Friday, October 24, 2014

Special Needs Spotlight || Bridger




Hey guys. You're going to love today's spotlight.  As hard as it is finding out that your child has special needs, imagine how much harder it is not having a name for those needs.  Which means you also lack a clear, long-term prognosis.  I think children and families who fall under this umbrella of "multiple needs, yet unknown diagnosis" have even more on their shoulders than your typical special needs families.  What I love about Chelsea's spotlight is that while she doesn't shy away from how difficult this journey sometimes is, the fierce love and joy she feels about being Bridger's mama completely shines through. Please enjoy!  


Hi, I’m Chelsea; wife to the most amazing, giving, and selfless husband, Cade, and momma to three beautiful children: Brecken (7) Braylee (4) and Bridger (15 months). We live in central Utah where Cade is a gun salesman and I am an elementary teacher for the Utah Online School and also run a new pillow business (www.facebook.com/thepillowpeeps) to help cover our mounting medical expenses.  Bridger, our 15 month old, has an undiagnosed leukodystrophy, which is a central nervous system disorder that causes him to be floppy with low tone.  He struggles to even hold his head up by himself.  On top of that, he was born with cataracts on both eyes, profound hearing loss, and cyclical vomiting. He has had the Nissen surgery and also has a G-tube.  This journey we have found ourselves on is one we never envisioned, but has changed our lives forever.


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Miggy:  Thanks for being here today and sharing your family with us in the special needs spotlight. When did you first start to see signs that things weren't "right" with your son Bridger?  At what point did a doctor (or doctors) confirm your fears and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?


Chelsea:  We started noticing many red flags with Bridger as he grew.  By the time he was four months old, the flags were so red, we knew there was something wrong.  After seeing a pediatric neurologist at Primary Childen's hospital, Bridger had some testing done, which included an MRI, an ABR, and blood work.


The ABR results were instant.  As the audiologist told us Bridger had ‘profound’ hearing loss.  This news left us numb and completely devastated.  As for the MRI results,  I received a call from the doctor with the results on February 14, 2014, while walking into the elementary school to help with my sons Valentine’s class party.  I remember the doctor say, “I wish I was calling with good news, but I’m not.  What we found is not what we wanted to see….” I felt my heart break into a million pieces as he explained the results.


Even now, the reality of Bridger’s disabilities can be daunting.  My heart yearns for him to see clearly, hear perfectly, talk, crawl, walk, and do everything that a typical 15 month old should be doing.  I still yearn to have a diagnosis of what leukodystrophy he has so we have a better idea what our future holds. Seeing how well adjusted and pleasant Bridger is, though, helps me to realize that his journey in life is going to be beautiful.  I am so blessed to be along for the ride.



Miggy:  Explain how your son’s needs affect your day-to-day life and your family on a whole?  


Chelsea:  Bridger requires constant 24 hour care.  Between his 8 different doctors and 5 therapists, we are constantly juggling multiple therapy and doctor appointments. This takes up quite a bit of time and can be financially straining.  We have tried so hard to find the balance between getting Bridger the help he needs while balancing our lives with two other children.  


We continue to enjoy doing things together and want Bridger to experience all kinds of adventures.  It takes a lot more time, packing, and thinking through every aspect of the activity and how we can make it work for Bridger, to include him in these outings as a family.   Together, we have been able to experience theme parks, camping, boating, swimming, water parks, fishing and much more with our little Bridger.
        
                                                              
Miggy:  What are the biggest worries you face for Bridger?   


Chelsea:  My biggest worry is as he grows, that I won’t be able to have the physical strength to lift and care for him. I also worry about communication with Bridger.  With his inability to hear and his floppiness it makes sign language difficult.  I’m sure we will figure out a method to communicate with each other.  Only time will tell…

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?  


Chelsea:  I completely believe that having a sense of humor is required with these special needs kids.  One day in church Bridger, who laughs randomly, had a giggle fest.  And he giggled and giggled for a good 10 minutes.  It was the most inappropriate time for laughing, but it put many smiles on the faces of those around us. I wasn’t about to shush him.  His giggles are too priceless.




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


Chelsea:  There is nothing more I’d rather talk about than my children.  I thrive on people asking about Bridger and interacting with him.  I’ll never forget the first time someone approached me and said, “Tell me about your son..”  I about cried.  It was so thoughtful and meant the world to me that someone would take the time to understand this precious little soul and his myriad of physical impairments.

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


Chelsea:  I am continually learning lessons each and every day, both big and small.  Most days I don’t feel worthy to be Bridger’s mom.  He is so patient and accepting of his physical challenges. I never knew that even the tiniest of milestones or progress could steal my breath away and leave me in tears. I’ve also come to realize that no matter your challenges, never stop appreciating what is good in your life.  When you look for the good, that’s what you’ll find.


I’ve learned I can do hard things.  (one little example… being able to insert and remove a contact lens on an infant…I’m proud to say, I CAN DO THIS!) I’ve learned more medical information this past ten months about our eyes, ears, brain, stomachs, and such then most people will ever know in a lifetime.  I know Bridger has come to this earth to teach me, my family, and many others, lessons that could be learned no other way.  He is angelic, pure, and oh, so sweet!  How blessed we are to have him in our home.  I feel it such an honor and privilege to say, “I am Bridger’s mom!”
To keep up on our family check out our blog:  www.cadeandchelsea.blogspot.com and also don't hesitate to check our our pillow business at www.facebook.com/thepillowpeeps.   Proceeds go to help pay Bridger's medical expenses.

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Thanks again Chelsea. And can we all just give you a standing ovation for being able to put contacts on an infant!?! That's amazing. I LOVE what you said near the end--"No matter your challenges, never stop appreciating what is good in your life." Right? Brings tears to my eyes just thinking about it. And like you, I too have learned positivity from my daughter (and others with disabilities) as I have learned that she is completely comfortable in her own skin and does not feel sad about her disabilities. Our kiddos have an innate patiences with their bodies because they don't see the limitations, they just are who they are. Thanks again for sharing your beautiful family with us today Chelsea. Much love to you and your kiddos!


You guys! Please help me spread the word about the spotlight! I'm always looking for families to spotlight, so please send some my way. However, one thing I ask is that you don't email me with their information and ask me to email them. This never results in a spotlight when when I chase someone else down, pitch them about the spotlight and ask for their participation. If they hear about it from you--a trusted friend--and are interested enough to email me, then they are interested enough to actually participate. Does that make sense? Thanks again for all your love and support and for making this series so educational and amazing to be a part of.  

XO
Migs

Thursday, October 23, 2014

She's Only 10 Months Old Once


The husband and I sat on the couch last night and recounted our already long but not yet done week.  The days... the days are so long.  To all you mama's who've been doing these long days for years, I tip my hat to you.  They are no joke.  We are both drained and exhausted by 8:00.  Then yesterday I had one of those encounters with an older mom who's youngest just flew the nest.  You know what's coming.  I knew what was coming.  The ol' "I wish I would have enjoyed it more..."  She was so kind and honestly wasn't trying to preach.  I felt that she really meant it, that she wished she would have enjoyed it more.  My response was something like, I try to enjoy the good moments but you know, some days are just hard.  She smiled and nodded.  This topic has been pounded into the ground and many horses have been beaten to death over this discussion of the older moms wistfully telling us harried, barely-keeping-it-together younger moms to 'just enjoy it, it goes so fast.'  I think we all know the truth--the universal truths that joy and hardship can coexist in the same day, even the same moment, that hindsight is 20/20 and that you can't teach an old mom new tricks.  That last one's a little iffy, but I think you understand what I'm saying.  Additionally there are the individual truths of our own circumstances--for some motherhood comes more naturally than others and perhaps that joy is more easily found.  For some there are battles with depression, finances, a spouse--or lack thereof, special needs, and special circumstances.  So I'm not going to rewrite the book on this one.  Hard days are hard, and I think we all search for the joys in our own ways and find the sparkles amid the dust.

For me, my gentle reminder lately has been she's only 10 months old once.  Then she's only 10 months old and 1 day once.  And so on.  When you think about it, it's a little crazy that we are only a specific age one time and that's it... it's gone forever.  I mean there will never be another October 23, 2014 ever again.  That's crazy right?

Of course I could also say the same about my 4 year old and 7 year old--they'll only be this age once--but right now it's all about the ever changing baby who just last week couldn't pull herself up, but as of a few days ago is pulling herself up on any and everything.  And so I stop and snap some photos of Baby Zuzu climbing onto her big sisters toddler bed and watch--without rushing in to help--as she confidently makes it to the top of the bed, sits up and claps.  A few seconds later she sits her booty down right on the edge and promptly falls over backwards totally unfazed since the bed sits so low.  And she tries again.  And I let her fall.  Better to learn on a low bed when the stakes are small I say.




I am not going to remember anything else that happened yesterday on October 22, 2014.   But if I go to the archives of my blog (which hopefully I'll still have) I will see this post and these pictures and remember a sweet little baby who was 1 day shy of being 10 months old.  And I will see proof of a moment I enjoyed.  The whole day?  Probably not.  But this moment I savored, watched and observed.  And that is a gold star in my mom book right there if you ask me.

And last week, when I had a sick baby on my hands I tried to find the sweetness amid the sickness.   Like a baby who still manages a half how-big-are-you? smiles and all, even though you can see the sickness in her eyes.  Sweet baby girl.


And while I normally just give her a bottle before naps and bedtime, having a sick baby forced me to slow down and rock her before bed, something I've now continued because she's only 10 months old once.  And these are the prime cuddle hours people... I cannot get cuddles like this any other time, so I am going to get 'em while they're hot.

Anyway, that's my mantra lately.  Hasn't always worked, won't always work in the future, but it works right now.

Anyone else have a mantra to get you through a rough day, week or even a particularly rough period of your life?  What are you tips for slowing down and enjoying the phase of life you're in?  Because that's the other thing, no matter what phase of life you're in I think you should enjoy the gifts that particular phase of life has to offer!  If you're single enjoy the benefits that only come from being single.  If you're married without kids, enjoy the benefits that come with being married without kids.  Same goes for having kids and all the stages of their childhood.  AND if you're a new empty nester, try to enjoy the benefits that come with that phase as well!  Thoughts?  

Tuesday, October 21, 2014

DIY Halloween Wall Art



You guys, this is a super easy, last minute Halloween decoration you can whip up before the kids get home from school and they will think it's so cool you painted on the walls.  That's exactly what my kids (and husband) thought when they walked in last week to see my spooky wall mural.  To be honest I was originally going to do this on the driveway but it just kept raining, that's when I had the idea to try it on the walls and I think it turned out great!  And the paint is only 2 ingredients that you probably definitely have on hand.

Supplies:
Corn Starch
Water
paint brushes



You've probably seen this sidewalk paint on Pinterest.  It's the same thing, but with a dark wall I omitted the food coloring and just used corn starch and water for a pure white.  I think this white color would work on lighter wall colors as well--it would just be more subtle.  Now if you wan to try this on a white or light colored wall and use food coloring to color the corn starch mixture, then please for the love, test it on a small patch in the back of your least accessible closet or something and let it sit for a few days.  I have no idea if food coloring will stain white wall paint.  So use at your own risk!

Here we go!
Step 1.  Mix equal parts corn starch and water (I used 1/2 cup of each and it was plenty)
Step 2.   Paint on wall.

As you can see it goes on almost clear but then dries to a chalky white.  Also, keep mixing the water and corn starch as the corn starch will continue to settle to the bottom throughout the painting process.



The thing that makes corn starch paint so challenging to work with is also what makes it great for doing a Halloween wall--it drips!  And drips and drips.  Perfect right?  Even though it really adds to the spooky Halloween feel I still wanted fewer drips.  To minimize drips make sure to wipe the excess off your brush before painting, and if it's still too drippy after that just wait for the paint to dry and then wipe away with a wet rag.  Easy!  Also you'll get drips on your floor, but no worries.  This is so easy to clean up with just water and a rag.




My last tip, is to stick to large, easy shapes.  Trying to get too detailed with this will probably end in frustration.  Ghosts, tree branches, boooo, and a full moon.  Easy peasy.  Also you might try a wall full of bats, or just a bunch of Halloween words like Booo, Eeek, Trick or Treat and Spooky.

Other benefits:  Non-toxic and gluten free!  I love working with crafty stuff that I know won't hurt the kids when they inevitably lick the walls or smear the paint.  This would also be fun for bigger kids to do, but I'd put down a drop cloth to avoid big messes.  Clean up is super easy as well.  Just spray with a water bottle and wipe.

Happy Halloween!  

If anyone tries it out be sure to put it on instagram and tag me in your picture--I'd love to see!  

Monday, October 20, 2014

Fall-tastic Weekend



This weekend was a perfect mix of working hard and playing hard.  We tackled more house projects.  The unglamorous yet important kind as we can finally park a car in the garage--hooray!  But even in the hum-drum of tending to the house, with fall in full swing all around us it was like there was an extra character in our midst, you know like the distant relative you don't see very often but who always brings exotic treats when he comes to visit and so the excitement level is always elevated that much more?  Yeah, fall was our fun Uncle this weekend bringing a little excitement and elevating ordinary tasks with it's beautiful backdrop of leaves, sunshine and barely crisp air.  


B decided to go running on Friday and somehow it became a family run.  Lamp and Zuzu shared the double stroller, which technically isn't a jogging stroller, but somehow we managed, while PSP biked along.  B pushed the stroller most of the way, but I would take over to give him a break and sometimes we'd push together with one hand.  That's marriage in a snapshot folks.  


This also became the weekend where I overgrammed pictures of leafs.  (or is it leaves?)  I'm kind of obsessed.  Especially with these tiny yet perfect maple leaves.  What is it about seeing nature so tiny and still so perfect?  I think it a reminder of the whole Horton Hears a Who thing, you know, A person's a person no matter how small.  It's a little reminder that we all matter and we all contribute to the beauty of the whole.


Saturday we hiked, which was good for my soul and good for my Cincinnati love.  I decided that Cincinnati and I, we're an arranged marriage.  We didn't pick each other, but we're going to fall in love hard and have a beautiful life together.  I know there will be plenty of ups and downs ahead but I'm starting to come around.  Pretty right?         

And how cute is this little baby hiker?  She just kept resting her head on my back or leaning to the side to see what silly shenanigans her sisters were up to.


Family selfie.
And that's a wrap.
Hope you had a great weekend as well.

Thursday, October 16, 2014

Girls Are So Hard!



I love having 3 girls.  Individually, collectively I love it.  The dynamic, their personalities, the fancy stuff, the girly-girlness of it all.  I feel like I won the lottery.

Of course, OF COURSE, it should go without saying that had my lasses been lads, I would have loved them just as much.  Boys are awesome too.  In general, I'm a fan of humans.

But here's the rub... I can't count the number of times people have said, Oh boy... just wait until they're teenagers.  You're in trouble!  or Yikes, girls... that's a lot of drama.  or Girls are just hard!  Or something of the like.

And lets take a step back to get a broader look.  Mean girls--it's a cultural thing.  And trust me, I know it's real.  There are definitely mean girls.  I had my fair share of drama with the queen bee's of middle school and I was not completely innocent of mean girl behavior myself from time to time.  And I know this goes far beyond middle school.  Mean girls are a real thing at every age.  But often we talk about "mean girls" and it seems that we are creating the issue just by talking about it.  Again I'm not saying mean girls don't exist--they do. At every age.  Check and check.  But have you ever been together with a group of women and heard something like, Well you know how women are to each other!  We're just so mean to each other.  Women love to tear other women down.  I have totally been in that conversation.  Yet when I step back I think... Actually my friends are pretty freaking awesome and treat me well.  My women friends lift me up, help me when I need help and cheer me on when I need cheering on.  Yes there are mean girls, but on the whole my experience with other women in my life is and has been positive.  Like way disproportionately in favor of positive female relationships.  So I feel like talking about it the way we do--like this is just how we are so get used to it--sabotages ourselves and reinforces a phenomenon as 'normal' that I see more as an outlier.

So back to my girls... I don't like being told how awful it's going to be, how much drama my girls are going to cause simply because they're GIRLS.  I grew up with quite a few brothers and let me tell you, boys can be drama too.  Boys can be mean to each other, boys can hold grudges and boys most certainly can bully.

Often the way we verbally frame things can shape the outcome.  For example, if my husband and I say things like, Oh just wait until you're a teenager...then you're really going to blah, blah, blah.  Or when one of our daughters is being dramatic and we throw up our hands and say, Girls! then it follows that whole self-fulfilling-prophesy thing and we've just told our daughters that we expect bad behavior and that it is normal simply because they  are females.   For those of you who've talked with me about feminism before, doesn't this all feel very anti-feminist?  Yikes.  Why are we teaching ourselves and each other that females are so bad, moody and mean?  Of course this doesn't just happen in the context of girls.  Another example of this framing idea is when people talk about "middle child syndrome."  I feel like this is one of those issues people tried to push on me as a kid (and now even Lamp gets it!).  Oh well of course you feel that way, you're the middle child!, and I was confused then and am still confused now.  I didn't have issues with being a middle child, but I do remember taking cues from the adults around me and acting the wounded middle child part from time to time.  I'm not suggesting that we don't discuss things that need to be discussed, but that we're careful with how we discuss it.

I'm not naive enough to think that positive verbal reinforcement is somehow going to solve all our future issues that can come with teenagers and the female psyche.  The truth is we may have drama in our house as the kids get older.  And I do believe that girls on the whole come with different issues than boys on the whole.  But they're not worse issues.  And I'm not going to talk to my children as if I expect this behavior and I'm certainly not expecting it simply because they're girls.  


What do you think--are women really more drama than men?  Do you feel like you have more positive female relationships or more negative female relationships?  Are there mean boys?  Can anyone else relate to the idea of being labeled a certain way and then acting out to fit the label?  I'm not in favor of complete gender neutrality--I do think boys and girls are fundamentally built differently.  I just feel like we come down hard on females for behavior that is more of a human problem than a female problem.  I'm sure this goes both ways--what are you mothers of boys warned about?  Discuss.  


*Art--Backstage by Michael Carson

Tuesday, October 14, 2014

Fall


Oh the bitter winds are coming in and I'm already missing the summer.  Stockholm's cold, but I've been told that I was born to endure this kind of weather.    --Emmylou, by First Aid Kit


Sometime last week we started bundling up pretty well each morning as we walk PSP down to the bus stop.  Often by the late afternoon the weather has warmed up substantially, sometimes being hot even, leaving me tugging at my sweater and pulling off extra layers to absorb the last bit of this indian summer.  I've been saying for years how I've missed the fall and that I can't wait to see snow again.  But now that the colds almost here, I'm not sure I'm ready.  I've talked a big game, but I'm realizing that San Antonio has made me soft to cold weather.  

Fall is a season not really appreciated until you're grown up--at least that was the case for me.  I always considered myself a die-hard summer loving girl until sometime my mid 20's when I distinctly remember craving fall for the first time.  Sure the clothes are great--boots, sweaters, hats, scarves.  But fall is what sends you inside literally and figuratively as well.  Summer is outside, playful, fun loving and free spirited.  Fall is moody, introspective, unpredictable and thoughtful.  This desire for fall brought a shift in life perspective as well.  In a word--balance.  For a long time I wanted life to be summer all the time.  Figuratively at least, which is to say fun and free spirited.  But my mind and my spirit crave introspection, slowing down and even some dreary days.  After our first really intense summer in San Antonio we had a mild fall and winter and it seemed like summer was upon us again before we knew it.  I said to B, I'm not ready for summer.  We haven't earned it yet.  I don't remember feeling the same way the following summers... I'd gone soft.

While I've been waiting and craving this weather for years, now that it's here... I'm feeling hesitant.  Probably because I'm in a more fall phase of life right now as well and I worry that I've gone soft in more ways than one.  But as the lyrics state above, I think we're all born to endure this kind of weather.

On the plus side, the colors are blowing my mind.

Here are some of my favorite fall pictures so far.   If you follow me on instagram you've probably seen a lot of these.  You can follow me at thislittlemiggy.   








Friday, October 10, 2014

Special Needs Spotlight || Rachel


 


Hey guys, Migs here.  You know I used to write a little something before the spotlight and I think I'm going to give it a try again. So today's spotlight comes from Judy who is a mother of 3 grown children, one of whom--Rachel--was born with spina bifida. I'm so glad Judy was willing to share her story with us today as I always think it's valuable to hear from parents who have already been through the child-rearing phase of this journey. I appreciate Judy's candor--it was not and is not easy being the primary caretaker for a child, now adult, who is both physically restricted and medically fragile. Even the fact that Rachel was born in 1980--younger than me--makes you realize just what a different world Judy was raising her family in. Judy gives some great insight about how she and her husband have stayed connected over the years. Also, one thing I couldn't help think about over and over again reading Judy's words were how should legislation, regulations and insurance companies (I don't even know which would apply so I'm just using them all) be changed to be more beneficial for families who need additional help? I'd love to know more about these things. Anyway, please enjoy today's spotlight...it's a good one.



Hi, I am Judy and have  been married to my husband, Bob, for 41 years.  We have three children: Rachel, 34; Zachary, 30; and Molly, 26.  Rachel was born with spina bifida and hydrocephalus, although the hydrocephalus was not immediately apparent or suspected.  Prenatal exams and studies had not predicted that we would be facing anything troubling when our first child was to be born.  So, when Rachel was delivered, we learned only on the spot that she had an abnormality on her back - one that we suddenly learned meant she had myelomenigocele, more commonly known as spina bifida.


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Miggy:  Judy, thank you so much for participating in today's spotlight. You have a grown daughter, Rachel, who was born with Spina Bifida and who you raised her long before the days of Google and the internet. I always love hearing from parents who are further along in this special needs journey as I know there is so much that those of us still in the thick of child rearing can learn. So first, can you take me back to the day you learned Rachel had spina bifida? Do you remember how you felt, as well as the reaction from those around you? How has your view of this diagnosis changed over the years? (Or has it?)        

Judy:  At the moment of Rachel's delivery, what should have been an experience of sheer joy and relief, suddenly turned into an overwhelming crisis.  We were shocked, confused, totally unprepared and uneducated about what we were all to face, and we were suddenly barraged with misinformation mixed in with reliable information, but we wouldn't yet know the difference between the two.  I just remember being immediately, incredibly sad, and I remember that Bob was more or less trying to logically assimilate all the information and preparing to break the news to unsuspecting parents and grandparents waiting just outside.

When Rachel was born, 1980 was still the era of "Baby Doe," where some children with myelomeningocele were more or less given what would today be considered hospice care, at birth, without surgery or other treatments.  That's the way things were then.  The only informational resources available were the opinions of doctors, my husband's medical textbooks, or the parents of similar children.  Most of the medical information in print was typically at least ten years out of date, considering the early neurosurgical advances that were actually being made.  Fortunately, Rachel was born at a major metropolitan hospital, one where she was hospitalized for the first month of her life, so medical ignorance wasn't as rampant there as it might have been elsewhere.   On the other hand, no one at that hospital had advised us that there was a children's hospital nearby that was in fact one of the leading specialized centers for myelomeningocele. The hospital of Rachel's birth, now long defunct, had prided themselves on being a top notch medical center, so they did not refer us to the children's hospital.  We would have known that, had there been the Internet with a search engine back in 1980.  But, within a couple of months, Rachel began care at the more appropriate, specialized hospital.


Miggy: Rachel lives with you and as you explained is still very medically fragile. Can you explain how Rachel’s needs affect your day-to-day life? How has this changed over the
years? For example do you have other children and if so what was it like taking care of your daughter's needs while also taking care of other children? You also mentioned getting this diagnosis while your husband was in medical school...wow! I can imagine this brought a lot of additional stress to an already stressful time of your life.    
 
Judy:  Over the first few months of her life, Rachel had a few surgeries, and we gradually became the ones who knew her best.  Due to severe dysphagia, she was NG tube fed for the first nine months of her life, and I changed those tubes every three days, myself.  She did go on to eat somewhat normally, but only while being restricted to baby foods for the first three years of her life, while undergoing intensive physical therapy, occupational therapy, feeding therapy, speech therapy, etc. that she and I would travel to in order to receive.

Our next child, Zach, was born when Rachel was four.  It was a delight to have a "normal" healthy baby to deliver, nurse and raise, but in retrospect, Zach felt somewhat limited in his childhood by our availability, especially during prolonged hospitalizations, and because of his father's call schedule, and even because of my frequent appointments for Rachel.  Nonetheless, Zach and Rachel developed their own relationship, and we went on to have Molly, when Zach was four and Rachel age eight.  


Molly was born with ears that did not fully develop: bilateral microtia with atresia, and as a result, her prognosis for normal hearing and regular facial appearance was at first uncertain.  Very summarily, Molly had many reconstructive surgeries and ended up to be just fine.  We are looking forward to her wedding in May, 2015.
Rachel was actually more physically robust and independent when she was younger.  She rode in a little "Star Car" until age five, when she got her first manual wheelchair.  She has had several wheelchairs over the years, and even a couple of power chairs, neither of which was practical for her.  We have also had a succession of handicap accessible vans to accommodate our family travel needs.
In 1996, Rachel had very serious spinal surgery that left her with both a tracheostomy and a G-tube.  She slept with the use of a CPAP machine at night, and later it was a BiPAP machine, and finally a ventilator.  With time, the ventilator was needed around the clock.  Despite this, we have traveled as a family, even going on two cruises prior to her complete dependence on her ventilator, as recently as 2006.  

We never needed nurses to assist Rachel until after her 1996 spinal fusion, and then everything changed.  Following a three month hospitalization, we had in home nurses around the clock, but later less hours were covered by insurance, and eventually, we exceeded our insurance lifetime maximum benefit, leading us to find, fund and train our own nighttime nursing care, or doing it by ourselves, and sometimes with nurses helping out by day.  We've had over the years nurses who have been like family, and we have had nurses that were outright scary, but we developed a system, and we are fortunate to be getting by.

For the past several years, Rachel has been able to eat a fairly normal diet, but each meal takes up to two hours, and constant vigilance and suctioning is required for her to eat.  This is the most strenuous part of our day.  Until Rachel became permanently dependent on her ventilator, we used to travel as a family, and Bob and I would travel for long weekends once per year - now not so possible.   

Leaving the house with Rachel requires a lot of planning and equipment.  Between the ventilator and suction machine, both hooked to the back of the wheelchair, it can be quite exhausting.  This is something I worry a lot about, having the ability and strength to continue to care for Rachel’s needs as I get older.


Miggy: Judy I'm interested in hearing what childhood was like for your daughter--and
perhaps she can help answer this question as well.  Did she have friends, did she enjoy school? Was Rachel ever bullied or teased for being different? How did you handle this as a family and how did your daughter handle this individually? Any words of wisdom you'd like to impart on us younger parents when it comes to these things?

Judy:  Rachel only recalls two instances of being bullied in grade school and each time a teacher came to her defense.  Looking back on it, Rachel feels her childhood wasn't that dissimilar from anyone else's, with the exception of her surgeries, hospitalizations and therapies.  The kids she grew up with were generous in tolerating her physical limitations, and the friends of her brother and sister just accepted her for who she was, without any significant barriers.  The area we live in is one where people tend to be more inclusive, and it is fortunate that no one bothered her in that way.  I remember in first grade every Monday a new student was assigned to sit next to Rachel and be her helper.  One mom told me that the kids loved this opportunity and looked forward to being her helper.  Another mom, who was a nurse, insisted that Rachel join the Girl scouts and that she was well equipped to care for Rachel at the meetings.  It’s funny how these two kind acts are still so memorable to me.


Miggy: One of the things that has always been important to me is making sure that Lamp’s disability doesn’t define her life or our family.  Having a daughter who needs a lot of assistance I can imagine that finding a balance over the years would be difficult. Did you and your family make conscious decisions to help create some balance in your
lives? (Having help in the home, weekly date nights, etc?)

Judy:  We still make it a point of having date night every other week, it is so important and not one that should be neglected.  You can’t take care of others unless you first take care of yourself and your marriage.  Life is not easy for us, and sometimes it is hard to avoid judging those who complain about having much less to do.  I don't always feel part of the company I am with, and often feel like I am in my own unique category in life.  Despite all the pressure, the time constraints and financial hardships, we have always been able to have a good dog, a nice cat, and the freedom to pursue various hobbies.  Rachel, herself, does art.  I have done mosaics and knitting, and I love to read and workout.  Bob has sailed and ridden motorcycles most of his life, and he still does.  In his fifties, he became a flutist.  Rachel enjoys going to plays with me, listening to music and having Bob play Broadway music for her.  Humor has always been part of our personalities, whatever the situation, and it has remained that way.   



Miggy: Will you share one lesson or trait that you've learned from being a special needs
mom?
Judy:  It is easy to worry about what the future holds for your family.  Someone once advised me when Rachel was a baby to try to take one day at a time and to focus my efforts on the present.  I still find myself going back to that advice when I worry about our future.  You really can't afford to be afraid.  Work on establishing a vision for your special family situation and try to make it happen.
Thank you for this opportunity to share my family with you.  I have to confess that it was a bit painful reliving some of the more difficult challenges in being Rachel's mom, but at the same time I marvel at how positive she is in light of her medical needs.

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Judy, wow... thank you so much for sharing your story and your daughter Rachel with us today. You're a great mom. You probably know that, but I just wanted to reiterate it. Hugs to you and your wonderful family. I'm so glad you all have each other.

If you or someone you know would like to participate in the special needs spotlight series please email me--or have your friend or family member email me directly--at thislittlemiggy at gmail dot com.

Have a wonderful Fall weekend.