Wednesday, April 16, 2014

New Home, New Life...




I have a little less than 30 minutes to get some writing and thoughts out... so here we go.  

Yesterday we got the text that we've been waiting for:

Congratulations!  The homeowners agreed to the terms and the home is yours!  

Or something like that. 

The Mr. and I busted out the bubble (Martinelli's natch) and celebrated.  

I AM excited and I DO like this house.... but this move is still coming with a hefty amount of trepidation.  The poor husband has had to endure my fickle feelings and existential questioning more than one person should be subjected to.  ...But is this what we really want?  Did I choose this life?  I feel like Cincinnati isn't what I would have chosen, but here we are.  When I look at the life I may have wanted, I'm not sure this is it... then again, I have multiple competing wants and I can't have them all.  I guess in order to fulfill some wants, I have to let go of others.... and maybe this want is the  best want of all...I'm not blaming you, I promise... just tell me it's going to be OK.  

He looks at me side-eyed, grabs my hand and says, It's going to be OK.  

But like I said, I AM excited.

On top of it all I have so many things grabbing and pulling at my attention I am constantly starting tasks only to get diverted seconds later by another, more pressing task.   I have to mentally run down a check list just to make sure I actually get the essentials done like, "change out of pj's before leaving the house" and "feed the baby."   

My friend and I are still working on a prom dress for a girl in our church and friends, we are hand beading the bodice and it looks pretty rad, but also the part about hand beading the bodice, which in case you missed that means we are sewing beads and trim on by hand, is taking hours upon hours.  And we thought we had 2 more weeks, but instead realized prom is this Saturday.  And yesterday when she wanted to work on the dress during the day I was all, Oh I forgot that I'm having a dental procedure done and actually have to be sedated and B is taking the day off because I will be so loopy and out of it and I'm not allowed to leave my house.  Which perfectly sums up my life lately.  "I'm so busy that the really important thing I need and agreed to do is going to have to take a back seat to the other really important thing I really need to do."  

And did I mention we flew out to Cincinnati last weekend for a whirlwind trip to see our new house?  See I should have said that first when I was talking about the house, but my head these days is just a pin-ball machine bumping and jumping from one thought and task to the next because somehow it all has to get done.  

Even the blogging must get done.  

So here I am.  

Oh and my baby?  She's grabbing her feet already.  I die.  So cute (see photo above) and the best little airplane traveler you ever did see.  

And when I once again was starting to feel nervous and unsure about our future in the beautiful, yet not-quite-exotic city of Cincinnati I just looked to my wonderful husband for that little bit of reassurance and pleaded, Just tell me it's going to be amazing and great, right?

Again he looks at me side-eyed but this time with a coy smile and says, I didn't say it was going to be great.  I said it's going to be OK. 

I'll take it.  

*****
Anyone else relate to this excited/not excited feeling?  Anxious for change, but not sure this is the change you were seeking?  But at the same time maybe it is the change you were seeking?  How did it turn out?  Just OK or were you able to make it great?  

Friday, April 11, 2014

Special Needs Spotlight || Logan




Miggy, Thank you for giving us the opportunity to share our story! We love talking about Logan and our journey with him. My husband Brian and I got married in June 2010 and we knew we wanted kids shortly after we got married.  We were so excited to find out I was pregnant but had no idea what challenges lied ahead.  When Logan was born he couldn't breathe on his own and he was very floppy.  After a week in the NICU close to home and no idea what was wrong with Logan, he was transferred to another children's hospital.  Every kind of test imaginable was done on Logan, and finally after what seemed like the longest 7 weeks ever, Logan was diagnosed with x-linked Myotubular Myopathy, a very rare and devastating muscle disorder.

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

Miggy:  Hi Kathleen!  So glad to be sharing your sweet Logan with my readers today.  Thank you for participating.  Tell us about when you first found out about Logan's condition--was it shortly after birth, before birth or sometime later?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Kathleen:  The only implication that something was wrong during the pregnancy was a increase in amniotic fluid the last trimester.  My OB kept a close watch on me, but we wouldn't know anything until Logan was born.  Once Logan was born it was evident that something was wrong.  He was very floppy and unable to breathe on his own.  All I remember feeling was scared, worried and overwhelmed.  Logan being my first child, I never imagined this happening.  I would say now, that we have faced with Logan's medical issues for over 2 years, those feelings don't even arise unless Logan is really sick.  He is our little blessing and we enjoy taking him out and letting him be a kid like every other kid.


  
Miggy:  Would you please educate us on X-linked Myotubular Myopathy and explain how Logan's needs affect your day-to-day life?  
     
Kathleen:  X-linked Myotubular Myopathy is a rare form of muscular dystrophy.  It affects all the muscles in Logan's body including the muscles that help us swallow and breathe.  MTM affects males but females can carry the gene and have mild symptoms.  There are 300 known cases to MTM in the world.  No ones knows the prognosis of MTM because it is so rare, but we have been told most don't make it past the age of 10.  Logan has a tracheostomy that provides a clear airway in a emergency situation, and he also has a home ventilator that he uses at night and when he's sick.  Logan has a feeding tube that all of his feedings are given with. Logan needs 24 hour care and we have nursing for 18 of those hours.  Logan needs physical, occupational, and speech therapy every week. Luckily we do have a special needs school in our area that Logan attends.

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

Kathleen:  My biggest worry is every parents worst nightmare.  Losing their child.  I know that one day this awful disease could take Logan’s life.  I'm not prepared for that.


Miggy:  How can people best approach or respond to your Logan and your family as a whole? Is there something you wish other people knew so as to avoid awkward or hurtful situations?    

Kathleen:   Talk to us.  Ask us questions. We are not afraid to talk about Logan's disability. But we ask, please don't feel sorry for us. We want Logan to be treated like a normal person.




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?  

Kathleen:  Funny you ask that. Logan has such a brilliant, goofy personality. He has a passy muir valve that we can put on his trach that allows him to make sounds.  Logan can put his finger in the valve and make a honking noise that sounds just like a goose.  He face lights up and you can't help but laugh.  He's quite the comedian!


Miggy:  I know I never imagined having a child with special needs until we suddenly found ourselves in that situation and I imagine most parents feel the same way.  Are there some ideas you had about having a child with special needs that have since changed?  Any advice you would give to another parent starting a similar journey?  

Kathleen:  Patience is something I never use to have, but I learned real quick to have patience with a special needs child. Be your child’s advocate.  Don't stand down to anyone if you need something for you child, whether it be some kind of therapy, equipment, or support.




Miggy:  What is the biggest lesson you’ve learned since becoming Logan's mom?   
Kathleen:  Cherish every moment. We were given Logan for a reason. He changed Brian and I in a way I can't explain, but things that use to matter, don't matter anymore.  Being a mother is the greatest gift you can be given, but being a special needs mom is the best gift of all.


 ***************

Kathleen, thank you so much for your beautiful words and sharing your sweet Logan with us.  I love the last picture of your family--you can just see the joy on all your faces.  And I think that's one thing I loved most about your spotlight--despite Logan having this extremely rare condition you love your life, you love your son and it shows.  And yes to "please don't pity us."  I think sometimes people confuse compassion with pity--they are not the same thing and pity is truly not helpful and can even be offensive.  (I feel a blog post coming on...)  Thanks again Kathleen and keep being the amazing warrior mama for Logan that you are.

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, April 09, 2014

DIY: Mini Fabric Bows


I have mixed feelings when it comes to accessorizing baby girls.  About the time I had my first baby the ginormous flower/bow baby headbands came into fashion and it just wasn't me.  In fact I find a lot of baby girl hair accessories just aren't my style.  Additionally, sometimes I feel like we're supposed to put a bow on our baby girls as a way of letting the rest of the world know, Yes, this is a girl baby.  And something about that just annoys me.

Buuuut, it is fun to be girly and there's a limited amount of time when you can put anything you want in their hair and they can't yet pull it out/protest/run away.  And there's something about a small, fabric bow in a cute print that hits just the right note for me.  Somehow it seems classic and modern at the same time.  These little bows take a little practice to get them just right, but once you figure it out they come together pretty quickly.


Materials:
Fabric 
sewing machine + iron
long needle
hot glue
ribbon and/or elastic



1.  Grab some fabric scraps.  Since they're pretty small you can use your fabric scraps for this project.  I was so happy because I've held onto a few scraps of fabric I just love, but the scraps were too small to use elsewhere.
2.  Cut them into rectangles.  I didn't measure exactly, just cut based off size of scrap I had.  That being said, the smaller it is the harder it will be to work with.
3.  You can see that the bottom red one ended up being 4inches long and a little less than 2 inches wide.  Feel free to  play around with the proportions here.  Also make sure you have extra fabric for the middle band.  As you can see those scraps are even smaller.
4.  Fold in half the long way and sew a seam along the side with a small seam allowance.  Remember these bows are tiny!  Since the seam will be covered up anyway you can just sew the seam on the right side of the fabric.



5.  With the seam in the middle of the fabric, iron it flat.
6.  Now loop it together with one end tucked inside the other end.   It may help to fold the corners a little to get the end securely inside.  You want to have plenty of overlap for step 9.  Also the seam should be on the inside of the loop.
7.  Now fold the bow making sure that the raw edge of the fabric is in the middle.
8.  Iron flat.



Now you'll want a good sized needle for this next part.  This pin is quite a bit bigger and longer than most of my push pins.


9.  Now to make the proper folds in the bow you're going to weave this pin in and out of the little fabric bow you have.  Start with the pin going in on the top or upper part of the fabric.  It may help to draw a line in pencil marking the center.  



10.  Try to get 3 distinct pleats like this, and then push it all together to get a nice little scrunch.  If they end of your fabric isn't pushed far enough into the opposite end, this is where it will fall apart.  I tried sewing the ends together, but it made it too bulky for this step (at least for the size of bows I was making).



11.  Now get some thread or even embroidery floss and tie it tightly around the middle a couple times so you can remove the pin and still have those lovely pleats.  Make sure to cut off the end of the thread.  



12.  Now cut your smaller piece of fabric into a long rectangle.  
13.  Iron the sides into the middle hiding the raw edges of fabric.
14.  This step is important!  Make sure to line up your smaller loop in the middle of the bow.  Hopefully your thread is in the middle, but it may not be exact...so line it up.  You will let out a few swear words if you almost perfect bow is a little lopsided.  
15.  Starting at the back place a tiny bead of hot glue (be careful little fingers!) and place the end of your small loop on the back.  Continue to place small beads of glue around the center as you pull your middle piece of fabric tightly around the bow.  You could probably use fabric glue, but it really helps to have something fast drying here.  


You now have cute little bows!  Yippie.  



Gathering some very soft and thin elastic (I like this kind for little baby heads)  plus some cute and dainty ribbon you can sew them together to make cute little headbands.  



Make sure to measure baby's head and add 1-1.5 inches for overlap.   Also, use at least 5 inches of elastic around the bottom so you have plenty of soft stretch.  I even just made one headband entirely from the elastic and of course it's the softest and stretchiest of all.  Then just hot glue your bow on.  Make sure to glue your bow slightly off center on the ribbon.


Bows and headbands for the win!  
You could also attach bows to barrettes if you're not into headbands.  





I kinda have to admit...I think I'm converted to bows on my baby.  

Whats your take on babies and bows?  Do you like them loud and proud, or are you more like me and shy away from bedazzling these little ones?  

Are you converted?  Maybe?  

 

Sunday, April 06, 2014

Home Tour: San Antonio



As I mentioned last week we put an offer on a house in Cincy and (drumroll please) it was accepted!   This is very exciting for us, as finding a home that works for our family has been a little tricky (i.e. power chairs can't do stairs).  We're going to make a quick trip out there soon to see the house in person.  As we're getting ready to start a new chapter I'm feeling very nostalgic about wrapping up our time here in San Antonio.  A big part of this nostalgia is directed at our home.  I love this house.  And I have honestly felt so grateful to live here these last 3 years.  In honor of our beloved abode I thought it was high time I finally did a home tour.  A few months before we move...why not?  Some of these pictures were actually taken today, while others I've stolen from previous posts FYI.

Some of you long time readers may remember that when we started looking for homes in SA that I did the dumbest thing you could ever do--I started looking WAY too early and fell head over heels in love with a beautiful midcentury modern home that we could never get.  For starters we probably weren't going to buy a home and secondly, by the time it came to actually go house hunting it was no longer on the market.  It seemed pretty hopeless, but I could not get this house out of my head.  When I came to San Antonio to look at home I came to this house--my San Antonio dream house--and knocked on the front door.  When the owner answered I explained that I knew his home was no longer for sale, but that my family and I would be moving to San Antonio in 3 weeks and would they be willing to rent it out to us?  Incredibly they said yes!  Can you believe that?  Sometimes I'm still amazed how it all worked out.  It has been the perfect house for us.  We love this home and will be sad to move.  Forgive me as many of these pics you may have already seen from other posts, but I wanted to have them all in one spot as a homage to our home here in San Antonio.

As excited as I am to own a home again it's going to be hard to top this home in terms of charm and the overall cool factor.  Seriously, this house is just cool.  Almost everyone who comes here for this first time comments on what a great house this is.  And I'm always like, Ya.... it is.  When you first walk in there is a little entry way with this brick planter and sort of floating closet and a great sputnik type light fixture hanging right above.   The formal living room to the left is bright and open.



The current owners actually bought this house from the original owner--she was a little old lady who had built this home in the 1950's and raised her family here.  Our landlords love midcentury modern design (as do we!) and made a lot of updates to the house while also keeping the original integrity of the home.  They pulled up the shag carpet in favor of wood floors and added the period appropriate light fixtures in the entry and dining room.  Being big MCM fans ourselves we have quite a few vintage MCM pieces ourself including this white couch from an antique mall in Cincinnati, Bertoia Childs chairs, china hutch with vintage server ware, and our dining room set we bought in NYC right before moving.  

A few of my favorite features:  The angular ceilings, the giant sliding glass door that lets in a lot of natural light and the curved brick wall that separates the front room from the rest of the living space.  




This wall is probably my favorite feature in the entire house.  There is a little pass-through window to the kitchen.  Apparently this was used for passing-through cocktail drinks from the kitchen into the main living room where the par-tay was presumably happening back in the day.  However our girls have used this primarily as their drive-thru window when playing McDonald's.  


What's even more amazing is that our landlord told us that these bricks were mined from a lake bed in Utah in the 1950's.  These are real fossils people.  I love that!  Especially since both B and I have Utah roots.  Isn't that amazing?  Our landlord said they only allowed this lake bed to be mined for 3 years (from 1954-1957 I believe) and there are quite a few houses up and down these streets with this same brick--but many people renovated their homes and tore it down over the years.  So glad this original beauty is still here.  It's also the same brick used in the front planter.  


 

Large family room, aptly renamed the friendship room by our eldest.


These shelves divide the friendship room from the computer and my studio.  This was not my ideal set up for a studio space, but for 3 years it has worked well.  You may remember when B made these shelf inserts for this long divider wall.  And of course that beautiful modern kids table.


 

And of course our bedroom that we worked so hard to make our own. B's amazing bed, my quilt and even the desk renovation.



I added this painting after the room reveal.   
                                                         Photo credit Mark and Antia Warnick. 


PSPs bedroom featuring the floating bed--one of B's first big projects in this house--and the dipped chairs.  



The backyard has been a pretty great little space as well.  The girls love playing out there... be still my heart, they look so young here.




I'm so grateful for the time we've had here and the chance to live in a home that I loved, as well as a home that worked well for us--a power chair friendly house even!  Yes I love this house--everything from the layout to the location to the size.

But what I love even more are the people in it.
Thankfully I get to take them with me to Cincinnati.  

xoxo
Miggy

Tuesday, April 01, 2014

3 Months

This was a post church photo session from a few weeks ago when this little doll slept through the entire 3 hours of church and no one got to see her in her cute dress.  


We put an offer in on a house in Cincy.

And I'm kinda sick.

And we took our car into get fixed and instead it got returned to us with our power chair lift broken and a dent in the back all while the original problem we took the car in for was miraculously unfixed.  Now they're fixing it.

And I'm helping to make a prom dress for a girl in our church.

And I've got  a baby who is 3. MONTHS. OLD.

But life is good.  Life is "I am in love with this amazing, most delightful 3 month old human I have ever met" good.

She is a dream.
We talk and coo and cuddle all day and I love it.
I am officially in baby heaven.
Don't even try to tell me she is anything other than the most perfect baby that ever existed because I won't believe it.

Just popping in to say hi.


Friday, March 28, 2014

Special Needs Spotlight || Steven

Steven today

Thank you so much for having me, Miggy.  My name is Jessica; I am a wife, mother to 2 boys, and a daughter of the King.  My brother, Steven, has cerebral palsy, epilepsy, and severe brain damage as a result of trauma during a careless delivery.  Steven has a child like mentality and needs help with all the basics: eating, bathing, dressing.  A basic way to describe his mental understanding is he can write, but he can’t spell or read.  He can just barely write his name, but most can’t read it.  He can follow simple directions.  Emotionally, he is generally mild mannered but has a violent temper, and has no real understanding of emotions or how to control them.  Physically, Steven has tonic-clonic (formerly called grad mal) and absence seizures, even with medication.  His limbs turn in, he drags his right leg, and he is bent forward.  He can speak and has good grasp on language.  While he has had his disabilities since birth, Steven has declined rapidly in the past few years compared to the first 40.  He currently resides in an assisted living facility but my mother, who is 70, is still his primary care giver.  She has recently started including/training me in the many, many areas of his care from managing his medications to reporting to the judge on how he spends his SSI money.

 ***************

Miggy:  Jessica, thank you so much for participating in my spotlight series.  Today we're talking about your brother who has cerebral palsy, epilepsy, and severe brain damage.  I'm always glad to have a different perspective in our spotlight series, especially that of a sibling.  You mentioned that your brother has cerebral palsy caused at birth by a careless delivery.  Can you briefly share that story with us?  What happened and how quickly did your parents realize your brother was going to have life long complications?  

Jessica:  My brother was born in 1968, and according to my mother -whom I consider the authority on the matter- the doctor was drunk.  Steven was born with the aid of forceps, common then and not unheard of now, but his head was squished.  He had large, red and purple bruises on his head.  Yet he was breathing unassisted, eating and had a normal heart rate; the doctor told my mother not to worry.  He was diagnosed with cerebral palsy at about 6 months old.  The pediatrician then told my parents Steven would never walk, talk, etc., and recommended he be “institutionalized”.   That doctor did not know my mother!    That was not happening.  But it was literally years before they knew the full extent of his injuries and what the complications would be.  There was no indication of any problems during the pregnancy, my parents received no explanation and were offered little support from the medical community.

  Steven and Me, 1980

Miggy:  How did your brothers needs affect your family's day-to-day life both when you were growing up and now?  How did your parents balance his needs with yours and any other siblings you might have had?  Any advice for us parents who are also trying to figure out that tricky balance?     

Jessica:  Since Steven’s mental abilities are child like, the older he got the more his disabilities affected him, and us. Steven was appropriately functional and personable as a child for the most part.  Honestly, we didn’t have to accommodate him much.  He had some seizures and his gait was compromised, so falls and head injuries were an issue. 
He loved participating in the Special Olympics, and was in the special education program through the public school system.  I was never embarrassed or uncomfortable with him.   My parents divorced soon after I was born, so for the first 10 years it was just the 3 of us*.  My mom, my hero, had some support from my dad (mostly financial) but she really did it alone.  This seemed normal to me but holy cow!!  Looking back I cannot imagine how hard it must have been.  She had a full time job outside the home and the full time job of managing Steven’s care.  So balance didn’t really exist.  The good news is I did well in school and was well behaved.  I played by myself all the time.  I did not have any extracurricular activities or play dates, and I was very lonely. My gained perspective from my childhood is that all family members need to be a part of the equation.  My advice for any family is to spend one-on-one time with each child, and to do things together as a family, making sure everyone can be heard and express themselves.  Every family’s “normal” is different, so acknowledge the differences and work through the issues and feelings that come with them.  I think my mom tried to shield me, and I also think she just didn’t have the time.  I wish now I had been more involved in Steven’s life growing up, and maybe I would have felt less isolated/closer to both of them.

Fast forward to now: Steven has activities every day.  He loves an arts program called Latitudes, where he attends twice a week.  He spends many days with other disabled adults, many of whom he has known his whole life, in a day program.  But he is very withdrawn and reacts violently when annoyed or frustrated.  My mother still takes Steven to every doctor appointment (there are a lot), micromanages the staff at his house/programs, and brings him to her house on the weekends.  Nothing goes on in his life without her knowledge and approval.  Steven must be directed to do basically anything.  He has no logic skills -just like in the movie Rain Man- ask him how much a candy bar costs he’ll answer $100, ask him how much a car costs he’ll answer $100.  Steven will talk to pretty much anyone, but he is hard to understand both because he mumbles and because he often doesn’t make sense.  He has a terrible memory (example: if he spends the day with a friend wearing a purple shirt, Steven will call him “the purple guy”), so he is not exactly reliable for relaying information even about himself.  He takes lots of medicine, and it is time sensitive, so it must be measured and available all the time.  The seizures are no longer well controlled by medication and just about any change in his routine will cause one.  Steven’s epilepsy is so sensitive that when the pharmaceutical company updated the coating on his Dilantin, he had constant seizures and nearly died.  It took weeks to figure out the problem.  Now all Steven’s medicine is special ordered so it will never change.  He has osteoporosis on top of cerebral palsy, so as he ages his bones get more brittle, his legs and arms continue to turn in and his motor skills continue to deteriorate.  He will soon need a wheelchair and eventually a feeding tube. 
Steven at Latitudes


Miggy:  What are the biggest worries you and your parents face for your brother?   

Jessica:  Oh mercy.  Where to start?  Steven is so physically and emotionally dependent on my mom.  Once she cannot care for him, I cannot imagine how he will cope.  I am afraid he will choke or aspirate his food.    If he got lost or left the house alone, he could only tell someone his first name and that is assuming he even realized he needed help.  He might hit his head having a seizure.  He might fall and break any or every bone.  Also, Steven is easy to ignore because he is quiet and I worry he will be neglected.


Miggy:  Your mother has been his caretaker all his life, but that in a few years that responsibility will switch to you.  First, tell us about your mom--how has she handled this responsibility and what have you learned from her?  

Jessica:  My mother loves; this is the #1 way to describe her.  She has dedicated her life to Steven.  Almost tied for #1 is that my mom is as tough as nails.  She has stood up for Steven to doctors, principals, judges, you name it.   She does not take any crap.  It was a combination of these traits that led her to find an assisted living facility for Steven (he moved about 10 years ago).  She needed help caring for him and she was concerned about him moving in with my family someday.  She then spent YEARS researching places, and now he lives with one other disabled individual and a caregiver, in a private home managed by a private company with nurses and social workers.  It is a far cry from an institution and Mom is over there or on the phone with Steven every day.  I suspect the staff is terrified of her.
My mom is working on releasing some control.  She is teaching me how to handle the legal issues surrounding being an adult’s guardian, how to work with his many doctors, case workers and social workers, how to get him to eat, all kids of things.  But the real lesson is how to be Steven’s champion, his defender, and his cheerleader.


Miggy:  So how do you feel about becoming your brother’s primary caretaker?  Is this something you willingly decided to take on or did you feel more of a family obligation?  In your experience how can parents help make this type of transition the best possible for everyone involved?  

Jessica:  Thanks for asking this.  No one ever has.  Again, I say to parents: involve the family as much as possible.   Communicate!     

There was never any question that I will be taking over; no one ever asked me and I always knew it was coming.  I want to say “he’s my brother!” and “I am happy to do it!” And it is true; I do love Steven and want the very best for him.  But I am also terrified and very overwhelmed.  And while I’m being honest, angry.  I believe it is natural to have both kinds of feelings about it.  I remind myself that no one chose this situation, and I pray for peace and patience.  I am thankful for my amazing husband; he married me knowing this would come down the pike and is 100% on board.  I am glad we are transitioning gradually and that, God willing, I will be able to ask my mother when I need help.  At this point I have no idea who will outlive the other, Mom or Steven.

My stepdad, Mom and Steven 


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?  

Jessica:  Recently my husband, sons, and I spent a few days with Steven while my mom and stepdad were out of town. He had been very combative about going to his house, and since she was only going to gone a few days, my mom asked us to stay with him.  When she was explaining things to me, she said she had been putting his medicine in his mouth, serving him meals on the couch, and pulling the bed sheets back and tucking him in at night.  I said, “Mom, he has really gone downhill if you have to do all this for him!” She sadly agreed.  Well, while she gone, my husband and I put Steven to the test.  I put his pills in his gnarled hand, and he took them.  My husband helped him to bed, but he climbed in on his own.  And he ate with us at the table.  But as soon as my mom returned, Steven moaned and groaned for a snack on the couch.  He was playing her like a fiddle!  I told her, “No wonder he wants to stay here, he is spoiled and has you snowed!”


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

Jessica:  Steven truly loves attention (as seen in the story above!).  He may not show it, but 95% of the time he wants people to talk to him.  People should just ask Steven how he is doing, and listen even if they can’t understand the answer.  He is very awkward and clumsy, so grace is always appreciated.  I wish people knew how sensitive Steven is, he does not like to be stared at and he does get his feelings hurt even though he can’t explain it. 
  
Miggy:  What is the biggest lesson you’ve learned from having a brother with cerebral palsy and brain damage?   

Jessica:  There is so much good in this broken world; you just have to look for it.  When Steven was young, and his body worked better, he laughed at everything; he still thinks pretty much everything is funny and gives a smirk.  Because he truly doesn’t understand his limitations, he doesn’t feel sorry for himself.  And I am sure my mom feels cheated, and who knows what she does with the anger she must feel.  Yet she has dedicated her life to caring for and loving Steven, not pursuing lawsuits or punishment for those at fault.  While Steven’s circumstances are not what we would want, the lessons are universal.  Choose joy.  Choose love.

*My mom remarried when I was 11, and we gained 3 stepsiblings.  They have been married 26 years, and we are all still close.


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Jessica I loved reading your thoughts, feelings and perspective about your brother Steven.  It's clear you love him deeply, yet like all siblings it hasn't always been an easy road.  I'm so glad you reached out because I love getting a siblings perspective on life with a special needs family member.  First, your mom sounds like a rock star.  I hope I can be as patient, strong and steadfast as your mother.  Second, I admire your dedication to your brother as well.  Perhaps there's never been any question as to who would take over his care when your Mom is gone, but I don't think that is something every sibling would take on.  Thanks for your insights--so valuable for all us special needs parents.  (Communicate!  Check.)  I love your final thoughts, There is so much good in this broken world; you just have to look for it.... Choose joy.  Choose Love.  Amen and amen.   Thanks again Jessica, this was wonderful.   

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!