Friday, July 31, 2015

Special Needs Spotlight || Ruby



Nathan and I were married in 2005 and we wanted kids right away. I was 26 and wanted to be a young mom! So our 4 kids are all 2ish years apart. Landon is almost 9, Olivia is 7, Henry is 4 and Ruby is 2.  We never expected in that planning to have a child with special needs! Talk about a surprise and talk about busy! Life gets a little hectic sometimes and most nights Nathan and I crash, sometimes without much communication, except for spouting out what the kids needs are or who has to be where and when. Landon plays baseball, loves reading, video games, knows more about animals/nature and more random facts that I can ever imagine, has a crazy good memory and craves one on one time with us. Olivia loves gymnastics, American Girl dolls and matching anything with Ruby. Henry is hilarious and pretty much tells us how life should be lived, loves legos and eating away from home. Ruby has stumped us all. She is unpredictable, even to doctors and the happiest baby EVER. She's completely adored by all of us and we'd do anything for her! You can check out our blog (that hasn't been updated in a LONG while) www.meetrubyv.blogspot.com or follow along on my Instagram account, cferb,that I update often with the usual, daily stuff.


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Miggy: Courtney thank you so much for being here today and for sharing your sweet Ruby and your special needs journey with us. Lets start at the beginning, can you take me back to the day you knew Ruby would have special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?


Courtney: When Ruby was born, we had no idea anything was wrong.  Her pregnancy was just like my others, except that as soon as she was born, I heard, "any second she'll start crying....annnyyy second" and then they whisked her away. My head popped up to them bagging her to get her to breathe. The dr. just kept telling me she was in good hands. I was scared to death, but they then cleaned her off and brought her to me and everything was fine. She had a hoarse little cry that was attributed to her difficult delivery, and she was VERY content. I KNEW something wasn't right, but I ignored it at first. Then my cousin came to visit and as I was saying how great everything was, but I knew in my head it wasn't. I started to cry when I thought about going home, but didn't know why. I was having trouble getting her to feed on me so I asked the night nurse if we could bottle feed her and immediately Ruby turned blue. The nurses kept trying different tricks and told me they'd take her so I could sleep because I must have been a little hysterical that my baby couldn't eat. Then at 3am, a nurse wakes me up and tells me Ruby has been taken to the NICU and been put on oxygen and a feeding tube. It all unfolded from there.  We were then moved to a level III NICU hospital because Ruby was more than they could handle.  We were there for 4 weeks and diagnosed with a Laryngeal Cleft, cataracts, tracheomalacia, hypotonia, Heart defects ASD, PDA and left ventriculations, also a thin corpus callosum. I was crushed. I didn't want to see anyone or talk to anyone. I was a ball of emotions that would lose it any time another dr. came in to talk to me. To the point that they sent in two different people one therapist and one religious head to ask me if I needed to talk to anyone. I started to laugh at that because we live near both of our families and our religious community is so tight. I had offers and people helping out with the other kids left and right. Thank heavens because I needed to be with Ruby at the hospital. It had to have been so hard on my other kids who were 6,4 and 2 at the time.  I really wanted a clone of me to be at the hospital and at home all at the same time. The only reason I survived is because Nathan was with me that entire 4 weeks. He was able to take work off and his hilariousness and positivity is what got me through. I also think it bonded us in a different way than if he had missed out on dr.'s updates and getting to know Ruby. My first question was, "Why us?!?"  His simple response was, "Why not us?" He grounds me.  He was the light Ruby and I needed in that hospital room. There were so many nights we thought we'd lose her. I was scared and he knew it would be ok. I am sure he may have wanted to admit me to the loony bin a few times between then and now.

It's still not easy.  We thought the first year would be the hardest.  Everyone kept telling us to just get through the first year. We jumped for joy when that first year hit (even though we were in the hospital for her 1st birthday), but interestingly enough, every year has been harder than the first.  The problem is not her immunity, but if she catches a cold, it goes straight to her lungs and turns into pneumonia requiring lots of oxygen and antibiotics and unfortunately hospital stays. She has had over 15 surgeries and we still are discovering things we need to do to "hopefully" help her improve her quality of life. But my outlook now is 100% different. We have her with us. We get to watch her grow and develop, even if it is slower and harder than my friends' children. For a long time I mourned the loss of the normal life for her. I still do. I plead in my prayers for Heavenly Father to heal her. But who wouldn't? I would cry at the thought of her future wedding, participating in sports or dance competitions, not being able to eat popcorn with friends at the movies. Now, I can just be hopeful. Heavenly Father is letting us raise her and I am grateful for how she's blessed our family. We've done the most extensive genome testing there is and the results came in with nothing chromosomally wrong.  Ruby is complex, but she's our complex and although we don't seem to get the answers we want, we can't deny the tender mercies that have come our way in the past two years on her behalf.


Miggy: Will you please educate us on Ruby's multiple diagnosis and explain how her needs affect your and her day-to-day life?


Courtney: Like I said before, Ruby is complex. The main diagnois, if there is a main one, would be the cleft and the cataracts because one eye now battles glaucoma and probably will forever. She's never had anything by mouth and had a g-tube placed at 6 months old. She's had her cleft repaired 3 times. The first two times it just fell apart as if there were no surgery ever done. The 3rd time was a year ago this month and it was much more invasive. When it was repaired they put in a tracheostomy, which I was adamant about NOT getting, but we had a few months to think it over and decided it was the right thing to do. It was temporary, just to let the surgery heal. Well, it's now long term temporary. What was to be 2 months has turned into at least 2 years. Her lungs and trachea are just not strong enough to carry the 02 needed when she gets sick. I truly believe that has saved her life more than once. BUT...it also makes life much more difficult. I can't drive alone with her in the car and I honestly can't leave her alone awake for more than a few minutes. She pulls it out. All of her little devices are toys for her to pull of and throw. It kind of stresses me out a little bit because with 3 other kids, there is a lot going on. Thank heavens for our amazing nurse who keeps me sane. It's also hard not having alone time with Nate. We both crave it, but until recently it's been impossible to even be able to date.  And it's easy to say we'll spend quality time together after the kids are down, but honestly we are both up so much during the night we crash as soon as that happens! And let's be honest. Having a perfect marriage is hard, but it's especially hard having a special needs child. There are so many things to come together on as well as our individual responsibilities and so many needs and wants that get ignored because there is just not time in the day or the extra energy to do them.




Miggy: What are the biggest worries you face for Ruby? And conversely, what are your hopes and dreams for Ruby?


Courtney: I spend a lot of time worrying about Ruby. I know I probably do more than Nate. I sometimes ask questions he doesn't want to think about. We have no idea what the future holds.  She's been tired a lot lately and now will go in for another surgery on Aug. 17 to repair the ASD.  The hope is that it'll prevent so much fluid from getting into her lungs and give her a bit more energy. But no one really knows if it'll work that way. She's kind of her own little puzzle, but she's amazing and she's a fighter. The things she's pulled herself out of and fought for are incredible. Once she started sitting up at about 18 months, she's progressed so much! She is now working on weight bearing so she can eventually walk. She's a strong little soul. They say their muscles are weak with hypotonia, but she is STRONG. She just doesn't know how to use the muscles she has.  With her therapies she's learning and she gets so excited when she figures things out! She does a little princess wave and expects a cheer every time she accomplishes something. It's so cute! I do worry more as she gets older. We get a lot of stares right now. I worry I can't always protect her from that. I worry people will make fun of her and hurt her feelings. That's a worry with all of my children, but especially her because she has so much that sets her a part. She's the happiest, most loveable soul and I don't ever want her to lose that. My dream is that of course she'll be healed...but that she'll be able to experience life to it's fullest. Maybe my fullest and her fullest are different, but I want no regrets.  I want her to do anything and everything she wants to do and it's our goal to help 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 situations?  


Courtney: I can't tell you how many comments we laugh at. Most of them come from kids which are so endearing. I feel like adults should know better, but a lot of them don't. A lot of people ask me if she can actually see out of her glasses. Which is hilarious because I want to say, "Can you see out of your glasses?" haha.


We had a friend's little boy ask all about Ruby's trach and then he finally concluded with, "Well, at least she's not dead!"  I had to say, that's a good point! I am glad she's not dead!


She wears AFO's to help give her support for standing up and I have had a few people say, "Those are interesting shoes, where did you get them?" They are always so shocked that they are customized to her feet.


I honestly know people aren't trying to be mean. People do mean well, they just really don't know what to ask. A woman at a park came up to me and asked me if she could ask me some questions and then asked me how she should teach her kids to ask questions. It was so refreshing, because I really do like to talk about Ruby!  I breathe this stuff in and out 24 hours a day!  Ask me anything!  The most refreshing questions come from kids.  They have no reservations and I love it.



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


Courtney: I think what I have learned is to be friendly. Ruby is so loving. She blows kisses at everyone she sees that talks to her. She waves to them as they walk away.  I am so touched by people that talk to Ruby directly and ask questions because they really want to know!  Staring is hard. People know they are stared at. It's not discreet and it's hurtful and it doesn't help inform at all. I am trying to teach my kids, as shy as they all are, that people want you to be friendly. No one wants to feel alone. It's definitely gotten me out of my comfort zone. I am so much more aware of people around me and I am thankful for that.





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 Ruby?


Courtney: I could never have imagined the love Ruby's siblings have for her. The second she enters the room, she has all the attention. There is not one ounce of malice or frustration for her.  And our time is not shared equally. Each of our kids have take turns showing us (usually by misbehaving or having outbursts) that someone needs more one on one time, and sometimes it's more than we can give,  but overall, there is so much more compassion and love because of her.





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


Courtney: What haven't I learned?  Haha. I have learned people are good. People want to help and they want to pray for Ruby. Ruby has touched so many hearts and we have been blessed so much by compassionate people. I have learned this life is not up to us. We can want and have desires, but it's all in Heavenly Father's plan and time frame. I have learned to have faith and know that we were trusted with this little girl. I have learned to trust lots of people to care for Ruby.  Sending her into surgery gets harder and harder as she gets older. They take her back to sedate her and I cry my eyes out. I know she'll be taken care of, I know she is loved, but it's hard. I have learned to be compassionate. Everyone has trials and life is hard. For a long time, and I still do occasionally, see kids Ruby's age and wish she could run and play and talk like they do.  I don't think I will ever have moments where I don't wish that. But I am brought back and flooded with the little things she is doing. My love for her grows every minute of every day.  I often ask why she has to deal with all these things and why more and more complexities unveil themselves as time proceeds.  I may never know, but I do know she's the cutest, happiest, most perfect little soul and she's perfectly placed in our family.  


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Thank you so much Courtney--and seriously there is something about that little Ruby, you can just see the light shining from her eyes! I love that you said, "I've learned that people are good." YES. Somethings are really hard like stares and rude-isn questions from kids, but I remember being really worried about our interactions with the general public on a daily basis and was pleasantly surprised to see most people treat our little baby with kindness and smiles just like any other little baby. And I love hearing how amazingly great your husbands support was for you during those first daunting weeks. I really love that his response to your question of why us, was why not us? That's life in a nutshell and really, aren't we the lucky ones? Thanks again Courtney and give that sweet little Ruby-cakes a hug from me. Best of luck with her upcoming surgery!

As always you guys, if you or someone you know would make a great spotlight please email me--or if you know a friend please have them email me directly--at thislittlemiggy at gmail dot com.

Have a fantastic weekend!
XO
Migs

Tuesday, July 28, 2015

Tiny Cheerleader


It's official.  Lamp is a cheerleader.

But first, a story...

Last week we finally had a backyard campout that we've been promising the girls all summer.  The tent was set up, a fire was lit and they got to stay up way past their bedtimes. And then the cherry on top--the fireflies came out. I ran and got a jar for PSP and I to collect our fireflies in. When we finally had about 5 all together Lamp said, I want to catch some fireflies too! I want to catch some fireflies too! 

My mom heart gave a pause as I wasn't sure Lamp would be able to catch any fireflies. But of course I wasn't going to discourage her, so I got her down from the swing set and put her in her chair and away she went in search of her first victim(hehe). PSP and I went to the jar to release our glowing captors when suddenly I heard, "I CAUGHT ONE MOM!  I CAUGHT ONE!"

Sure enough, Lamp had a little firefly in her toes. I thought she squashed the poor guy to death, but when she opened her toes, he was just fine. Good job Lamp! I half laughed in genuine surprise. We put him in our newly empty jar. No sooner had we put him in than I heard again, "MOM I GOT ANOTHER ONE!"  This time, somehow between her arms she caught a little guy. When she opened her arms he stayed put and started crawling around her arm and I snapped this perfect little picture of the glowing bug against her skin.


Before 5 minutes was up she had caught 3 fireflies--2 in her toes, 1 between her arms.

The problem of being born with a typical body is that even after 5 years of a mothering a limb different daughter sometimes I still underestimate her physical abilities. But the benefit of Lamp being born Lamp is that she only sees possibilities and what she can do. It's like she was born with blinders on when it comes to limitations. She can honestly do almost everything other kids typically do. Sometimes this means doing things in her own special way--like when she jumps, she's not actually standing on her feet and jumping off the ground like other kids, but she's jumping in an authentic, Lampy way. And make no mistake to Lamp this is jumping. Other times there is no question of perspective as she's actually doing the the thing everyone else is doing limbs-be-damned! In this instance she's actually catching fireflies. Either way I want you to understand she is doing it--she is doing the things the rest of us are not sure she can do. That is the amazing way her mind works. And oh my gosh what if we could all do this--focus on our abilities first and be mostly blind to our deficits? What if we all took our God-given talents and abilities and did our best in our own unique way, without worrying what we look like or if someone else thinks we can do it, all the while smiling ear to ear because we know that we are doing our best and that is enough? We could move mountains.
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As Lamp has watched PSP go to dance, start violin lessons, go to day camp and so forth she has longed to have an activity all her own. And then cheerleading presented itself as a possibility. As a former (birkenstock wearing, hippy-ish) high school cheerleader myself--a paradox that has always felt strangely appropriate for me--cheerleading was not what I was planning on as Lamp's foray into extracurricular activities, but with the encouragement of her therapists and the cheer coaches themselves we decided to go for it. Lamp has been really, really excited.

Her father and I have been really, really nervous.

Again we're not nervous about her limitations or what she can or can't do. When it comes to Lamp our nervousness and fears almost always apply other people--will they accept her, will they be kind, will they teach their kids to be accepting and kind? As we walked into her first practice--a 2 hour long cheer camp for K-6--I could see and feel the eyes of a gym full of girls turning to watch Lamp in her power chair as she took her place in the front line. With their collective stares focused on my baby I could practically see thought bubbles above their heads with all sorts of questions and comments. I didn't have to imagine these comments with a few girls as they turned to each other to whisper, grabbing their arms above the elbow. Moments like these are the ones we special needs moms brace ourselves for. As I sat there I tried as hard as I could to absorb all that energy and attention being directed at her like a giant sponge and then filter it back out at Lamp as only positive energy giving her my biggest smiles of encouragement.

I knew if I could just get in front of all these kids, introduce Lamp and quickly run through an explanation, talk about her differences, let them ask a couple questions, that these looks and whispers would all disappear. (And in fact this is usually what we do with a new class and this is what we planned to do with her new cheer squad, just not this day.) In general this is what I wish I could do with the world.  Just walk a few paces ahead of Lamp, say a quick spiel, let people ask her questions and then everyone moves on.  But I can't. At least not like that.

A while ago I realized that if I'm constantly focused on the outside world, trying to reach everyone else before their stares, rude comments or mean behavior affect my girls it will be like trying to bail water out of a sinking boat without taking the time to actually put lifejackets on my kids. Because no matter how fast I scoop the water out, if they don't have lifejackets on they will drown. So I try to focus inward first--give my kids their lifejackets so to speak--and then focus my attention outward on the rising water.

So as Lamp sat with her power chair in the front row, following instructions, yelling out cheers I smiled and clapped and showed her an encouraging thumbs up each time she looked over at me. Next to that God-given inner voice that only sees possibility, her family's voice is the one that counts the most. This is one way I can giver her a life jacket. And while I can't stand in front of the world shouting out awareness as we go, this is exactly why I write this blog. This is how I spread awareness, this is how I hope to impact the world around Lamp for the better. This is how I bail out the water.

To be honest I don't think I'll ever settle into a super comfortable place with this cheerleading gig. Yes her squad and the parents will come to know and accept her, but each week as she cheers for a local pee-wee league football team we will be be playing a new team each time.  New kids, new parents and every time B, PSP and I will be there to help absorbs those inevitable stares and whispers and give it back to her in smiles and cheers of our own.

It helps to take a cue from Lamp and remember her confidence as we were driving to her first practice.

"Mom there might be some moves I won't be able to do that well..."
"Lamp, you just do them the best way you can."
"Yeah. I'll probably be able to do them all."
I smiled, "Yep, you probably will."

That's my little cheerleader...the bravest girl I know.


Friday, July 24, 2015

Special Needs Spotlight || Nathanial




Hi Miggy!  Thank you so much for having us on your spotlight!  My name is Katie Yohe, and I have one son, my most cherished blessing, Nathanial.  Nathanial just turned 3 in May.  We are also extremely lucky to have my  mother, Bonnie, living with us. Nathanial was born a healthy, beautiful baby, but at 4 weeks old he stopped breathing. He was diagnosed with ALTE (acute life threatening event), apnea, and severe reflux. He spent the next 15 months on heart and apnea monitor, along with multiple hospitalizations and a second ALTE. I realized we were dealing more with reflux once he started solids, and was diagnosed with FPIES (food protein induced enterocolitis syndrome). Our lives were again turned upside down when Nathanial was 18 months old and suffered a traumatic brain injury, resulting in a myriad of problems. Nathanial is an absolute warrior. If he falls down 7 times, he gets up 8!


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Miggy: Katie, thank you so much for being here today and sharing your son Nathanial with us. You are in a unique position of having a child who was born with various medical needs and then having that same son suffer from a traumatic brain injury causing a whole new set of issues. So lets start with Nathaniel as a baby and the conditions he was born with.  How old was Nathaniel when you realized something wasn't quite right?  What were the warning signs and symptoms and how quickly did you receive help and/or a diagnosis.  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Katie: The first time we knew something wasn't right was when Nathanial was about a week old when he would projectile vomit after every feed. I took him to the pediatrician and he was diagnosed with reflux and put on medication. They told me it would improve with age. At 4 weeks old while at the grocery store, Nathanial stopped breathing, turned blue and his eyes fixed upwards. He was rushed by ambulance to the ER and admitted, where they found that he has frequent episodes of apnea, periods of bradycardia after eating, and believed those two things were related to the episode we witnessed, and diagnosed the incident as an ALTE (acute life threatening event, or near-SIDS), and milk-soy protein intolerance (MSPI). He was placed on an apnea/heart rate monitor and we were discharged several days later. He had a second ALTE at 3 months old requiring hospitalization, and many, many days and nights on edge with his monitor constantly going off requiring stimulation to get him to breathe. It was a terrifying 15 months.  

At 6 months old we attempted to start solid foods. I still remember feeding him his very first food--carrots. Within 15 minutes his face was covered in a rash, and within 2 hours he was violently vomiting. We hoped it was a virus or a fluke and just avoided carrots. Unfortunately that wasn't the case. Every food we tried he vomited and had severe diarrhea, many times to the point of dehydration and shock. At 9 months old we thought he caught a stomach virus, and due to dehydration we ended up in the ER several times. By the 3rd time he was admitted. It wasn't a virus. It was FPIES (food protein induced enterocolitis syndrome). His body was in a histamine overload and was fighting itself. He had intussusception of his intestines causing a bowel obstruction due to enlarged lymph nodes, he was urinating and pooping blood, his kidneys and liver were fighting to keep up as his body continued attacking itself. After 2 weeks in the hospital, having an NG tube, eliminating all foods, multiple tests, CT scans, colonoscopy, endoscopy, etc., they determined that they would try a course of steroids. And God willing-it worked! My sweet baby, that dropped from a healthy 20lbs down to just under 13lbs started fighting back, and like this little warrior always does, he won! We were forced to eliminate solid foods, and keep myself on an elimination diet due to breastfeeding to get Nathanial to baseline and gaining weight again  By 12 months he had one safe food, and now at age 3 he has about 12.

When Nathanial was first diagnosed, I was terrified.  I was afraid to step away and use the bathroom. I lived in constant fear. Anything involving food was a nightmare. Play dates were basically out of the question, as the few we tried ended in allergic reactions. I was also mad.  And frustrated. Why my baby? I definitely went through a grieving period. Now, it is just part of our daily life. We are lucky that he has more safe foods now, and that his weight is in a good range. He does still rely on breastmilk for nearly all of his nutrition, as he only eats about 200-500 calories a day in solid foods. I haven't really known any different, so we just go with the flow.



Miggy: Fast forward to when Nathanial is 18 months old and he falls and suffers from a traumatic brain injury. What happened and how quickly did you realize this was going to change your life?

Katie: This day continues to haunt me. I have so much anger and bitterness still. Nathanial was visiting his dad's house, and unfortunately was left unsupervised briefly. Nathanial fell backwards down the stairs. He was acting fine initially and was consolable. It was several hours later that I knew something was seriously wrong. I work as a paramedic and know the signs to watch for, which is why I didn't initially rush him to the ER. Within hours of the fall Nathanial was acting lethargic. He fell asleep in the car, and was difficult to rouse. Even picking him up out of the seat he didn't flinch. I immediately took him to the hospital, where he was diagnosed with an intracranial (parenchymal) hemorrhage. He was taken by ambulance to a larger children's hospital to be evaluated by a neurosurgery team. Luckily the bleed didn't continue to progress, and we were discharged on the second day. When we got home I realized he wasn't walking right, and after another ER trip he was diagnosed with post concussive syndrome. He had some "staring" episodes but slowly he got back to his normal self.

Fast forward to when Nathanial was 32 months old (14 months out from the TBI) and other symptoms started appearing. He was having a harder time sleeping and having jerking episodes at night. His staring spells increased, and then he started having what we know now are myoclonic jerks. He had an MRI and EEG in March which confirmed our fears of epilepsy, and showed deposits in his brain from the previous hemorrhage. In April, he had his first of multiple tonic clonic seizures. He has not had a seizure free day yet. On an average day, he has anywhere between 6 and 30 episodes when he is awake, and 15-20 overnight. His doctors haven't found the right medications for him yet. He has 7 types of seizures--absence, myoclonic, nocturnal, tonic clonic, atonic, tonic, and complex partial. This month his neurologist brought up that she believes he has Lennox Gastaut Syndrome, which is a combination of intractable seizures, developmental delays, autism like symptoms and behavioral problems. Nathanial has deteriorated more in the past 2 months than we have seen altogether since the injury. He has trouble walking, hypotonia, feeding disorder, mixed development disorder, and sensory modulation dysfunction. He was just fitted with orthotics to help with stability, and was also fitted for an adaptive stroller/wheelchair.

I think it was really in March of this year that I realized this was a completely life changing injury. I thought we were one of the lucky ones initially after the TBI. Unfortunately, that wasn't the case. I think a part of me was in denial, and he would have had a diagnosis of epilepsy sooner had I realized the staring spells were seizures. Nathanial's father is still in denial, which I think is partly due to the nature of the injury. I'm hoping with time he will be able to come to terms with the new normal. The past couple of months have been the hardest and I'm still coming to terms and learning how everything is affecting our lives. I don't know what the next week or month will bring.

Miggy: Will you explain how Nathanial’s needs affect your day-to-day life, both from the allergy/FPIES/ALTE/Speech delay point of view and also from he TBI point of view?  Do you even think of them separately, or do you approach it more holistically as "This is just Nathanial and this is who he is."?   
                                                   
Katie: Wow that's a hard one. The diagnosis of FPIES and allergies have taken the back burner. I still carry epi pens and benadryl everywhere, but it has just become our normal. I am still that paranoid mother when we are around anyone eating though! His ALTE seems so long ago, and although I can feel the fear like it was yesterday, I guess so much has happened since then that it hasn't been a worry for us anymore.  What affects our days the most are the TBI and developmental delays. His speech has almost caught up to be age appropriate. Nathanial eats very little solid food, and can't use a spoon or a fork properly yet, so the food he does eat, he either picks up with his fingers (only dry crunchy food), or I have to feed him with a spoon (the rare coconut yogurt he eats). Our days start and end with a ritual of medications, which almost always involve some form of bribery because they taste awful. His behavior has been greatly affected and he has frequent meltdowns, and all of his emotional responses are magnified. He cannot sleep alone due to the frequency and severity of the seizures due to the risk of SUDEP (Sudden unexpected death in epilepsy), and he wakes frequently, which means neither of us get good sleep, and I'm frequently laying in bed awake with him from 7pm on. He can't sleep without medication to make him sleep. Going out in public means wearing a pressure vest (on really hard days), dealing with the stares and harsh words from people about his behavior. He also wears a helmet to protect his head due to the seizures, and because of frequent falls. Everything we do has to be done on a visual schedule or he gets very dysregulated and upset if we aren't doing things in order. We spend a huge part of our time at therapies and doctor appointments. Because of his behavior problems and such frequent seizures we are limited to very few play dates and interactions with other children which makes me sad. I'm struggling internally with the TBI because of anger. Because it most definitely could have been prevented. I'm working on it though. In the end, this is Nathanial, and no matter what he is still my perfect little boy. I'll be honest that I'm still grieving our previous life.

                                                 

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

Katie: My biggest worries are seeing him regress. I'm afraid of the diagnosis of Lennox Gastaut Syndrome, but I think his neurologist is right.  For the doctors not being able to find a medication or treatment that will help him. That his seizures will continue to worsen. I already know that he will be in an adaptive stroller/wheelchair at least part time and I'm coming to terms with it. I worry that he will struggle in school. I worry he will have a hard time making friends because he's different, although he really does have the most captivating smile and personality, so I hope children (and adults!) can look past his disabilities and see how amazing he is. I'm trying not to worry about the extended future, but sometimes it gets me when I'm having a hard time. Will he ever drive? Will he ever go to college? Get married? Have children? For now, I'm just focusing on him doing well in early childhood preschool and hopefully making some friends!    


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: I think it's amazing how Nathanial is dealing with everything.  He was super stoked to get his helmet. He is obsessed with Thomas the train, so he calls it his Thomas helmet.  Everywhere we go he asks anyone he sees, "Do you like my helmet?!"  It's almost always the things he has to say that make the situations funny and easier to deal with. When he was fitted for his adaptive stroller/wheelchair, he said "It's my super stroller!!! It's THOMAS blue!!!"  He was quite disappointed that his orthotics don't come with Thomas so he had to pick a different design!


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

Katie: I think just treating him like you would any other child. He gets a lot of stares, whether it's because of the helmet, or because of a meltdown, or because of a seizure creating a scene in public. Nathanial at this point doesn't notice the stares. He doesn't notice the hurtful words. He doesn't understand when someone is making fun of him, so I thank God for that.  I'm the one that gets upset over it. We even had a lady yell at us because we had a stroller in a zoo exhibit that doesn't allow strollers. Not a single person stuck up for us, even knowing looking at him that he has special needs. I wish people would just engage with him. He's very social! I wish they would ask questions instead of just staring or making comments to each other, usually loud enough that I can hear them.

I want people to know that it's okay to ask questions!  It has become a passion of mine to spread awareness, especially about traumatic brain injury and epilepsy.

I want people to know that we don't want pity. There are times when a helping hand would be awesome, like during a meltdown at the grocery store, or when he has a seizure in public.  Just ask if you can do anything. Offer to head off the crowd of people. Offer to get a pillow or something for under his head. Friends and family to offer to grab something from the store, drop off a meal, or send a card to brighten his day.

Most of all I want people to know how blessed I am to have Nathanial as my son.  He is the absolute light of my life, and he would bring so much joy to so many people if they just let him.

This is his page on facebook, where you can follow his story and see his videos, and hear his precious laugh: Nathanial's Story. He also has a page for fundraising at Nathanial Strong! Fighting against traumatic brain injury.


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

Katie: The biggest lesson I have learned is to never give up. Never give up hope, never give up fighting, and never give up believing. God has a plan for each and every one of us, and in the end God's plan is perfect, even if it's not the path we thought we were going to take. I have learned that to get what your child needs, it might be an uphill battle, and you have to be your child's biggest advocate and supporter. I have learned to be grateful, and to celebrate the smallest of accomplishments. I think that is a blessing that special needs parents have that a lot of other parents don't. We celebrate when Nathanial even smells a new food. We celebrate when he can run 10 feet without falling. We celebrate every day that he doesn't have a tonic clonic seizure.

I have learned to be thankful for every single day. Of course I still have days that I cry, that I don't want to get out of bed, and that I'm upset with our situation. Nathanial has overcome so much, and has had so many scares where we didn't know if we would have a tomorrow with him. But for now, we do. It's never guaranteed. And we try to make the most out of every day, even if that just means extra snuggles!

I have learned that family and friends are everything. I don't know what we would do without my mother being here to help with Nathanial. I have lost a lot of friends since Nathanial's injury, and even more have distanced themselves, although not completely lost. When you find a good friend, you grab on and never let go! Finding online communities with families that are going through similar struggles have been something that have helped considerably, and I am so happy to be a part of their community and to call them my extended family.

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Katie, you are a warrior mama plain and simple. I admire you for being such a strong advocate for you son--so important!--and for never giving up. You shared so many wonderful insights and I was moved by your complete honestly about your anger and occasionally wondering "Why him?" I really like what you said about how great it would be if people offered to help you in public. Sometimes we're afraid to step on people's toes or we feel as though we should just mind our own business, but a sincere and kind offer of help is something most of us would welcome. Even if we refuse, the offer itself is a show of kindness that can really do a lot to lift someone's spirits. Thanks for reminding me to be more brave and certainly to reach out if I ever see a fellow special needs mama who could use a hand. And I love that little Nathanial is such a fighter and has so much natural spunk and positivity! You are truly lucky to have each other. Thanks again Katie and God bless you and your sweet family.  

Thanks again for everyone for your support in the special needs spotlight series!  I couldn't do it without all you amazing readers sharing your stories and encouraging your friends and family to share them as well.  If you or someone you know would like to participate please email me--or have them email me directly--at thislittlemiggy at gmail dot com.  

Thanks and have a fantastic weekend!
XO 
Migs

Thursday, July 23, 2015

Basil Infused Brazilian Lemonade



I love Brazilian Lemonade and used to make it by the bucketload back in college when I was a bartender at a popular Brazilian restaurant. I've posted this recipe before, but this time I also infused it with a little basil and it is delicioso.  Brazilian lemonade is really easy and it also utilizes my favorite secret ingredient of all time--sweetened condensed milk, aka nectar of the gods.

Here's what you need:
6 limes (7 if they're small)
2 cups sugar
1/4 cup sweetened condensed milk
1 bunch of basil
6 cups water

First we're going to make a basil infused simple syrup.  Over the stove heat 1 cup of water with 1/2 cup of sugar.  Add a bunch (9-10) basil leaves.  (Honestly, I felt like it could have stood to have more basil flavor, so add a lot of leaves!)  Simmer on the stove until sugar is dissolved.  Remove from heat and let stand.

Next, I must address the obvious question--why do we use limes if it's called Brazilian lemonade? Apparently in Brazil they don't differentiate between lemons and limes. My other favorite explanation is when we were living in NYC and a friend of ours asked the grocer where the lemons were.  Some random man sidled up next to her and whispered loudly in her ear, "In the ghetto, lemons are GREEN."

So cut your green lemons in half and then perhaps in quarters if your blender is not super powerful.  You're going to do a half-batch at a time.  So in the blender add 3 limes (cut in half or quarters), half of your basil syrup (including the basil leaves), half your sugar and sweetened condensed milk.


Blend up in the blender really well until it's all just a fine, juicy pulp.


Strain the pureed lime concoction over a bowl/pitcher.

Then take two more cups of water and pour over the rest of the pureed lime mixture.  Then press down with a spoon on top of mixture to get all the sweet lime goodness into the bowl. Remember do this again with the remaining 3 limes and ingredients.


Enjoy!


*****
6-7 limes
2 cups sugar
1/4 cup sweetened condensed milk
1 bunch of basil
6 cups water

1.  Start with a sweet basil simple syrup by mixing 1/2 cup of sugar with 1 cup of water and a handful of basil leaves simmering over the stove.  Bring to a low boil, remove from heat.
2.  Cut all limes in quarters then working in two separate batches add 3 limes (quartered) into the blender with 1/2 of basil syrup, 1/2 of remaining sugar, and half of sweetened condensed milk.
3.  Blend in blender until it's a fine, lime-y pulp.
4.  Stain mixture over bowl/pitcher.  Take 2-2.5 additional cups of water and pour over lime pulp into bowl/pitcher.  Repeat this step with remaining ingredients.

Enjoy!

Monday, July 20, 2015

Miggy's Music Monday


It’s a well documented fact that I love No Doubt. A less well known fact is that my favorite No Doubt album is Return of Saturn. Years after their break out hit-maker Tragic Kingdom, Return of Saturn was a rather unexpected come back album. A definite departure from their signautre ska sound Return of Saturn has a strong 80’s new wave influence. A handful of songs off the album were hits you may remember like Bathwater, Ex-Girlfriend, Simple Kind of Life and New. One reason this album really spoke to me was that many of the songs lyrics were all about wanting to settle down, get married and have kids. As if I didn’t already love the fact that Gwen was this super hot chick fronting an otherwise all male band, she also wasn’t afraid to be a completely vulnerable and relatable, regular girl. And if you ever watch their VHS Behind the Music episode the big band 'trial to overcome' so to speak isn't drugs and alcohol which is usually the case, but a break-up between Gwen and bassist Tony Kanal. Being a single, 20-something, Mormon girl when this album came out you can imagine how relatable this all was to me!  Favorite tracks to check out are Marry Me, Magic’s in the Make Up, Home Now, Dark Blue and the really cool instrumental secret song.  You can listen to all these on my spotify playlist here.

Friday, July 17, 2015

Special Needs Spotlight || Della



Hi--We’re Caitlin and Chad. We’ve been married since 2001. In 2008 we left our homeland of Orange County, California to start a new life in Houston, Texas. Caitlin likes hot yoga, Downton Abbey, and sugar in all its forms. Chad likes running, watching “Cops”, and working on his amazing front lawn. Our son Archer is 11 and he likes listening to dubstep, playing Minecraft, and learning how to be Steve Jobs. Our daughter, Della Belle is 8 and is one of thirty-ish children with a rare genetic mutation of the ASXL3 gene. She likes her school bus, fans, and watching Russian cartoons. Somehow we missed the memo about going to college straight out of high school so we are now currently both students at the University of Houston. Chad is working on a business degree and Caitlin is a senior about to apply for graduate school to become a speech pathologist. We’ve been self-employed for over 10 years.

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Miggy: Hi Caitlin and Chad! Thank you so much for being here today and sharing your sweet family with us. Also, I LOVE hearing from both mom and dad in this interview--this is actually a first but lets hope it catches on! So lets start at the beginning, can you take me back to the day you knew your daughter would have special needs?  Was this during your pregnancy with a routine ultrasound, shortly after birth or sometime after that?  Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Caitlin: Della was developing slowly and I had this nagging suspicion that something was wrong but my pediatrician always brushed me off (always listen to your "mom gut"!!!) When she was 8 months old I got a second opinion. I remember exactly where I was and what I was doing when the doctor called and told me that Della had some serious medical issues and that they were life threatening. Everything stopped at that moment. My life felt over and I was absolutely powerless to change it. The next day was the 4th of July and as I sat surrounded by families laughing and having a good time, I felt angry. I wanted to shout “How dare you laugh and have a good time in front of me! Don’t you know that my baby is sick?!?!” It was weird knowing that just because my world had stopped, that didn’t mean that the rest of the world was going to stop and mourn with me; and that’s exactly what it was: mourning. I mourned the child I thought I had and the future I had imagined with her. I think it’s something that parents of a child with special needs has to go through many times throughout their lives: re-accepting that what you thought was going to be, is not what actually is.

Chad: This is something I remember well. When you have a child, you spend a lot of time planning out their future in your mind. Sure, it’s not this detailed schedule of milestones and accomplishments, but you definitely have this vision of what it will be like when they go off to school for the first time, or when they go to prom, or graduate from college… So when we found out about Della, it seemed like we’d lost a child; like the life that you assumed would exist was dead and replaced with this blackhole of nothingness. And as Caitlin said: the sadness of that lost life feels like mourning.


Caitlin: In the beginning I compared her with other kids her age, and that was painful. But as time has passed, I’ve learned to see Della for exactly who she is and I accept where she is at. I don’t see Della as an “eight year old girl”, I just see her as Della and that perspective is very liberating. Occasionally I am reminded of what “might have been” and I feel sad; but most of the time, Della is just Della and our life is just our life.

Chad: Once the other kids were just so far ahead, it stopped being this constant reminder of how your child isn’t progressing normally; but she just became her own category. And within her own category, she’s doing just fine.

Caitlin: The other difference between how I feel now and how I felt in the early days of Della’s diagnosis was my conviction that I would never be genuinely happy the way I was “before.” Grief is a very heavy emotion and at that time and I was sure the sadness was permanent. It is somewhat true that I’m not happy exactly the way I was before Della’s diagnosis, but I’ve traded that naive happiness that I see in newlyweds or first time parents, for something more substantial. I can appreciate the good moments because I have been through the sad. *Pretty sure that’s the exact plot of Pixar’s “Inside Out.” The beginning was hard but like the people at the park showed me, life doesn’t stop no matter how much you feel like it has. Slowly the happy moments began to outnumber the sad.

Chad: Life definitely has a much broader depth of emotions than it had before Della. I see other couples deal with their problems by going on vacation or by remodeling the kitchen. Many parents of disabled children will tell you, those aren’t options for us. So without the means to ignore our problems with a cruise, we’ve been forced to deal with our personal and marital issues--all the while, learning how to care for a child with disabilities. I feel like this experience has brought us to depths of sadness and heights of joy that we might have never experienced had Della not come into our lives; which ultimately, has brought us closer together as a couple.


Miggy: In your email you explained that your daughter's diagnosis was only recently named--Bainbridge-Ropers Syndrome--and that she was the 4th person in the world to receive this diagnosis. You started an online support group for other BRS families, which the current tally is 22 families worldwide. Uh--that's not a lot people!  So none of us are ever prepared for a disabled child, BUT in addition to the typical fears your family also had the extra stress/worry/burden of a disability that was so uncommon you had no road map so to speak and very little support.  First please educate us about Bainbridge-Ropers Syndrome-what are the traits and hallmarks of this syndrome? Second, please tell us about this special needs journey as it pertains to having a child with an extremely rare condition. I would assume you are as much an expert as any doctor in regards to your daughter and her condition.  Also, how has it been to be the touch point for other families who are walking this road--knowing that you didn't have anyone to reach out to for support when she was first born, has this support group been cathartic for you by providing the support you didn't initially have?  

Caitlin: We spent the first 6 years of Della’s life not knowing what she had. We had narrowed it down to an unknown genetic issue but that was it. After every test came back negative we felt both more relieved (“Thank goodness it’s not that one!”) and less relieved (“But if it’s not that then what is it?”). It’s very unsettling to not have a diagnosis: something is wrong, you just don’t know what it is. “Unknown diagnosis” became Della’s diagnosis, if you will.

Chad: In those early years, I think we made the mistake of dividing up the stress: Caitlin took over the stress of finding a diagnoses for Della - which was costing us loads of money, while I worried about how we were going to pay for it all on top of keeping our house. In many ways, while our main goal was the same (help Della), our day-to-day goals were very contradicting (spending on medical vs. keeping food on the table). This parceling of stress had very negative consequences on us both, because I think we both felt alone with our fears. Moreover, we both felt like the other person didn’t care.

Caitlin: With the recession and all of our savings gone from medical expenses, we knew we had to move out of California. After a lot of research we felt that if we ever found a diagnosis for Della, it would be at Texas Children’s Hospital (TCH)/Baylor College of Medicine (BCM) in Houston. When we met with the specialists at the TCH/BCM genetics clinic the doctor excitedly told us “We will have a diagnosis for Della when she is a young adult.” The next year he said that things were progressing and that maybe we would have answer by the time Della was 12. The year after that I was contacted by the genetics clinic asking if we would like Della to participate in their pilot program for sequencing her entire genome. Ummm...YES!!!!!

In August 2012 we got the call that they had found something. The good news was that they had discovered that Della had a mutation of the ASXL3 gene. The bad news was that they had no idea what that gene did. So we went from unknown diagnosis to ASXL3-but-also-unknown diagnosis. Coincidentally (or Divine Interventionally) the doctor who had isolated and was studying the gene, Dr. Bainbridge, worked in the very same office! We met Dr. B and we signed Della up for his study. At that time there were four children (including Della) who had been identified with ASXL3 mutations. Fast forward to 2014 when Dr. B contacted me to say that there were a few more children who had been diagnosed with ASXL3 mutations (recently named Bainbridge-Ropers Syndrome) and asked if I would be willing to become a contact person for families of newly diagnosed kids. I immediately knew that I was completely unqualified and I also knew I had to say yes. Until that time, we were totally alone in managing Della’s symptoms so the first time I talked to another parent of a BRS child was an incredible experience. Excessive laughing? Mine too! Fascination with water? Mine too! Stevie Wonder head shake? Mine too! We were no longer alone.

Chad: Yeah, this was a neat experience. It’s one thing for you to say, “My kid does x and y.” and for them to reply, “Mine too!” But it’s another thing when they say, “My kid does A and C.” And you realize that your kid does the exact same thing. It really was thrilling because finally there was someone else out there - someone else who knows exactly what your life is like.

Caitlin: There are several studies that are working to better define BRS/ASXL3. Today we have about 22 families in our Facebook group who have an ASXL3/BRS diagnosis. Like most diseases, there is a spectrum of symptoms but hallmarks include feeding tubes, no speech, low muscle tone, sleeping issues, poor eye contact, and impaired mobility (about half of the kids can walk). All of the children have intellectual disabilities. Some of the more unique aspects of BRS are excessive laughing, a peculiar head shaking “stim” (that looks similar to the way Stevie Wonder moves his head when he is playing the piano), and a strong fascination/preoccupation with water. We don’t yet have a firm prognosis about what the future holds for these kids and that’s a difficult reality for all of us.

Chad: The question “What will adulthood be like?” is one of those questions that’s on everyone’s mind, but is rarely discussed openly within the group. Whenever I hear about a new child being diagnosed, that’s one of the first questions I ask Caitlin: “How old are they?” As Caitlin mentioned, the oldest diagnosed child is in her late teens. It does bother us that we haven’t found any adults with BRS - we have theories as to why, but really the theories are just things we tell ourselves because it’s better than assuming that BRS kids don’t make it to adulthood.

Caitlin: Running the group has been very cathartic. By the time parents contact me, they already know their child has some disabilities so that initial shock is over. But receiving a diagnosis after what is usually years of searching, is still very emotional. Being available to families has given my experience and my struggle so much meaning. I try and always be the contact I wish I had had when Della was diagnosed.


Miggy: Della is 8 years old, how do her needs affect her and your families day-to-day life?  Has this changed over time?

Caitlin: Della is 8 and depending on the area, she functions between 18 months to 3 years old. Her expressive language is extremely low but her receptive language abilities are much higher. Della has a few signs that she made up herself but her impaired fine motor abilities means sign language is not an option. She has a touch screen speech device and she was able to do some basic communication with it, but one day she rejected it for some unknown reason. She wears ankle-foot orthotics and can walk very slowly so we always use her wheelchair when we plan on doing some longer periods of walking. Della is half potty trained and she does #2 on the potty but we’ve been working on the #1 part for five years. But, if I had to pick which half was potty trained, I would definitely choose #2! She started attending special education classes when she was three; and up until recently she had multiple weekly occupational, physical, and speech therapy outside of school. Also, Della is the cutest thing I’ve ever seen in my entire life.

Chad: I truly feel that she will be able to communicate with us some day. I think that she doesn’t like the communication program because she’s not capable of programming it herself (we’re barely able to do it). Della wants to talk about Monster High, and how she wants to eat the new cereal that she saw on a commercial. The variety of all she wants to say is so much more than a simple program is capable of doing - so she rejected it. I think that she’ll get there, but it will be when she realizes that reading and writing is the key. Because as Caitlin said, her fine motor abilities make sign language practically impossible.

Caitlin: As far as self care, we do a lot of the work. We spoon-feed Della, bathe her, dress her, and carry her up and down the stairs (why oh why did we get a house with stairs?!?!). Although Della’s progress has been painstakingly slow, she has never stopped learning and developing.

Chad: It’s the small accomplishments that keep us going. Just this morning Della was asking for a new fan (at least, that’s what I could gather), and I asked her, “A new fan? Who wants a new fan?” And Della raised her hand. It seems so small, but it’s communication. I asked a question, and she responded; which is huge compared to where we were just one year ago.

                                                                  
Miggy: What are the biggest worries you face for Della? Alternately, are there hopes and dreams you have for Della that you didn't used to have? I don't usually ask that second part of the question, but since Della is a little older, I'm curious if you've seen changes in either herself or even the world/technology that have since given you more hope?

Caitlin: Worrying is pretty much my hobby--a craft I have skillfully honed for 33 years. I have staple worries that are pretty universal: Who will take care of her if we die first?; Ehat will happen if she dies first?; What if I miss symptoms of a serious health threat? I worry about money ALL THE TIME! I worry about someone hurting her and she can’t tell me; I worry that I will never get to see the world or even get a few nights away; I worry that sometimes I don’t want any nights away. Then I have my more random worries like her falling off a cruise ship (even though we have no plans to go on one) or if we take her to Disneyworld when she’s 40 and we aren’t strong enough to keep her from bolting off Pirates of the Caribbean.

Chad: It’s weird, because you grow up in a family with siblings so generally you sort of know what to expect and what to be worried about. So when Della was born, we worried about stuff like: Is she going to kind to others, rebellious, a good student, a teen mother...all of the usual fears that parents of daughters have. After the diagnoses, there were a few conversations where we were able to let some of those fears go. But then we started educating ourselves about raising a disabled child--especially a daughter--and a lot of those fears came back but a lot stronger. You hear stories from other parents--horrible stories--about the abuses: physical, sexual, etc., that are committed on mentally disabled children, and your heart sinks.

Caitlin: My dreams for Della have definitely grown as she has progressed but I tend to be more cautious in my hopes. Chad is usually more optimistic than I am and that’s just another reason I love him so much. I try to find the balance between acceptance of where Della is at now and hope for where she could potentially progress to. That’s one upside of having a disease no one knows anything about; you can never say for sure what she will be able to do. No matter what the experts say, there is always hope.

Chad: I do tend to be more optimistic. But as Caitlin said, it’s cautious optimism--optimism based on empirical evidence. After mourning the life that we lost to the disorder, there was a period of time where I don’t think we thought too much about the future--as we were so caught up in the stress of the moment. We’ve since moved past that, and have allowed ourselves to project our hopes out further than just a few months. I think for me, my hope for Della is the same as it is for my son or my wife: that they’ll have a life full of happiness and joy. How they choose to do that, is up to them; and I’ll be there to help.

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?

Caitlin: Humor is the only reason we have made it this far! Besides his dashing good looks, my husband’s sense of humor is what attracted me most to him. Life with kids is pretty funny but with Della it is especially so. I started posting pictures of Della’s antics on Instagram and hashtagging them #DellaProbs. Not sure if people find them hilarious or disturbing. I personally think she is the most adorable thing I’ve ever seen but I am also her mom so...

Here are some funny quotes (Feel free to edit anything that is too crass for your blog. My family tends to err on the side of inapropro.):

Me: Let me call you back, I’m almost done laminating the new American Girl catalog.

Chad: I deleted it from the youtube history but she somehow keeps finding that prostitute cartoon.

Me: I’m sorry Della ate her library book Mrs. Wisemann. She just really loved it.

Archer: I’m pretty sure Della thinks the light pole is her boyfriend.

Chad: Della’s new hobby is putting plastic bags over her head. You really have to keep a close eye on her.

Archer: Mom! Della somehow got a knife and she’s stabbing the watermelon on the sink!

Me: Just fair warning, my daughter loves to lay on people’s boobs.

Archer: No no Della! Stop staring at the sun!

Chad: If you lick the shower floor again, you’re going on time out!

Chad: Oh, sorry my daughter lifted up your shirt, she’s been doing that to everyone after she saw a belly button piercing.

Chad: I can never tell if Della has to poop. Ask Caitlin, she’s like the poop whisperer.

Chad: In many ways, Della is trapped in her body. Moving around takes a lot of work, so she primarily just sits on the couch with her iPad; which can be boring and monotonous. We’re not capable of entertaining her at all times, but we are capable of making what time I do spend with her enjoyable. I think we’re really good at diversity of typically mundane activities, along with unexpected humor--and singing--and I guess, dancing too. Caitlin is a lot of fun to be married too, and is very good at making life fun and unexpected. Sometimes we’ll just break into improvised songs about normal day activities--as though we were in a musical--and Della won’t even be phased by it. Like, in her mind she’s thinking, “Nothing unusual here.” Usually though, she’ll get up off the couch and want to dance too--like how for some reason, the other night we all started dancing when the Cops theme song came on. Of course, we were all just trying to make each other laugh, and Della ate it up.


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

Caitlin: I would say a good rule would be to avoid criticism. We are doing the best we can, even if our kid has eaten only popcorn for the past five meals. Also, I try and remind people that there was a time before I had Della and I felt awkward and unsure about how to respond to someone with a disability. Now I prefer people ask questions instead of awkwardly avoiding. I think sometimes people are afraid of hurting my feelings by bringing it up but here’s the thing: I already know Della has disabilities.This isn’t news to me. If you ask, I won’t suddenly be reminded that my daughter has a genetic disorder and then burst into tears. So ask away!

Chad: There are definitely people who stand out to me because they ask about my daughter; which is nice because most people avoid the conversation. I also understand that I’m capable of talking about my daughter like cat owners talk about their cats. So I try to keep it simple: a few sentences. If they want to know more, then they’ll ask.


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?  As you mentioned in your email it can be hard being the sibling of a special needs child--what do you do to try and counter some of the imbalances that naturally occur?

Chad: Our time is limited and our daughter requires an unfair amount. And it’s not just our time, but it’s also our patience. And so when we do have interactions with Archer, it does tend to be limited in time and lacking in any degree of patiences--which is completely unfair. Therefore, he does have every right in the world to resent his sister and hate her, but he doesn’t. In fact, I’m often in awe at the kindness our son has for his sister. I’ve never once seen him hit her, or lash out at her. I’ve never seen him angry at her--frustrated, yes, lots of times--but never angry like kids can get. And it hasn’t always been easy: she’s gone through some pretty horrible stages--like when she was latching onto people’s hair and laughing hysterically as they tried to pry her fingers open, usually screaming. I have a lot of reasons to be proud of my son, but I’m most proud of the kindness that he shows his sister.

Caitlin: Archer has the weirdest life. He’s half only child and half neglected. Della doesn’t talk so Archer gets that part of us all the time. And I can assure you that he takes full advantage of that. He never stops talking. Ever. On the flip side, I have to constantly brush him off because I’m suddenly in Della crisis mode. We were his Cub Scout leaders for the past three years and that was something special we did with just him. Archer is so patient with his sister. Still, I am prepared for the day when he might say that Della embarrassed him or that he feels resentful that she gets so much of our attention. Validation is so important for kids and we invalidate their feelings all the time (“You can’t be hungry, you just ate!”, “Quit crying, people have it so much worse than you!”, “Shame on you for saying you’re embarrassed of your sister! She can’t help it!”) I want my son to know that the feelings he has are normal and not “bad”, it’s how we handle those feelings that we can sometimes go wrong. The Power of Validation: Arming Your Child Against Bullying, Peer Pressure, Addiction, Self-Harm, and Out-of-Control Emotions by Karen Hall. Game changer ya’ll, Game. Changer.




Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Della's mom and dad?
Caitlin: I have learned that I am so much stronger than I ever thought. If I could heal Della, I would do it in a heartbeat for her sake. But if it were for my sake, I wouldn’t change anything. I didn’t think I was capable of running a parent support group, or being involved in pioneering research for a genetic disease, or able to deadlift 60 lbs. At 30, I returned to school to become a speech therapist. I never thought I was smart enough to go to college. Yet here I am, at the top of my class preparing to apply to graduate school.

The most painful lessons I’ve learned have been in my relationship with Chad. Being married with a special needs child is extremely difficult. If not for Della, we would have probably carried on in a mediocre relationship because neither of us would have worked to overcome our issues. Della was like throwing a spotlight on our unhealthy behaviors and every weakness became magnified. We needed to be more unified and able to ask for help and to share the financial and daily care burdens of our daughter. Instead Chad suffered for years carrying the financial stress of crushing medical bills and at one point he worked the night shift loading UPS trucks on top of his regular job. He never felt like he could come to me and say “I’m scared we could lose the house.” I had the burden of caring for Della which included hundreds of appointments, decisions about her medical/educational needs, and endless cleaning up of bodily fluids. He didn’t bring it up for fear adding to my stress and I thought he didn’t care because he didn’t talk about it. Together we had a daughter with special needs but we faced it alone. Loneliness and avoiding painful emotions breeds toxic coping behaviors and I didn’t think our marriage would survive. As embarrassed as I feel about admitting this in public, it took a lot of intense therapy, painful realizations, and the hardest work I’ve ever done to save our relationship. My marriage today isn’t perfect but it is so much better than I thought it ever could be. I hope that our story can help other parents experiencing the same thing. Things can get better, even in the worst situations.

Chad: Honestly, I think that the biggest lesson I’ve learned, is that I have lots of faults: I was jealous of those around me who didn’t have disabled kids; I was prideful and ashamed when I had to give up money and possessions to pay medical bills; I was quick to highlight my own contributions to the family and slow to acknowledge all that Caitlin was doing...Had Della not come into our lives, I could have probably hid a lot of these poor attributes for years--perhaps my entire life. Caitlin always says that having Della was like placing a magnifying glass over our shortcomings. If it wasn’t for Caitlin’s patience, love, and support, I would have self-destructed many times over.

Caitlin: Awwww! That’s so sweet! The same is true for Chad and I appreciate all his love and support. I’m so glad neither of us was at our worst at the same time. It’s something really special when someone knows all your faults and who has seen you at your lowest, and they love you anyway.

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Caitlin and Chad that was amazing.  First, I really loved the openness both of you shared in regards to your relationship and how having a daughter with special needs has tried that relationship, but ultimately strengthened it. I especially found it enlightening when you talked about both of you shouldering different burdens but not really communicating about it, therefore leaving you feeling totally alone. There are probably a lot of special needs parents out there nodding their heads, totally understanding what that feels like. I was also moved with the absolute honesty you shared in regards to your son Archer and how he basically gets the short end of the stick a lot. It's a hard truth a lot of families have to live with. He also sounds like a terrific kid. Lastly, your funny quotes had me laughing out loud! So great. And so great you both find each other so fun and funny. You guys are awesome. I'm so glad you both participated today. Best of luck and big hugs to your whole family. You're kicking some serious special needs family ass! (If you get to say boobs, I get to say ass.)

Once again I'm just in awe of these families I'm lucky enough to feature.  Please, please email me if you or someone you know would like to participate in the special needs spotlight.  Email me--or have your friend/family member email me--at thislittlemiggy at gmail dot com.

Have a badical weekend!