Friday, July 25, 2014

Special Needs Spotlight || Lily




Hi, my name is Katie and I live in Pittsburgh with my husband Josh and our 11 month old daughter Lily! Lily has a rare genetic disorder called Rubinstein-Taybi Syndrome. She was diagnosed shortly after birth after being admitted to the hospital for severe jaundice, lethargy, and refusing to eat. Today, she is thriving! She is a happy little girl who loves mangos, books, playing peekaboo, and ragtime music. (Weird, I know. LOL) We spend our days at the library, the pool and the park. Lily is the center of our world and I never could have imagined how happy one tiny person could make me.
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Miggy:  Hi Katie!  Thanks for participating in today’s spotlight.  So let’s jump in… can you take me back to the day your daughter Lily was diagnosed with Rubinstein-Taybi Syndrome?   Was it apparent immediately after birth, before or a while later?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?


Katie:  We did not know Lily would have RTS before she was born. My pregnancy was textbook normal. The second I saw Lily, I thought she looked different. I kept calling her my little elf baby. I was insistent to my mom and husband that something wasn’t right, but they both said she’s a newborn, they all look different. However, she was admitted to the hospital at 4 days old with severe jaundice and a suspicion of a genetic disorder, so we couldn’t ignore those thoughts for long. We found out she had RTS when she was 8 days old. I had actually just been released from a separate hospital where I was being treated for postpartum preeclampsia. I was so happy to just be back with Lily after being away for 3 days and had spent that time convincing myself that nothing was wrong with her. When a geneticist walked into the room an hour later, I still wasn’t ready to hear what he had to say. He took so long getting around to actually naming a diagnosis that I actually screamed at him, “Just get to the point, what the heck is wrong with her!?!?” He focused on really weird things, like tiny differences in her nose structure. He did not give us a very clear view of her disorder. He handed us a couple of grainy printouts from an outdated website and wished us luck. When he left the room, I was under the impression that she would be a little short and might have a mild learning disorder, comparable to dyslexia or something. Then, the attending physician came in and talked with us to make sure we were ok. I remember saying something like, “Oh, I’m fine. I can deal with this. The geneticist just said she might need a little extra help in school.” The doctor gave me a weird look and said, “Um, actually, she is likely to have an IQ of 30-50. That’s not even compatible with independent living.”  I. LOST. IT.

I felt my whole world go black. I lost all sense of time or sensation. I couldn’t believe this was happening. I’m going to admit to some pretty terrible thoughts, because I hope other mothers will realize these initial reactions are normal and expected. I couldn’t imagine bringing her home from the hospital. She was just a burden. My life was over. I remember thinking that I would just learn to bear this gracefully. That was what I decided. There was no way I could ever be happy again, I couldn’t love her as I expected. I would just perfect a good outward appearance of acceptance. I know these are terrible things to think, but I couldn’t help it. I’d heard other special needs parents talk about the joy their children brought to their lives and I had always just thought they were lying.


Fast forward a year. I am head over heels, madly, deeply in love with my little girl. I can’t even imagine feeling the way I did that terrible day in the hospital. It was all just so overwhelming and she was so sick at the time. Now, I can’t wait to wake up in the morning to see her again. I am in complete control of managing the medical aspects of  her diagnosis. EEGs and feeding tubes are not scary alien things now, but just part of her life story. She has so much personality and so clearly loves us so much. The doctors made it all sound so bleak, but first of all, the IQ they were all discussing us is not a given. RTS kids have IQs all over the scale, higher and lower. And secondly, who the heck cares about IQ? It doesn’t measure the way she blows raspberries when she’s happy, or how much she loves to turn the pages when we read, or how she loves getting splashed in the pool. Her life is not measured by any numbers; IQ, weight, developmental milestones, or reading levels, just as parenting is not about a “perfect” child, but rather building a happy life with the family you love.



Miggy: Please educate us about Rubinstein-Taybi Syndrome--what are some of the hallmarks and traits of people who have this syndrome?  Are there treatments or medication available for Rubinstein-Taybi Syndrome?
 
Katie: Rubinstein-Taybi Syndrome is a rare genetic disorder caused by deletions on the 16thchromosome. It causes a wide variety of difficulties in affected individuals. RTS children are small in stature, with girls only reaching an adult height of about 4’ 10”. It causes facial abnormalities, such as slanted eyes, beaked noses and a small mouth. RTS carries a risk of blindness and deafness and 90% of children have problems with speech, with a large percentage being non-verbal. Children have global developmental delays, most don’t walk until 3-5 years old and potty training frequently doesn’t occur until early elementary school. Many kids have some issues with feeding, either an inability to gain weight or sensory disorders with the textures of food and many require a feeding tube. Some require heart surgery as congenital heart defects are common. RTS children are also at a higher risk of tumors (some benign) and certain cancers, especially brain cancer or leukemia. RTS actually used to be named for the most prominent feature, that of their broad thumbs and big toes. Their hands are broad with shorter fingers and some kids require surgery to straighten thumbs or toes. What’s interesting is how each case seems to vary so much from child to child. Some may be severely affected with all the aforementioned issues, while others may only have a few challenges and the degree to which each difficultly affects each child differs greatly. What all RTS kids have in common is a huge smile, a joyfulness that just makes you feel warm all over and a happy, easy personality. Lily is always laughing or smiling! We are also very blessed that Lily currently seems to have a milder form of RTS and doesn’t face as many issues as some of our other RTS friends do.


As far as treatment goes, it’s focused on treating specific medical issues, such as a feeding tube for failure to thrive or surgery to correct a tethered spinal cord. There is no overall treatment or cure for RTS.  For Lily individually, the biggest component in helping her is our therapy. She receives physical and occupational therapy a couple of times a week and we will add speech therapy in a few months as well.


Miggy: Explain how Lily's needs affect your day-to-day life?  
      
Katie: When she was first diagnosed, her disorder was all consuming. She was on a feeding tube, she had almost daily weight checks, and a host of doctor appointments each week. Frighteningly, in its most severe form, RTS is only survivable until early childhood. With such a new baby, it took many tests and many weeks to figure out just how severe Lily’s needs were going to be. We had barium swallows, EKGs, EEGs, fluoroscopies, blood work, brain and kidney ultrasounds, x-rays, glaucoma testing, hearing exams, and many, many specialist appointments to figure out just what we were dealing with. I was also in the process of getting her evaluated by Early Intervention and setting up therapy appointments. That took up ridiculous amounts of time and I remember crying more than once because I wanted to be at a story time that morning, not holding Lily down as a tech glued electrodes to her scalp for an EEG.
         
However, as Lily grew and we got test results, we kept getting more and more confirmation that Lily was doing really well. Slowly, specialists started allowing for more time between appointments and some even “dismissed” us, saying we only had to be seen on an as needed basis, not on a regular schedule. So today, we don’t have the drastic requirements as we did in the early days, but RTS is definitely part of our everyday life.
The biggest daily reminder of RTS is her size. Lily is 11 months old, but about the size of a 3 month old. This presents more challenges than you’d realize. She is frequently developmentally ready to do something, but physically, she is just much too small. We spend a lot of the day adjusting her world to her. She sits on stacks of towels to reach the tray in her high chair and I pad the back of her stroller with blankets so she doesn’t slide out. I spend tons of time scouring the internet to find toys she would be interested in playing with, but are small enough to fit in her tiny hands. Her speech is also the biggest area to be affected, so every day we are learning sign language and encouraging sounds and communication. She also still receives Early Intervention services, so we have twice weekly therapy appointments as well as practicing all the exercises they give us to help her sit up, crawl, and attempt walking.

Another way RTS affects us is a way that I’m sure is familiar to any special needs mom. I feel like her disorder makes me hyper sensitive towards her every movement or sound in a way a mom of a typical child might not be. For her, any cough could be the beginning of aspiration related pneumonia requiring a lengthy hospital stay or those cute snuffling noises at night might be a worsening case of sleep apnea that might lead to surgery. It’s hard to not focus too much on what might go wrong and just be present in the moment.                        


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


Katie: I think what worries me the most for her future is what’s going to happen when she can understand when I have to explain her to strangers. I give a variety of quick answers to questions about her size or her developmental delays. After a particularly long day on in public I thought, “My God! Listen to the words she’s hearing about herself!” Rare, disorder, condition, issues, delays, difficulties, syndrome, etc.  I am always conscious that she’s listening and I want to be the first to teach her just how wonderful she is. I want her to know that she’s the best and greatest baby ever, even if that’s not how others always (mistakenly) see her. I try to say things like “Yep, she’s just small”, Or "No, she was just born that way” and then change the conversation so that every interaction we have is not one that highlights her differences.  I just want the world to see her how I see her; perfect in every way.




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?   
   
Katie: Lily has a difficult time with pooping because of RTS related low muscle tone. She can get extremely constipated and when she was first born, for a while she’d only poop once a week or once every 10 ten days, but when she would go, it was EPIC. We were at an audiologist appointment when she was about 3 months old and were sitting in one of the testing booths. It’s completely soundproof with a lot of instruments inside measuring Lily’s responses, ambient noise, etc. I bet you can see where this is going. So there we are, in an almost airtight, soundproof tiny booth with machines measuring every little noise that Lily makes, when my tiny, adorable, little girl suddenly has the loudest, smelliest poop she has ever had in her life. I swear it lasted for at least a minute. The machines went wild, the room filled with a terrible smell, and the audiologist fell off her chair laughing so hard. Every mom claims their kid poops a lot, but we actually have scientific evidence of just how loud and smelly she can be!!!!


Miggy: How can people best approach or respond to Lily?  Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
    
Katie: For me, it is so frustrating to always have to talk to strangers about Lily in public. I know a lot of people say they would rather people just ask questions instead of staring at them or their children, but I find myself wishing that they just wouldn’t do either!  I know that most people are just trying to connect or to share their experiences, but sometimes I would really love to just run into Target without having to hash out her whole medical experience. I think it’s because Lily’s disorder doesn’t have the recognized outward appearance of say, Down Syndrome, that people feel it’s OK to comment on her tiny size or other characteristics that they don’t realize are part of a genetic condition. They don’t realize how hard that can be for a parent to always have their child’s differences pointed out. And I know that sometimes these interactions only last a minute, but sometimes on a run to pick up milk, 20 different people have something to say to us about how Lily looks. 20 extra minutes onto every errand can add up! I love when people just treat Lily like a normal baby and comment on her adorable outfits, or her ever present giant hair bows!



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


Katie: Since having Lily, I’ve really come to a new understanding of “normal." I started hating to take Lily anywhere in public (do you see a theme here with me and being in public?)  because of all the questions and comments. “Oh she’s so tiny!” “Is she talking yet?” “Oh just wait until she starts walking!” For these people, their children crawled on time, walked on time and grew at an average rate. Some people don’t have any experience with children who do not follow the same timeline. I used to be so much more judgmental myself, before having Lily. I’d think to myself, “Wow, that little boy is way too big for a stroller!” or “Why is she feeding her a bottle and not nursing?” Now, after our own struggles, hospital stay, and diagnosis, my whole world is open to this previously (for me) unnoticed world of kids that are just doing their own thing!
    
No matter how a child eats, communicates, moves, or breathes, it is what’s normal to them. Just because Lily has a collection of differences that make up an identifiable syndrome, that doesn’t mean there’s anything WRONG with her. The very first doctor who discussed Lily’s differences with us kept using the word WRONG. There isn’t anything WRONG with how she was born, this is all normal to her and how she was meant to be. Different doesn’t make you wrong.
         
I’ve really embraced my new role as a special needs parent. I’ve loved meeting (in real life or online) other parents and their kids.  I’m amazed at how quickly kids can adapt to whatever life hands them and I’m constantly amazed how Lily always rises to meet whatever challenge comes her way. “Special needs” seemed like such a scary and alien phrase a year ago. Now, I can’t imagine my life being any different.  I wouldn’t trade my ragtime loving, loud pooping, happy baby for anything in the world.


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Katie--this was awesome.  Thank you!  First, I'm so, so, SO grateful you shared those brutally honest first thoughts and fears.  Like you, some of my initial thoughts centered around the word "burden."  It really does feel like your life as you know it is coming to an end.  But I think the key word above is fear.  It is scary at first, and it is normal to be scared... but the love will come.  And that love really does conquer all.  It's amazing.  I also LOVE your poop story.  Scientific evidence--ha!  Lastly, I get what you mean about sometimes wishing you could just not answer everyones questions.  For the most part I have always said it's best to just ask, however there is something to be said for time and place. It's one thing if children ask--I never want a parent to shush their child if they have a question because I feel like it sends the message to their child that something is wrong with my daughter and encourages exclusion.  But adults on their own are a different story... maybe if we've struck up a conversation at the park, or I see you regularly around the neighborhood--but otherwise it can be a tough call.  I know in the past people have felt more confused over these answers of what's best, but I'd say treating everyone else--including children with special needs--with dignity and treating them as you would anyone else is the best bet.  It's a hard distinction to make!  I'd love to hear anyones thoughts on this question--has it made it easier or harder for you to interact with special needs kiddos?  For the record it was meant to be easier!  :)  Thanks again Katie.  That was awesome and I adore Lily's megawatt smile.  

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 great weekend!


Wednesday, July 23, 2014

7 Months


This darling babe is 7 months old.  Isn't she beautiful?  I don't think I'll ever get over this delightful nugget of love and sweetness.  In a role reversal of sorts I believe she was sent to calm my soul, a mama whisperer if you will.  I never knew a baby could actually be a source of stress relief... My tank is refueled daily by our cuddle time and I am so thankful for her presence.

The other good thing about this photo is the wall color.  Remember when I was choosing paint colors for the new house 1,000 miles away?  I was nervous about how this would turn out.  1) We were actually paying someone to paint the house for us this time (which was amazing).  2)  I knew that if I wasn't happy I wouldn't be able to live with the colors and 3) we were painting the whole house.  So the good news is I'm happy with the paint.  In every room.

So this is our bedroom and it's actually a deep blue.  But I love that it looks different in different light--like it actually reads black in this photo while other times it appears to have greenish undertones.  It's nice to look at the walls and feel that sense of contentment and accomplishment since the rest of the house is still a wreck.  We're at the point now where enough is put away that our lives are functional--but now I'm needing to do regular household chores like laundry and dishes,  maintain my sanity with 3 little hooligans running about and actually unpack a box or two a day.  Now that the husband has started his job I'm spinning my wheels at home getting hardly anything done.

So when I sit around taking selfies with the kiddo's and my oldest pulls a face like this:


   I'm like, Yes Love.  That is exactly how mommy feels by the end of the day.

Any tips for expediting this unpacking, settling in process?  I know a babysitter is probably the obvious first choice, I just haven't done it yet.  Any other magic unpacking tricks?  I feel like it usually takes a good year to settle into a new place...sigh.  

PS--come back tomorrow for another great spotlight.  

Monday, July 21, 2014

Alt Recap

One of my favorite pics with one of my favorite people from Alt.  Check out Stasia's blog Thrift Me Pretty.  


*Sometimes a post needs a theme song--so if you want to listen to a song while reading this post, open this link in another tab.  May not be appropriate for work or around little ears.  You've been warned.   


That's right, I'm still gonna recap this conference that happened over a month ago.  I'll try to keep it short and sweet.  But I also tried not to eat 10 cookies just now and that didn't really work out for me, so we'll see.  For those of you who don't know Alt Summit is a conference for bloggers.  Most of these bloggers are design/lifestyle oriented, but the great thing is that it's really geared toward anyone in the blogging community or those who work in related creative fields, like photography, styling, etc.


First, lets talk about the reasons I wanted to go to Alt.  (or... how can I explain it?  I take it frame by frame it...)

1)  Frankly, it looked fun.  Lot's of people from the blogging community I admire from afar who I wanted to meet in real life, talk to and ultimately learn from, all in one place?  Sign me up!  Parties, classes, learning, networking with like minded people = F-U-N.
2)  I don't know...I wanted to go to discover why I wanted to go.  Everyone tells you to go to Alt with some goals in mind--which was great advice and I certainly wrote some goals down.  However, I also went in with an open mind thinking that maybe my goals at the beginning of the conference would change by the end of the conference.  They did.  And they still are.
3)  Opportunity.  I've been blogging for a long time.  I love this space and I will continue to do the same things I've always done which are writing, special needs spotlights, tutorials, art and more writing.  I just want to do it better, especially when it comes to my creative endeavors.  And maybe work with some cool peeps down the road--be it businesses or individuals.  We'll see, but really it was a great opportunity and I wanted to take advantage of that.

So those were my reasons, now for the expectations.  Perhaps my biggest expectation was the overall environment.  I had heard (and I can't remember where) that there was no room for mean girls at Alt, that the founders and organizers very purposefully tried to create a culture of inclusion.  Therefore I was really looking forward to a friendly, inviting conference.  Secondly, I expected it to shine--visually and in all the little details.   I mean these are the women who blog about amazing parties planned down to the last flower and stripe-y straw--surely this event had to showcase the type of beauty and talent.  Lastly, I expected to be worn out, dog tired by the end.


I can honestly and happily say Alt met and even exceeded my expectations.  First I met some AMAZING people.  Mostly women, but there were some dudes representin'.  It's been so long since I've felt surrounded by my people.  The kind of people you immediately 'get' you and who you hit it off with in a few sentences and continue meeting up throughout the conference like you're old pals that you've known for years.  I had decided early on that I was going to talk to as many people as possible, introduce myself, make friends, ask questions, say hi, compliment their outfit, whatever I just wanted to meet as many people as possible.  Mission a-freakin'-complished.  Whether it was someone whose outfit I was digging or a person who just finished teaching a class my motto was 'no fear' and I talked and interacted with any and everyone I could.  And everyone was kind, welcoming and eager to share.

And many other people were the exact same way with me--eager to say hi and introduce themselves.  In fact a few times someone would introduce themselves to me and I'd think, Oh they're probably first timers just like me with not many friends here.  Then later I'd see them actually teaching one of the classes and I'd realize they have a popular blog and they already know a lot of people here.  They were just being friendly, kind and inclusive.  This happened several times.  That was probably my favorite part of Alt--the feeling that everyone was actually here to support each other and that there is room for everyone.  Perhaps I'm painting too glossy a picture, as I'm sure that when it comes down to it there's some competition and I doubt everyone truly loves everyone... but I felt nothing but love.  


The details--yes Alt was beautiful and very well planned and executed.  From the sponsor dinners, to the classes, lounges and parties everything was beautiful.  Additionally there were some great "freebies" to take advantage of--for example you could meet with a graphic designer and a lawyer for free to ask some questions and get some professional feedback.  For free!


OK--enough chit-chat.  Lets look at the pretty pictures.

     photo by Brooke Dennis for Alt Summit


The first night at the Bing sponsored dinner (above)--so much fun!

Below some pics from the second nights street themed party. 




     Just busting a move with Gabby Blair and a few other fly ladies.         Photos by Justin Hackworth for Alt.  


Hanging in the Bing lounge with baby Zuzu who I brought for 1/2 a day.  Honestly having a baby at Alt was fun... someone to hang out with and snuggle (ha!) and instant people magnet.  
Photo by Justin Hackworth for Alt




 Practicing our best stank face with some of my favorite gals and fellow artists--Beth Allen Art and Yellow Bungalow Shop




Of course the big buzz at Alt was Martha Stewart as the keynote speaker.  Martha seems to be a rather polarizing person--you either love her or you don't--but regardless of your personal feelings you have to admire the woman's business savvy, style and what she's done for the art of homemaking.  Fun fact, she did a little Q&A after the interview and I got to ask her a question. And I recorded it on my iPhone.  Oh yes I did.   Watch me ask Martha if she really "does it all" here!

     #4cutegirls  Check out Petite Lemon and Thrifty Littles and again Thrift Me Pretty

OK I gotta go, but you guys I had a great time.  I learned A LOT and made some great friends.  My only regret is that the timing is SO bad.  Going to Alt in the middle of a move has made it hard to follow up, connect and stay connected with many of these great people.  But I still plan on getting it done yo.

My overall rating?  I give Alt 2 thumbs up.  I definitely plan on going again and in addition to networking, marketing, and having fun I think I should make it a goal to lip-sync O.P.P. every time I'm at Alt.

Oh yes I did.


Friday, July 18, 2014

Special Needs Spotlight || Charlie and Ingrid


 


Hi there, my name is Trisha, I live in charming St. Paul, Minnesota. I’ve been happily married to Kent for 9 years now, and humorously parenting Ingrid and Charlie for almost six years.  My children came into the world unexpectedly early, and my sweet Ingrid left this world unexpectedly early a little over a year ago.  The gift of their challenging lives has pushed us to see that the greatest gift the world can give you is the life you didn’t expect.
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Miggy:  Hello Trisha.  Thank you so much for participating in our spotlight today.  I appreciate so much your willingness to share your beautiful family and story with us.  You had twins born as micro-preemies, can you take us back to the day they were born?  Was everything a complete surprise or was there some preparation for what you were about to experience?  And what did you experience?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Trisha:  I was teaching kindergarten at the time the kids were born. We had some issues getting pregnant, but after one round of IUI, we found ourselves preggers with twins. I had a totally boring and normal pregnancy, so when I went into labor during my students rest time at 24 weeks gestation, no one was more surprised than me. My husband met me at home and we drove 5 miles to the hospital, where the babies were delivered within the hour. I remember waking up from surgery and asking if I was still pregnant, I remember how pale and relieved Kent looked when he saw me, he was not allowed in the room during the c-section, which we later realized was because my health was very compromised. I had a placental abruption, more common earlier in pregnancy, but happens often in pregnancy in multiples. Ingrid and Charlie weighed just over a 1 pound each. I remember the first days well, but remember the rest of their 4 month stay in feelings; hope, desperation, fear, anger, calm, rage, contentment. I did not return to work, I lived at the hospital, kent would come everyday on his lunch break. I never counted the number of surgeries while in the NICU, but I know it was over 10. Nicu doctors say the babies will tell you what they are capable of; and every time one of the kids came back from surgery and kept trucking, we hopped on for the ride. Having micro-preemies forces you to face your child’s mortality in very concrete ways. Everything that happens those first months is life-saving, and then transitions to quality of life saving. I sat next to my 1 pound babies and thought about their funerals if they were not able to make it. It felt beyond sad, but shockingly normal in the NICU. When Ingrid passed last year it was a complete shock. In my heart I’ve always known that it was very possible that I would be faced with losing them, but I choose to think that I honor her by listening to her and respecting that she was ready to be done with what prematurity was asking of her body and spirit. 

Miggy:  Preemies, like so many conditions can have a wide range of how each child is affected.  Can you tell us how each of your children was affected?  What were some of their needs both as babies and as they grew older?  

Trisha:  There are five common issues micro-preemies face involving the: heart, lung, brain, intestines, and eyes. Ingrid and Charlie each faced all of them, some resolved through surgery, some 
through medicine, some with time. The kids both came home on a nasal cannula for oxygen, special feeding guidelines, and basically not allowed to leave home unless to see the doctor.  Post NICU the diagnoses are Cerebral Palsy, Hydrocephalus, Developmental Delay and Retinopathy of Prematurity (ROP). Ingrid had a more involved case of CP; she was unable to walk without a walker and assistance, Charlie is able to walk independently with a walker. Ingrid had a more complex case of hydrocephalus, resulting in many  shunt revisions her first year, but stable. Charlie has had one revision complicated by an infection, but one revision none the less. They each had eye surgeries, and glasses (which they both look ridiculously cute in). Charlie also has epilepsy, controlled with meds. They both participated in our districts birth-3 program and attended the early childhood special ed preschool. At times their needs seemed insurmountable and relentless, I often wondered how in the hell the doctors thought we could manage all this, but we did, with our heads down, we plowed through.


Miggy:  Your daughter Ingrid passed away a little over a year ago.  From what I understand despite her medical issues this was a shock to your family.  Is there something you'd like to share about her passing that may be helpful for others to know?  Like were there any warning signs that were only evident in hindsight?  Or perhaps something you've learned in dealing with your grief?  

Trisha:  Ingrid passed away from her first seizure.  It started while she was sleeping, we have no way of knowing how long she was seizing.  She had a major orthopedic surgery 5 weeks prior and had healed like a champ. Charlie had had a seizure the year prior and we got him on meds and it was all controlled; Ingrid had never showed signs.  We found her seizing when we went to get her up that morning.  She was rushed to the hospital, put in a medically induced coma and never woke up.  Her brain swelled and liver was shutting down quickly.  We made the decision to let her have peace. 
The first phrase Ingrid ever put together was “all done”.  She loved being at home with just her family, anything outside of that she wanted “all done”.  Kent and I both felt like she was telling us that she was all done, done with shunt revisions, done with plates and screws in her bones, done with watching other kids run by, done with endless doctor appointments. We will never stop having a relationship with Ingrid, she was a wild spirit, now able to run free.


Miggy: Tell us about your Ingrid.  What was she like?  Do you have a favorite memory?  

Trisha:  Ingrid had a huge spirit that was undeniable to anyone who met her. I used to say to her, “Where did you come from?” Her capacity for love, compassion, and empathy amazed us daily. She was hilarious, silly, affectionate, and demanding. She was crystal clear on what she wanted, and what she didn’t have time for; she wasn’t the biggest fan of the academic time in school, more interested in friends. She was so happy to be with family and friends, hated going to bed for fear she would be missing a party.  

I could never choose a favorite memory, but I can still feel her hug. Her armed draped around me patting my back, head on my shoulder, warm breath on my neck. I can go there in an instant.


Miggy: Like many parents who lose a child you also have another living child to consider who was also born a micro preemie.  What are the biggest worries you face for your son?  
Trisha:  The biggest worry we face for Charlie is that we could lose him in the same way we lost Ingrid. I don’t know If I’ll ever hear him call me Mom, say his own name, or read. I hold onto what he can share with me, and in each moment that has to be enough. When Charlie had his first seizure, I was shattered. How was I going to navigate this? How can I protect him? I love the author Anne Lamott, her words seem to come into my life at the right moments. I was reading a review of her new book at the time, Help, Thanks, Wow. I came across this quote and my soul found relief. “There’s freedom in hitting bottom, in seeing that you won’t be able to save or rescue your daughter, her spouse, your parents, your career, relief in admitting you’ve reached the place of great unknowing. This is where restoration can begin, because when you’re still in the state of trying to fix the unfixable, everything bad is engaged: the chatter of your mind, the tension of your physiology, all the trunks and wheel-ons you carry from the past. It’s exhausting, crazy-making.” Charlie’s first seizure felt like hitting bottom, I wasn’t expecting another diagnosis to add to his list. Reading these words brought into focus for me the terrifying beauty of parenthood; we can’t stop the bad stuff from happening. That’s not our job as parents, our job is to love and support them throughout the waves of their lives. There is so much I don’t know about Charlie’s future, all I can do is assure him that his Dad and I will always be there.

Miggy:  Now that your daughter has passed away, what is the best way people can approach you and your family about this?  Is there something you wish other people knew so as to be more sensitive/helpful as you and your family grieve the loss of your sweet Ingrid? 
   
Trisha:  The best advice I have in this area is to show up.  Grieving parents don’t need to hear that God has a plan or needed another angel.  They don’t need to hear that everything happens for a reason or that God doesn’t give you more than you can handle at a time.  Just show up.  Following a death, don’t put them in the position of having to ask for help or give you a job, they won’t.  Just show up.  A friend of mine from my book club made me a bag of amazing Jewish comfort food, dropped it off on my doorstep, we hugged and she left.  It was like a dab of salve on my wound.  Just show up.  The truth is that parents who lose a child are not the same after the loss.  They are a new version of themselves.  It takes them time to figure it out.  Again, just show up.  I have a few friends who consistently text me to check in.  One friend texts every month on the 27th, the day Ingrid passed.  This is showing up.


Miggy:  Trisha, you have walked a road that most hope never to go down.  From complications of having micro preemie twins to the death of a child.  What would you like others to know about your journey?  Is there something you've learned from all this that you hope the rest of us will take away?

Trisha:  I wish I had some profound answer.  I realized after Ingrid passed that I had never imagined my kids older than the age they were. I didn’t daydream about high school graduations, applying for college, weddings, grandbabies. Because of this, I never got distracted by a life I had imagined for them, I had no choice but to live each day with them in the moment, letting them reveal themselves to us in their own time.


Miggy:  Lastly is there anything else you'd like to share about your family--special needs, loss of a child, love, pressing forward?  


Trisha:  Well, I realize that our story may sound terrifying and like the last thing anyone would want to have happen in their family.  That’s true.  But I can tell you a little over a year out, there’s still laughter and joy to be found.  If in times of sorrow and turmoil, you can turn towards you partner or support system, and not away, you can make it through the darkest of  times.  And you might even laugh a little.

***************

I probably should have warned you all to have some tissues handy.  Trisha, that was beautiful.  I love so much of what you had to say--in particular I love your advice to "show up."  I know I could do this more often in general, asking people to "let me know if you need anything" is probably the least helpful thing to say or do.  The example of your friend dropping off food--yes the food itself was helpful and needed, but you described it as a healing balm.  It wasn't about the food, it was how the gesture made you feel.  Like you said, THAT is showing up.  I also appreciate that although your circumstances aren't what anyone would ever wish for, you know you can make it through the darkest of times. and that there is still joy and laughter ahead.  I know there is someone out there who needed to read that today.  On top of all of that, I loved reading about your children, and the love and joy that came despite the difficult circumstances. Thanks so much Trisha.  Much love to you and your family.  

Oh friends...wasn't that so great?  I love this work.  As always if you or someone you know would like to participate in the special needs spotlight please email me--or have your friend email me directly!--at thislittlemiggy at gmail dot com.

Have a great weekend!



Tuesday, July 15, 2014

Home



Last weekend we ventured to over to the City Flea--a lovely little once-a-month market in a great new-to-us park in an up-and-coming part of town.  With that many hyphens you know it has to be awesome.  And it was.  We walked among the local vendors checking out the wares and whatnot.  And a funny little side story:  As we're walking around doing our thing, some guy gave Lamp a double-take in her power chair and quickly assess that there's no way she was operating that thing by herself.  Obviously she was rolling away uncontrollably and she needed his help pronto!  He jumped into action grabbing the back of her chair trying to stop her.  Only it didn't stop her in the slightest, didn't even slow her down.  I'm telling you that chair is a monster.  We kept saying, She's ok...she's ok....SHE'S OK!  Until it finally registered.  Oh, she's OK.  And he let go while his buddy stood back laughing.  Oh good times...at least he was trying to be helpful.

Anyway, I was pleasantly surprised with some of the beautiful wares--sometimes you tend to see the same stuff at these things, but there were some really beautiful, original goods.  Then we landed at a booth where some t-shirts that caught our eye.  Good design, soft shirts... but mostly the message:

Home.  With the state of Ohio as the "o".

We're still in the transition phase, but I've been surprised how good this move has felt so far.  And honestly, I'm not sure why...I fully expected there to be more uneasiness, even downright sadness.  But I feel good...we feel good.  Our new home, our actual house, feels like an oasis with the large lot and roomy interior.  It's not huge, but we have ample closet space, a garage, a basement for storage and enough space to spread out a bit which feels good.  Driving around town feels good too as I remember why I liked this city in the first place saying things like, It's so green! and I love these old houses.  And this City Flea was a good reminder that while there are plenty of familiar streets and neighborhoods, there is still so much for us to explore.

In a conscious decision to embrace this new life we ponied up and bought us some new t-shirts officially declaring Ohio our new home.    

It's a fitting reminder that as a family one of our favorite songs to play guitar and sing together is Home by Edward Sharpe and the Magnetic Zeros.

Home, let me come home.
Home is wherever I'm with you.
Our home, yes I am home.
Home is when I'm alone with you.


*****
The one thing thing I can't seem to figure out is what is Ohio's identity?  When I was thinking about the other places I've lived it seems like one thing that sort of endears people to those places is their overall identity.  Utah and Colorado are both known for their mountains and outdoorsy lifestyles, Hawaii for it's beaches, surf culture and laid back lifestyle.  Even Texas is known for people who love their state, southern hospitality, cowboy culture, heat, etc.  Any local Ohio peeps want to chime in about what Ohio is known for?  Also, do you think having that sense of identity--whether you relate to it or not--helps build a sense pride for where you live?  

Friday, July 11, 2014

Special Needs Spotlight: Lydia



I'm Michelle, mom to four wonderful and very busy daughters and wife to a hard-working father, Matt.  We live in a world of princesses and dress up!  Our youngest daughter Lydia (14 months) was diagnosed with Medium Chain acyl-coenzyme A dehydrogenase deficiency (MCADD) when she was about a week old.  MCADD is about 1 in 15,000 among North Americans and is a recessive disorder, meaning my husband and I are both carriers.  Essentially, Lydia is missing the enzyme needed to break down medium length fatty acid chains from food into energy for her body.  Because she's unable to break down 6-12 length fatty acid chains, her body runs out of energy more quickly and she can't convert various foods into energy. For example, if she eats spaghetti noodles for dinner, her body can only break down the fatty acids found in the carbs until the chain reaches 12 links in length. At that point, her body has to dispose of the food without getting energy from the rest of the 12 fatty acid links. She can break down simple sugars if they are given to her in that form (like fruit or sweets) but she can't create short chains on her own. If she doesn't eat frequently, gets sick and throws up or has diarrhea, or stresses her metabolism in any way, she can end up in the hospital having a metabolic crisis which begins with lethargy and unresponsiveness and can progress to seizures, severe hypoglycemia and end in death. Currently she is allowed to go 8 hours without eating. When she is an adult, she will be allowed to go 12 hours maximum.  If she is sick, even with a minor illness, that time limit is shortened.  We love our little Lydia to the moon and back!

*************** 

Miggy:  Can you take me back to the day you found out about your daughter Lydia's metabolic disorder?  Was this at birth, or sometime after?  Were there signs and symptoms and how long before you received a definitive diagnosis?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Michelle:  Our pediatrician called us when Lydia was 6 days old, explaining that her newborn screening tests had come back abnormal and her c8 level was really high, and we needed to take her back to the hospital nursery to get some more tests done. I googled it after I hung up, of course, and the first articles that popped up talked about high c8 levels indicating the presence of MCADD which could lead to sudden infant death. I headed back to the hospital ASAP! What started as a phone call ended up with special blood and urine tests, lots and lots of phone calls, a DNA test and a consultation with a geneticist. The DNA confirmed MCADD for Lydia a few weeks later, which we had known anyway because her c8 levels were the highest ever recorded in the state of Ohio since they implemented newborn screening. Just a few days after meeting with the geneticist, she threw up a few times and we got to see what a metabolic crisis looked like at the beginning. I was completely terrified, but my husband, a nurse, stayed calm and helped reverse the crisis before we had to take her to the hospital. At first I was so scared that I'd sleep through my alarm and wake up to a comatose, or even worse, a still little baby. As time has gone on, my worries have eased a little bit. I'm not terrified of MCADD anymore.


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

Michelle: We are very lucky in that MCADD is a relatively easy disorder to manage for Lydia. There are many worse metabolic and other disorders. Day to day is fairly easy as long as Lydia is healthy. Like I said, she's cleared to go 8 hours now without eating. That means I still get up at night to feed her (I set alarms), and will for a long time. If she gets sick (or when she gets vaccinations), we are on high alert. We have feed her every couple hours, monitor her very closely. I am more cautious about her getting sick, so we avoid situations where I know there's a lot of illness (like hanging out with friends who have a sick child, or taking her to the childcare at the gym). We have to do her vaccinations in shifts, because we can't overwhelm her immune system too much.  And of course, I'm always thinking, "When was the last time she ate? What did she eat?" I have a mental timer in my head all day long.


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

Michelle:  We haven't been in the hospital yet for a crisis even though we have had some close calls. So I'm nervous about when a hospitalization will happen, if we'll get there in time, if the doctors will follow our protocol letter, if she'll respond to treatment quickly, etc.  My biggest worry though is about her managing MCADD herself.  I hope we teach her well enough that when she's on her own, she will take good care of herself. I hope she won't pretend that nothing is different about her, because the consequences are devastating.  I worry that she'll endanger her life by trying to be too thin, or engaging in unsafe behaviors that put her more at-risk than she already is. I worry about her accepting that this is a part of her.



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?

Michelle: Lydia has always had very odorous and strange smelling bowel movements. Even as a newborn, her BMs smelled like those of a sick adult. This has led to some hilarious moments in public when Lydia passes gas or fills her diaper and other people around us stare at us like we did it! A few times, we've had people feel nauseated because of the smell, and they have no idea it's coming from our daughter!  It may not be funny to some, but those looks we get are SO funny to us!  It's hard to keep a straight face in church when your daughter is stinking up the room!


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

Michelle:  Because Lydia's disorder isn't physically apparent, we haven't had to deal with this much yet.  The biggest awkward moment is when people want to hold her (because she's so cute!) and I won't let them.  I try to be nice about it, but some people still try to reach for her.  I guess I wish that people would just take me at my word when I say that we try to avoid introducing lots of germs and to please, please don't try and grab her out of my arms or touch her hands or face.  Also, I love to talk about MCADD and Lydia.  Don't be awkward and avoid the topic! If you have a question, ask.  I much prefer people asking too many questions than just saying, "Oh, that's nice....." and then avoiding eye contact.


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 your son/daughter? 

Michelle: Obviously this disorder is very difficult to explain to our other daughters (ages 6, 5, 3) so we have kept it at a simple "she needs to eat frequently and we have to be careful when she gets sick."  However, our oldest daughter and Lydia have a very special relationship.  Lydia frequently prefers her over my husband!  Our daughter will play with Lydia when she's crying, get her snacks when she's fussy and cuddle her when she needs a cuddle. I love this special bond and encourage it, so that Lydia will have someone else besides me to support her in living with MCADD.


Miggy: Are there some preconceived notions you had about having a child with special needs that have changed since becoming Lydia's mom? 

Michelle: I have had some very close friends with special needs daughters so I though I knew a lot more, but I have learned that every child is different. Even within the realm of fatty-acid oxidation disorders, each child's body is affected differently. One child with MCADD may never have a metabolic crisis, and another will be in and out of the hospital all the time. I think one of the biggest things I've learned has been that having a special needs child affects the whole family. This last year has been one of the hardest our family has faced and MCADD has been a big part of that challenge. From my fatigue and stress, to Lydia's more frequent  (and distant) doctor's appointments, to my other daughters having to wait while I feed her again, to my husband who listens to my worries and keeps things running when I'm too tired-- our whole family has been affected. And hopefully we've learned to help each other and rely on each other more.



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

Michelle: I have learned that you can never, ever judge a book by its cover. We all have our struggles and our trials. Lydia's disorder isn't visible, but the stress it sometimes places on our family is incredible. You never can tell what kind of challenge a person is going through, and so the best response to almost every situation is to show kindness and love. A smile or a kind word goes so far on those days where I am worried sick about her, or I've been up every hour through the night.  If people could just be kinder to each other, think about the heavy hearts we could lift! Even if that person's challenge seems pithy to you, it is a real struggle for them.  Every single person needs love and support, even if it seems like they're strong. 

Thanks Miggy!

A few links:  
FOD Support Group: (Support group for fatty-acid oxidation disorders! Over 1000 members!)
Bartel Chronicles: (daily blog of a mom whose son has MCADD)

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Thanks Michelle for sharing your beautiful girls with us today.  I think your last piece of advice about not ever judging a book by it's cover sums up your whole post so well.  Though Lydia looks "typical" on the outside, she is anything but!  The fact that you constantly have a mental timer in your head keeping track of what and when Lydia ate, that you have to set alarms for yourself in the middle of the night to feed her, and asking others not to pick up your daughter to keep her safe from germs--all of these extra worries and stresses that fly under the radar so easily, yet underneath it all lies a very big medical issue that could have a catastrophic outcome if left unattended!  Yeah.  I'd say you are living proof that we should never judge a book by its cover!  Also, I loved what you guys have found humorous in all of this--poop!  Ha!  I bet you never imagined that you and your Prince Charming would bond over something like that.  :)  Thanks again Michelle, your family is beautiful.  

So glad to be returning to doing the spotlight.  Whenever I take these little breaks, it always makes me realize how much I miss it!  We have some good ones coming up in the next few weeks, so stay please check back.  As always 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 day!!  


Thursday, July 10, 2014

The Problem with Pity


Trying her foot at the xylophone.

A scene from the library last week:  A little girl spends a few minutes assessing Lamp then walks up to PSP and says, "I feel so sorry for your sister for missing an arm."  I'm not sure PSP knew what to say, but I think she just smiled and shrugged her shoulders like OK... if you want to.  

Later that evening Lamp said,  "Hey mom!  I've got a good idea for what to say when people say they feel bad for me!"

"OK, what's your idea?"  A little surprised because I didn't think she heard this exchange at the library.

"I can just say, 'It's OK!  You don't have to feel bad for me.'"

"That's a great thing to say."

"Yeah I can just show them my arms and be like 'it's OK, my arms are just different.  I'm not sad.'"

"That's right.  You don't want people to feel sorry for you."

"Nope!"

Besides the fact that my 4 year old is often surprising me with just how much her young mind absorbs, I was struck with the fact that 1) she recognizes what pity is and 2) she does not want that crap.  She might not be able to define it, I'm sure she doesn't even know the word, but homegirl does not want people feeling sorry for her.

I know in this example these words were coming from a little girl who doesn't know any better.  But I hope you understand that it's not about the girl.  It's about my daughter, a girl born with disabilities, who doesn't want people to pity her.  And we have definitely had adults share similar sentiments as well, actually using the term "poor thing" in reference to Lamp.  Please do not ever refer to someone with disabilities as a "poor thing."  Yes Lamp still laments that she can't do certain things, and yes she even asks why she was born this way.  Those are legitimate questions and feelings that she feels.  But she does not want anyone else feeling sad or bad for her.

I'm not sure I ever really understood pity before having Lamp.  Truthfully I still have a hard time defining the difference between pity, empathy, sympathy and compassion--it can be confusing.  As this post states, "these things can interconnect, and even at times, seem interchangeable.  They all have to do with emotions that are born out of other people's suffering, sorrows and tragedies."

But here's what I understand about pity now and why it's so damaging.  Pity looks down on you and comes from a place of judgement.  Pity tells you that something is so wrong with you that it is incompatible with happiness.  Pity assumes the worst.  It seems to me that empathy and perhaps sympathy tend to happen as we listen to others, as we hear why they are sad and respond accordingly, i.e. mourning with those who mourn.  Pity isn't listening, pity isn't interacting, pity only judges.  And that judgement is usually damning.  Of course pity tells you more about the person giving it than the person receiving it.  When you 'feel sorry' for someone that revels your fears, your prejudices and your misconceptions.  Unfortunately pity can still hurt the person on the receiving end.

I posted a Ted Talk a few weeks ago by a woman named Stella Young.  She spoke about the objectification of disabled people and many readers had mixed reactions to her talk.  Some of you thought she was looking to take offense at people who simply meant well, while others of you (a few that are actually disabled) agreed with her perspective.  From what I understand part of her message was that when we expect too little of people with disabilities, we hold them back as a society, and that the biggest obstacles disabled people have aren't the limitations their bodies place on them, its the limitations society places on them.  I think pity plays a huge role in that.  Pity isn't looking to elevate, pity holds back.

In short, pity sucks.  At least that's my take on it.


I'd love to hear your thoughts... Do you feel like you truly understand what pity is and would you care to broaden my definition?  Anyone ever been on the receiving end of that kind of pity?  Is there a difference between feeling sorry for yourself and others feeling sorry for you?  Any other thoughts?  

PS--the Spotlight is back tomorrow so tune in!