Yet as you may have guessed, or well know from experience, living life in constant motion is exhausting.



Its amazing and sometimes almost odd that even the smallest artistic endeavors can leave me feeling more elevated than regular life. For example childrens books can feel unnervingly magical.  Even though I'm reading about bedtime, baths, busy spiders and hungry caterpillars. Suddenly all those things feel special.  Not ordinary.  Sometimes I want to jump in the book and be in that moment, and I'm like what is going on?  Why is this version of life so charming?  There are even these tricky children's books that make disobedient children who destroy homes and sanity for everyone in the homes feel magical and delightful. How do they do that?  Art.  Illustrations, words and humor all mixed together make us see and feel the world around us differently. This is nothing new.  How many  people have ever read Romeo + Juliet thinking, Why can't I find my suicide pact soul mate?  Sigh. Of course taken to extremes this can be problematic, but in the day to day drudgery of life this other, this feeling of being alive can be a rainstorm on our parched, desert souls.



And so when I was looking at my instagram feed last week, at the beautiful pictures of my beautiful offspring I was surprised to think, these pictures feel more beautiful then the real moment did.  And so is it fake?  Is my instagram feed and/or blog perpetuating a myth about my life and how idyllic it is or isn't?  No. The problem is that we often base reality on how we feel, but sometimes our feelings are not reflective of reality at all. The reality of these amazing, beautiful creatures I call my children who have beating hearts and thinking minds, who I somehow helped bring into existence and who in turn brought the mother in me into existence is a miracle!  They are walking, breathing, living miracles.  Their very existence is poetry in motion.  They are the riches of my life.  But the miracle and beauty of my children is so often overshadowed by fatigue, the routine of dishes and laundry and the slow tick-tock of the clock.  The fact that I can look at a picture of a moment from earlier in the day, week or month and see and feel things that I wasn't able to see and feel in the moment is just one more testament to the power of art.

This is why I paint, this is why I take pictures and this is why I write:

To remember that I forget.  


Friday, March 20, 2015

Special Needs Spotlight || Brantley


My name is Taryn Taylor and I am the mother to a beautiful two year old little girl named Gentry and charmingly handsome 9 month old son named Brantley. My husband Bryan and I have been married almost 4 years (on Brantley’s birthday actually). My son was born June 10, 2014 and we found out in August that his MECP2 gene had been duplicated. It has been a beautiful and scary roller coaster ride…..ok who am I kidding? Mostly scary! I never thought this could happen to our family but with the support of so many wonderful family and friends we are kicking MECP2 right in the ass! (Pardon my language, feel free to replace that!) Brantley is the happiest baby I have ever met, he ALWAYS has a smile on his face. His diagnosis does not define him. He was born a fighter and shows us all a deeper love than I could have ever imagined. Thank you Miggy for including Brantley in your spotlight, we are all about raising awareness and what an amazing thing you are doing for so many others!
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Miggy:  Taryn, thank you so much for participating in the special needs spotlight. Can you take me back to the day your son was diagnosed with MECP2 Deletion?  What was that day like, do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?
Taryn:  The day Brantley was diagnosed will forever be burned into my mind. My husband’s company was having a family Zoo Day in Oklahoma City and we really wanted to take our daughter Gentry but Brantley had just gotten out of the hospital a couple weeks before that, it was a very hot August day and didn’t think he should go so my mom (his nana) offered to watch him. It was August 23rd (my mom and also my father-in-laws birthday) and while we were at the zoo we had received a phone call that our insurance company wasn’t going to cover the cost of Brantley’s helicopter ride, a whopping $33K bill. I remember thinking this day couldn’t get any worse. We made it home and right after we walked into the door of my mom’s house I received a telephone call from Brantley’s genetic doctor. I knew if they were calling on a Saturday that it wasn’t good news and as the words echoed into my ear that my son had a genetic disorder I remember that I couldn’t catch my breath. Tears were falling and I couldn’t get any words out. I remember the doctor saying that he would have some delays and I kept saying but he can get tutors and that will help, right? If we got him help then he wouldn’t have delays, right? The doctors said she couldn’t say for sure but that she felt it would be more profound and we would see the effects. The genetics doctors were so amazing, they called to check on me and she gave me her personal cell phone number so that if I had any questions I could call and speak directly to her. The next Monday we scheduled an appointment to meet with the doctors and find out what this meant for our family. It is crazy to think back to that day and how far our family has truly come. I didn’t think the tears would ever stop falling, that my heart would ever stop hurting or that I would be able to laugh and be light hearted again.


Miggy:  Will you please educate us on what MECP2 duplication syndrome is and how it affects Brantley's and your day-to-day life?  
                                                                                
Taryn:  MECP2 duplication syndrome is found mostly in males (there are a few girls that have it) and it causes the brain to make too much protein. It is almost the opposite of Retts Syndrome which affects mostly females but the MECP2 gene makes too little protein. It wasn’t even diagnosed until 2006 so it is still very rare. They are actually working on a cure, it is still a long ways off but I am hoping that Brantley will someday be cured. MECP2 causes Brantley to be hypotonic (floppy, weak muscle tone), delayed milestones such as sitting and walking, little to no speech, seizures, recurrent respiratory infections and much more. We have obviously seen the delayed milestones, Brantley is 9 months old and is just now sitting unassisted but only for a few seconds at a time (still a huge accomplishment in our house)! The things we have seen the most in Brantley are the recurrent respiratory infections, he has had 3 hospital stays but we finally were able to get oxygen so that we could keep him at home and he has been sick on and off since Thanksgiving, needless to say we are ready for spring! A few things that have affected our day-to-day lives is the constant stream of doctor’s appointments, trying to keep up with them and feeling guilty for taking off work. My mom owns her own donut store so she works nights and keeps Brantley all day so that my husband and I can continue to work, she is exhausted but she refuses to let Brantley go to a daycare filled with other germy children! For that we are forever grateful.


Miggy:  What are the biggest worries you face for Brantley?    


Taryn:  I could go on and on with this question. For the longest time I will be honest, I thought Brantley wouldn’t understand anything that was going on around him. It is through other families that have older children that have proved that the children can understand what is going but they cannot articulate or formulate answers to talk back. So a huge worry for me is that children at school will make fun of Brantley and he will be able to understand what is being said to him. I worry that he will see his sister getting to do all sorts of things and know that he cannot do them because of the monster of a disorder. I worry that his immune system is so weak that he will die (this year alone we had around 6 children pass away I believe. I think all of them were under the age of 2). I worry that he will die before there is a cure. I worry for not only my daughter but also for myself and my husband. We all had a different life planned out for Brantley, I am starting to get into our “new” normal but I will always wish he could play baseball or get married and have his own children and I know I will never fully accept his disorder.
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 situation?   


Taryn:  Brantley has issues with his bowels…..he gets constipated very easily! Lately, he has been gassier than normal so Bryan called me into the living room one evening and said watch this and he tickled Brantley under his ribs and he started tooting. Bryan stopped and did it again, he tooted again, we got a pretty good laugh at that one!
My favorite just happened last night though, Bryan took Brantley to his therapy session and I stayed home with Gentry. I got a text from Bryan telling me that Brantley had farted so loud that he actually thought it was him, he said he was so embarrassed. I then asked him how on earth he didn’t know if he was the one that actually farted (which he never answered that question) then I asked him if the therapists heard it and if they thought it was him instead of Brantley. He replied back saying that the therapists were in the other room but he was worried they heard it and thought it was him, he said it was so loud that even if he had told them it was Brantley they never would have believed him! My husband does not embarrass easily but he said he was mortified.....if he is reading this then I am sorry J! :)

Miggy:  How can people best approach or respond to Brantley? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Taryn:  I would say right now we have not had a lot of awkward or hurtful situations because he is quite small for his age so mostly people will say “oh look at the new baby”. I tend to just let it go and never correct anyone in those situations. If I get to talking to someone about his disorder the things that probably hurt the most is “but he looks so normal”, “you never know, he may talk”! While I would love to believe he will be able to do certain things, I know it won’t happen. I have seen proof from other families, sometimes I want to scream and say yes, I do know because you better believe I have done extensive research on his disorder! One of Bryan’s family members printed off some business cards with a link to learn more about MECP2, and pictures of Brantley on them. I have gotten to use them a few times and it is a great way to raise awareness too.
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 Brantley?
Taryn:  Gentry is young, she will be 2 on April 3rd so they are only 14 months apart. She doesn’t understand anything about her brother’s disorder yet but she LOVES him so much. She loves to kiss and hug on him, don’t get me wrong she also loves to hit and sit on him too! In all seriousness, I think it is better she is so young, she loves him for who he is, not because she has to. I always had this idea that they would be inseparable and for a while I feared his diagnosis would change that. I think they will still be as close as I pictured them but she will be the protector instead of Brantley as I envisioned.



Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?         
Taryn:  Never judge a book by its cover. Yes, my son may look normal so if he can’t walk by the time he is two or can’t say any words ever then please don’t bring it up because I already know. I am sure I have had those thoughts a time or two. Judging another parent. The truth is, you don’t know their story. Taking care of a special needs child is the most mentally/physically exhausting and scariest thing I have ever been through. If you see a parent to a special needs child, I encourage you to go up to them and tell them how beautiful their child is and what a great job you think they are doing. Sometimes they just need to hear those words.
Brantley has taught me how to love on another level. I have always felt uncomfortable and awkward around special needs kids which has always embarrassed me but I think that is a pretty common feeling, or at least I hope I am not alone on that! I never knew how to act around children with special needs or what to say. Brantley is going to teach me how to be more comfortable in my own skin. I am so PROUD that he is my son and I love showing him off. Him and Gentry are our pride and joy and just treat him like anyone else, he loves to laugh! If you would like to follow our journey I have a blog Blogging for Brantly.

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Thanks so much Taryn!  I appreciate your honesty in saying that you have always felt uncomfortable and awkward around people with special needs because no you're definitely not alone.  We need to be able to speak these truths, so we can learn a better way and teach others the same.  The truth is I'm still learning myself and I think we all are on some level.  Which is also why I think it's important to show compassion and kindness to others who are still learning and may not always say the 'right' thing. And I love your mom!  What an amazing and selfless woman.  I wish you and your beautiful family all the best.  Much love!

You guys thanks for all the emails for spotlights!  I have a several people to still get back to so if you haven't heard from me please be patient.  Also, if you're interested in participating please email me!  I ALWAYS need more spotlights.  Thislittlemiggy at gmail dot com.  

Have a fantastic weekend! 

Monday, March 16, 2015

I HELD A TARANTULA!! and the Rest of Our Florida Vacation Recap


It's true. I held a live, very hairy, very large spider in my bare hands.  Which basically means I climbed Mt. Everest in my mind, but we will get to that in a minute.

After spending 3 years in San Antonio it's been a little tough coming back to snowy, cold winters.  So we headed south to Florida for an extra dose of vitamin D and a complete lack of obligation.  It was dreamy.  I looked and looked for a great place for us to stay on AirBNB and what sold me was the fact that the place was within walking distance to the beach, several restaurants and shops.  Honestly, once I booked our place I didn't look up any other plans until we were already in Florida. After we drove from the airport to the condo, I don't think we got in the car for 3 more days. We woke up, hung out, ate some food, eventually made our way to the beach then back again for good food and possibly ice cream.  Friends, this was an actual vacation.


 BurgerFi--so good and coming soon to San Antonio peeps!










One of my favorite little moments at the beach came when Lamp was sitting near me, digging in the sand, then suddenly said, Mom, I'm going to go make a new friend.  Bye! And off she scooted in the sand to those two littles above. Their grandparents were very cute and welcoming of Lamp and wouldn't you know it, she played with those two kids until they left. When I went to go get a few up close -up shots I captured this magic little moment... Lamp' and her new friend both using their feet to hold their shovels and stir the 'soup.'  This happens quite a bit, but I haven't seen it a while and made all of us smile.
*****

Toward the end of our vacation we decided to get out a little more.  First, we took a day trip to Naples and spent the majority of the day at the botanical gardens.  We had only planned to stay there for a couple hours, but stayed pretty much all day. If you're ever in Naples, GO.  Their children's garden alone is worth it.





OK, so here's the truth. Yes we wanted a day trip and to get a way for a while, but we could have chosen a few destinations...the main reason I wanted to go to Naples?  To meet Kelle Hampton.  Natch.  She agreed and we met up with all 6 kids (and B of course) for ice cream.  As we were pulling up to the ice cream place I felt like I was stepping into Kelle's blog seeing these familiar faces I've known so long via the world wide web.  She was of course delightful and her kids were as adorable and sweet as they are online. I don't regret meeting up with Kelle and all our kiddos like this--I wanted to meet them and for her to meet my kiddos too--but Kelle is one of those people you want to sit down and have a good long talk about all the meaty stuff in life.  Chasing 6 kids around an outdoor ice cream shop and into a pool store where our kids slowly deconstructed said pool store little by little does not allow for much meaty conversation...so next time.  But still it was one of the highlights for me.


Followed very quickly by another highlight as promised in the title.  Holding a tarantula.  Which I did.  Because I'm a bada... wait, where was I? OK so B found this place called Safari Edventure where they rescue and rehabilitate animals and promise some up close and personal animal contact--like holding an alligator and petting a wolf.  It was a little home-made-zoo-ish...but better. It was lush and tropical and there were so many different kinds of animals.




Finally we sat down for the presentation portion of the day where dude comes out with our very first animal encounter.  A tarantula, aka my worst nightmare.  I'm cool with snakes, I really want to dive with sharks at some point, but tarantulas have no place in my life. Ever. My most common reoccurring dream growing up were spider dreams and there were always terrifying.  And sometimes at night when I'm trying to go to sleep I'll suddenly imagine there is a tarantula in my bed and then I'm awake again for a very long time.  In short, they are the worst.  But the weird thing is I've thought about this scenario for a while, like if I'm ever somewhere where they are talking about tarantulas and offering for people to hold them, I was going to do it. So weirdly when he first walked out I recoiled in disgust but knew almost immediately that I was gonna hold that s.o.b. if it killed me.  As you can see by my face, it almost did.

But at the same time I was like Boom!  Take that fear.  Conquered!  And honestly I'm a lot less freaked out about tarantulas now. I know this is all sounding very dramatic, but this felt like a very big deal to me.  But get this, who know who else held the tarantula?  Yes B.... but also...



This girl. I STILL CANNOT GET OVER THIS.

This was not even a big decision I looked over at her and was like Are you really going to hold it?  And she nodded and gave me a look like, calm down woman.  She was so zen about it.  Seriously look at her face, she was all, Sup' 'ranchy. She was the only kid who went near that thing.  A day after holding it I said, I still can't believe you held that tarantula!  And she said, What's the big deal?  It's just a large, hairy spider.  Exactly kid.  EXACTLY. Nerves of steel.

You might be thinking whats the big deal?  Lots of kids aren't afraid of spiders and even have tarantulas as pets. What's weird is that this girl still gets freaked out by small spiders.  I have to come kill and/or remove any small insects from the house.  And in fact, while we were on vacation we saw a spider on the balcony--a cool semi-big one.  And she had a mini-freak and proclaimed, great...now I'm going to have nightmares.  Go figure... either way, she's the coolest kid I know.

We also held an alligator, a Burmese python, petted a skunk, a sloth and a timber wolf.






But it should be noted that not all of us conquered our fears on this trip.  Zuzu wouldn't go near the sand.  Sand was like death to her and she avoided it's strange shifting surface at all costs.  You win this time Zuzu.


For us, at this time and season, it was the perfect trip.
High fives.

Friday, March 13, 2015

Special Needs Spotlight || Selena and Michael


Hi Friends, Miggy here.  So my church isn't one of those churches where you raise your hand and yell Amen! but that's exactly how I felt while reading through today's spotlight with Isabelle and her husband Pedro who adopted two children with HIV.  This spotlight is full of education and truth telling.  And while HIV isn't something that typically falls under the term of "special needs" it is certainly outside the parenting norm and something we desperately need an updated education about. Because of the nature of today's post (and you'll understand more as you read through) Isabelle has chosen to keep her family's identity completely private, thus all the names have been changed and there are no family pictures.  Please take the time to read today's spotlight and share it with your family and friends. You'll be glad you did.  

Hello everyone! My name is Isabelle, and my husband Pedro and I are the proud parents of two amazing children, Selena (13) and Michael (10). Both of our children were born in Ukraine and came to us through the miracle of adoption. We met Selena in November 2013 and brought her home in late December, just two days before Christmas. Less than a year later God called us back to Ukraine to adopt Michael. We met Michael in early December 2014, had court the day after Christmas, and came home at the end of January 2015. We’re now in the midst of post-adoption adjustment as we all get used to life as a family of four. Despite our multicultural origins – Pedro is from Guatamala, both kids are from Ukraine, and I’m from rural VA – we’re mostly a typical, fun-loving American family. However, like all families, we have our own unique challenges. In addition to the challenges our children face because of their traumatic pasts, both of our children are living with HIV.


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Miggy:  Isabelle thank you so much for being with us today and for sharing your family’s story. I am so grateful that you emailed because I think this is a very important topic that needs more education and awareness. You have 2 adopted children both living with HIV. Can you take us back to the beginning of this process and your decision to adopt children with this disease? Was it an intentional choice to adopt children with HIV and if so, why?


Isabelle:  From the time I was a small child, I knew that someday I wanted to adopt. When Pedro and I got married, we began looking into the foster-to-adopt process. But despite our best efforts, we had more doors slammed in our faces than I can count. After hearing “no” on every side, we put kids and adoption on hold to focus on our careers, figuring God would work things out in his timing.


Several years later, I felt God calling me to orphan ministry. Because our past adoption efforts had not panned out, I decided to look for ways other than adoption that I could help orphans. I began volunteer advocacy work with Reece’s Rainbow, an organization that promotes and raises money for adoption of international orphans with special developmental or medical needs. In the course of that advocacy, I came across a photo of a beautiful brown-eyed little girl and her younger brother. I knew right away, in a way that I cannot even begin to explain, that these children were supposed to be our children.  I showed the photo to Pedro, and he had the same reaction. At that time, we had no idea where these children were, but we knew we needed to do everything we could to adopt them. We asked the necessary questions, and just a few weeks after seeing their photo for the first time, we committed to adopt both children. Eight months later, we came home with Selena, our spunky, friendly, funny, exuberant, inspiring daughter. Unfortunately, due to a tragic circumstance related to the intricacies of the Ukrainian adoption process, we were not able to adopt Selena’s younger brother, but we are so blessed by Selena’s presence in our family and so glad God led us to her.


Selena’s diagnosis of HIV was truly an afterthought to us and had no bearing either way on our choice to adopt her. When we first saw her picture, we had no idea what her special need was, and it didn’t matter. We of course learned that she had HIV before we made the decision to pursue adoption, but I can honestly say that her diagnosis played no role.


That said, we went into the process eyes wide open. We did our research about HIV before committing. At the time, Pedro worked with a man who is living with HIV, and we took him out to dinner so we could have a frank discussion with him about what it means to live with HIV and what it might mean for us to parent a child with HIV. We also had long discussions with my mom, who was a nurse during the beginning of the AIDS epidemic in the 1980s. We read everything we could find about the care and longterm prognosis of people with HIV. (Project Hopeful, is a great resource.) We talked to the international adoption specialist at our local international adoption clinic. We called our insurance company to make sure we had adequate coverage for HIV medications. We did everything we could think of to prepare for the reality of parenting a child with HIV. But not once did we consider that we shouldn’t go through with it because of Selena’s diagnosis. We knew she was ours, and that was all we needed to worry about.


Our path to adoption of Michael was a bit different since we went into his adoption already knowing exactly what parenting a child with HIV entails. Early on, Selena requested that, if we adopted again, she wanted her new sibling to also have HIV. When we felt God calling us for another adoption, we prayed daily over the children on Reece’s Rainbow who have HIV. Eventually we felt our hearts pulled to Michael. When we found out that he is from the same Ukrainian city as Selena, we knew this was the little boy God wanted us to call our own. Eight months after coming home with Selena, we committed to adopt Michael, and we came home with him just a few months after that. In Michael’s case, I guess you could say we chose to adopt him in part because of his HIV. Rather than his diagnosis being a deterrent to us, his diagnosis is what originally brought him to our attention!


Miggy: HIV has changed a lot of our lifetime. It went from being a death sentence and extremely feared in the 80's to being something that people are living with and managing quite well. But to be honest, I still don't know a lot about the management, life expectancy and day-to-day challenges of HIV. Can you bring us up to date on living with HIV in America today, including HIV vs. AIDS?  

Isabelle: When people hear about "HIV" today, the images that come to mind are tragic photos, most of which were taken in the 1980s, of deathly ill AIDS patients lying in hospital beds. But nothing could be further from the truth. The modern face of HIV instead looks like the faces of my children: healthy, happy, joyful. A diagnosis of HIV means only that a person carries the Human Immunodeficiency Virus (HIV) in their blood. It is a virus notoriously good at hiding out in the body. Even if only a single virus is left in a patient's body, in the absence of medication, that single virus will reproduce and come back with a vengeance, thus the necessity of daily, lifelong medication. AIDS, by contrast, is what happens when the virus is allowed to reproduce at will and attack the patient's immune system. It is a syndrome, the Acquired Immune Deficiency Syndrome (AIDS) to be exact, which occurs when the virus interferes with the immune system enough that the patient starts getting sick from every infection or illness going around. When the immune system is so weak it cannot fight off other viruses or infections, the patient very well could die. But because AIDS is an acquired syndrome tied directly to the number of HIV living in a person's blood, it is a fully reversible condition. If a patient suffering from AIDS is able to begin taking medication and reduces the number of viruses in their blood, their immune system will rebound, coming back just as healthy as before the AIDS incident, making that patient a run-of-the-mill HIV patient once again. That's not to say it's a good idea for an HIV patient to go off meds and deteriorate into AIDS. Many of the infections and diseases people get when their immune systems are so weak are incredibly dangerous infections that often have lasting effects on a patient's health, completely separate from the HIV/AIDS diagnosis. But as treatment of HIV has improved drastically over the years, so has AIDS treatment. In America today, HIV is a manageable chronic condition, and AIDS is a serious but treatable illness.


Isabelle: Medically, living with HIV in America today is easy. To be honest, I deal with chronic migraines, and I have more trouble managing my migraines than either of our children have with their HIV. For Americans living with HIV today, the diagnosis mainly means taking medicine, usually just one pill once a day, and seeing an infectious disease doctor three times a month to check bloodwork and liver function. Selena is down to one pill a day, after taking 11 pills a day in Ukraine, and she couldn’t be happier about it. On her 13th birthday, she finally finished her medications for nutritional deficiencies and was left with just her single HIV pill to take every day. My, what a day of celebration that was!


As long as people living with HIV take their medication every day, the HIV diagnosis has very little impact on daily life. The goal of any patient with HIV is to become “undetectable,” meaning they have so little HIV in their blood as to render the HIV undetectable to even the best of modern tests. For the average HIV patient, simply taking medication every day without ever missing a dose is all it takes to become undetectable or close to it. When the level of HIV in the blood is that low, the HIV diagnosis has absolutely no effect on a person’s life expectancy. What’s more, thanks to the miracle of modern medicine and the huge strides that have been made in reproductive treatments available to individuals with HIV, Selena can someday bear and give birth to children without fear of passing on her HIV to them, and Michael can someday father children without giving HIV to his children or to their mother.


When a person is taking their HIV medication as prescribed, the chance of accidental transmission of HIV to another person is virtually eliminated. In fact, in the entire history of HIV, there has never been a case of accidental transmission of HIV within a normal household setting. In other words, because my children are on medication and understand the importance of taking that medication, and because they understand the risky behaviors they must avoid (namely unsafe intercourse, intravenous drug use, and breastfeeding), they will not ever be negatively affected by their diagnosis beyond needing to take daily medication, and they do not pose a risk to the people around them.



When I think about what all this means for my children – what modern medications have made possible in terms of HIV therapy – I am overjoyed. A disease that would have been a death sentence to them even 15 years ago is now little more than an annoyance. What a miracle!


Unfortunately, good news stories don’t usually make good headlines, and many Americans today are woefully ignorant of the strides that have been made in HIV therapy. Many people refuse to believe that someone living with HIV is not a threat to their own personal health. In America, the stigma faced by people with HIV today is only marginally better than it was in the 1980s and 90s, when HIV was a death sentence.

Miggy: In your email you talked about the stigma your children lived with in their home countries. How does that differ from America? More importantly how have those stigmas and the social scrutiny impacted your children and are you doing anything to help them overcome/deal with those painful memories.


Isabelle:  For people living with HIV in Ukraine, you can ignore everything I answered to the last question. All four of my children’s birth parents died from AIDS. In Ukraine, treatment advances don’t exist, and HIV/AIDS still kills. In Ukraine, people have a very good reason to be petrified of HIV.


Even in America, HIV medication is extremely expensive. Thankfully, America provides numerous supportive programs to help people with HIV afford their medication. (Between our insurance and available co-pay assistance programs, we pay nothing for our children’s medications.) This couldn’t be further from the truth in Ukraine. In May, NPR presented a focus story about the poor state of HIV therapy in Ukraine: Corruption in the Ukraine Robs HIV Patients of Crucial Medicine. The gist of the situation is this: corruption within the Ukrainian medical system takes medication costs that would already be prohibitively expensive and puts them far out of reach of most patients. On top of that, the HIV/AIDS epidemic in Ukraine is one of the fastest growing in the world. In America, the stigma faced by people with HIV is based solely on ignorance. In Ukraine, that stigma is based on ignorance combined with pure terror.


Selena has memories of being barred from interacting with “healthy” kids. Even though HIV isn’t found in saliva, the silverware and bowls for children with HIV were marked with red dots on the bottom, and the children with HIV were only given those chipped and broken tableware and silverware items after they were too badly damaged to be used by the healthy children. Selena has memories of friends abandoning her when they found out about her diagnosis and teachers ignore her because of her status. When Michael’s birth mother passed away from AIDS when he was a toddler, Michael was placed in an orphanage for children with severe mental and physical handicaps, even though HIV is his only “handicap.” The orphanage workers never explained why he had to live by the same restrictions as children who couldn’t walk or talk. Despite the fact that his HIV level was almost undetectable even while in Ukraine, he wasn’t allowed to play any sports for fear he might infect a teammate, which is virtually impossible when a person’s viral load is undetectable.


All of this is in my children’s past, and these viewpoints inform how they view their diagnosis today. The culture of fear, shame, and paranoia that surrounds HIV in Ukraine is extreme. It's a daily struggle to teach them that their status does not define who they are, what they can do, or who they can interact with. Even in America, the stigma surrounding HIV is such that many families with children living with HIV, including our family, choose to be non-disclosing, meaning we have made a choice that our children's status will only be disclosed to those whom we must tell by law. Disclosure vs. non-disclosure is a huge issue in the HIV community, and strong feelings fly on both sides of the issue. After much thought and prayer, non-disclosure is where my family has landed.


Not a day goes by that I am not grateful we made the decision to stay silent about the exact nature of Selena’s special need during our pre-adoption process. While I don't think she would face quite the level of stigma here in America that she faced in Ukraine, it has been amazing to see her relax and grow, confident that people are interacting with her for who she is rather than rejecting her because of a virus that happens to live in her blood. Even after less than a month home, Michael too is already showing the benefits of finally being accepted for who he is – an energetic and rambunctious ball of fun – rather than always being stifled because of fears related to his diagnosis.

That said, it is admittedly quite difficult to teach Selena and Michael that their diagnosis is nothing to be ashamed of while also explaining that only our doctors and closest family members know about it. I’m still not sure I’ve figure out quite how to walk this fine line. It’s something I pray about and think about on a regular basis. Because the stigma surrounding HIV in America is based solely on ignorance, I often feel that nothing will change unless families like ours take steps to educate those around us. But then I remember all my kids faced in the past because of their diagnosis and all of the struggles they still face simply because they are adopted. Perhaps they have enough to deal with by being international adoptees. Perhaps their priority right now should be healing from the numerous traumas locked away in their pasts, both those related to HIV and those that come simply from being orphans. When I’m being honest with myself, I have to recognize that they are dealing with enough; they do not need the added burden of educating everyone they meet.


Miggy:  In addition to being HIV positive, your children were also adopted at an older age. How have your children and you adjusted to this? What would you like everyone to know about adoption and especially the adoption of older children as I believe there are some stigma's attached to that as well?


Isabelle:  Adoption is only possible because of great loss. My gain – the blessing of two amazing children – was only possible because those same two children experienced more trauma, grief, and heartache than most people experience in their entire lifetimes. To ignore that loss is to ignore the incredible challenges my children must overcome to fully accept me as their mother.


My biggest advice to anyone considering adoption, especially adoption of an older child, is to go into it knowing about the worst case scenarios and being determined to stick to your commitment, to stay with your child, even if your own adoption experience ends up mimicking one of those worst case scenarios. Adoption is hard, REALLY hard. The adjustment period post adoption, which usually lasts about a year but can last much longer, feels like a never-ending slog through someone shredding your heart and stomping on your emotions every single day. We’re still very early in Michael’s adjustment to life at home. While he’s doing extremely well considering his brief time home, there are still days when this raw pain is my reality.


The deaths of both parents do terrible things to children. Institutionalized settings do terrible things to children. Loss and grief and pain and culture shock do terrible things to children. My kids are dealing with all that and more. Our parenting style looks nothing like a typical American parent’s parenting style. We are constantly hunting for the underlying cause, the trauma trigger causing a meltdown or the traumaversary (what adoptive parents call the anniversary of a trauma) that is coming up and causing one child to completely lose it. A discipline episode in our house is never about the misdeed alone. It is always about so much more because misbehavior from our kids always means so much more than the immediate action. Pedro and I are constantly reminding ourselves that we cannot react to misbehavior; we must respond: with love, with kindness, with understanding. Only when we effectively practice therapeutic parenting, day in and day out, even when we don’t want to – only then can our kids begin to heal the gaping wounds in their hearts.


All that said, we are incredibly blessed by both of our children. They are doing amazingly well. They are two of the strongest, most resilient people I know, and I admire them both immensely. In Ukraine, children 10 and older must consent to being adopted. Both our kids had to stand in court and face cross examination about why they wanted to be adopted. I couldn’t have done that when I was 10 or when I was 12. At their ages, I certainly couldn’t have faced life in a foreign country, with a family that didn’t speak my language and with parents I barely knew. Selena and Michael have done all those things. They have earned my admiration.


Now that they are both home, they are thriving. They finally have people in their lives to care for them. Selena is doing well in school for the first time in her life. She gladly tells anyone who will listen that she was “stupid” in Ukraine, but in America, because she has parents, she is now “smart.” (So smart that she has made the honor roll every quarter this school year!) Michael is already starting to grow and heal. He is gradually learning how to ask us to fill his needs (what a typical child does) rather than manipulating us to get what he wants (what a traumatized child does). His temper tantrums have already reduced in frequency and duration. Selena and Michael are both learning about God, learning what it means to be in a family, learning what it means to have people who love you even when you don’t love yourself. It’s an incredible experience to watch them grow, learn, and heal. Even with all the bumps in the road, I thank God every day for the gift of my children. I am so blessed.


Miggy:  What are the biggest worries you face for your children?


Isabelle:  Regarding HIV, I worry their diagnosis will cost them friendships and relationships. Even though they are not required to tell anyone other than doctors and relationship partners, these sorts of things have a way of getting out. I worry that the culture of stigma and rejection surrounding HIV in America will never change and that my children will suffer because of it.


As real as those worries are, my bigger worries are for their long-term emotional health and wellbeing. The statistics regarding the long-term success of adopted children who were older at the time of their adoption are not always encouraging. Every time I think about what could happen to them in the future, I am more determined to do everything I can for them now: to show them my love is unconditional, to teach them how to handle anger and fear, to provide them examples of healthy relationships, to help them heal from the traumas in their past. I want my children to be emotionally healthy individuals, and in order for that to happen, I have to do the never-ending work of therapeutic parenting. Their healing occurs one moment at a time as Pedro and I again and again and again choose to respond therapeutically to our children, rather than reacting instinctually.

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?


Isabelle:  Selena is blessed with beautiful olive-colored skin that perfectly matches Pedro’s Latino skin tone, and her facial structure looks very much like mine. Michael also has Pedro’s dark coloring. When people see us together, they typically have no doubt that both kids are our biological children … except that I am only 15 years older than Selena and look even younger than that. Add to that the fact that Pedro is over a decade older than I am, and it makes for some awkward age possibilities. The double-takes we get are quite hilarious! We can almost see the mental math calculations as they occur, followed by puzzled and shocked looks when the ages just don’t add up. If the person we’re meeting is someone who genuinely seems interested or is someone we will see again, I will take the time to explain that we are an adoptive family. But when this happens in a superficial setting, I usually chuckle to myself and walk away.

Miggy:  How can people best approach or respond to your children in regards to them being adopted? Is there something you wish other people knew so as to avoid awkward or hurtful situations?


Isabelle: When people find out our children are adopted, the most common response is that they are “so lucky” to be adopted. Every time I hear this, I cringe. I know that this statement is made with the best of intentions, but it is incredibly hurtful to an adopted child. My children are not “lucky” to be adopted. If they were truly lucky, their biological parents would still be alive, and they would be living in their families of origin. If they were truly lucky, their adoptions would not have been necessary. Calling adopted children “lucky” to be adopted ignores the incredible trauma they have experienced and makes light of the very real struggles they face in learning how to handle life in a new family, new country, and new culture. Just once, I wish someone would instead turn to me and tell me how lucky I am to have them, for I am truly blessed to call them my children. Calling me lucky is much closer to the truth.



Miggy:  If you could say something to a family considering adopting children with HIV, or another family who has children with HIV what would you say?   What would you say to yourself if you could go back in time?


Isabelle:  Don’t be afraid! Thanks to modern medicine, HIV is such a minor concern. Be diligent and do what needs to be done to make sure your child gets the best possible care, but beyond that, don’t sweat the HIV diagnosis. Honestly, if I had it to do over again, I would take at least half of the pre-adoption time I spent doing HIV-related research and instead spend that time working through the training materials recommended by our social worker. The “adoption” part of adopting a child with HIV is much more difficult than the “HIV” part, and pre-adoption preparation is vital to surviving those first few weeks and months with a grieving and traumatized child.


But most of all, I would tell myself to prepare to be amazed. My children have taught me so much about perseverance and determination, about strength and loyalty. I love them fiercely, more intensely than I ever thought it possible to love another human being. I would give anything for them, would do anything for them. They are my heroes.

Miggy:  What is the biggest lesson you’ve learned since becoming a mother to HIV positive children?


Isabelle:  No person is ever defined by one thing, even if that one thing is something others would view as paramount to a person’s identity. I saw the way my children were treated in Ukraine because of HIV, where the HIV label was all others could see. I see the way they are treated here, where very few know about their diagnosis. They are the same children, yet the way they are viewed is drastically different. Take away the defining characteristic of their diagnosis, and people accept them for who they are: strong, resilient, incredible, fun-loving children. I have learned that no one is as bad as their worst aspect, nor as good as their best. We must not judge someone harshly because of their low points or praise someone solely because of their high points. Everyone is a unique conglomeration of good and bad. We must look at the whole person rather than jumping to conclusions about a person’s worth or identity.


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Isabelle, where do I start?  How about "No person is ever defined by one thing..." Amen!  Whether that is religion, sexual orientation, disability, gender or HIV status that is a truth everyone can agree upon. No one wants to be constantly shoved into a tiny box with a giant label feeling trapped by one small part of their entire identity. Thank you for giving us such a great overview of what it's like managing HIV today. I had no idea that it was possible for an HIV positive mom not to give HIV to her baby, or for an HIV positive person not to spread it to their partner.  Yes, so much education and awareness needs to be spread about HIV.  Additionally I love everything you said about adoption--yes you are indeed a lucky mom.  So much truth telling in here, I know I'm going to read this again and again.  Thanks so much Isabelle and so much love to you and your amazing family.  

Can I get an AMEN everyone?  Amazing right?  Again, if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.  

Have such a great weekend!