Tuesday, April 22, 2014

The Making of a Prom Dress

OK I know it's just a prom dress.

But it was also one of those all-consuming, weeks of work, totally over our heads challenges that I am so pleased with how it all turned out.  The fact that this was almost a complete train wreck, makes the outcome that much sweeter.

See this girl in our church (the beautiful lady pictured above) asked my friend and I if we'd make her a prom dress.  Of course we said yes.  Enthusiastically yes.  That was before she showed us her inspiration photos at which point I had my "oh crap what did we just get ourselves into" moment.  But we weren't going to back out now.  About 2-3 weeks in, after already working on the dress for days and days, with another fitting gone awry realizing that we were going to have to start over--again--the mom pulled us aside and said, Listen you guys, you don't have to do this.  I know this is a lot of work and just let us know and we can go buy a dress, is not too late to call it quits.  My friend and co-seamstress Melissa said, No I'm good.  I'm not burned out yet.  I nodded in agreement.  Lets just say it was a good thing Melissa was there as I might have pulled the rip cord at that point.   I too wanted to move forward, if for no other reason than for my pride, but it wasn't looking good.  And I have a newborn.  And I'm moving soon.  And I'm sick.  And, and, and...

So yes, it's just a prom dress.  But some good lessons can come out of the making of a prom dress.

First, this was not something either of us could have done on our own.  Sure there was the time aspect, but also the skill level and the tools meant this really was a team effort.  Individually Melissa and I were totally in over our heads.  Collectively, just a little in over our heads, but friends... it felt good to be in over my head.  Of course that's easy to say now that we pulled it off, but being just a little out of your league or past your skill level and certainly past your comfort level, well thats where change occurs...that's where the magic happens.  OK I just quoted Jillian Michaels from my workout video this morning, but it totally applies here too.

In fact let's just run with the workout metaphor for a minute.  See I did this one Jillian workout for about a year and it was friggin' hard every time.  Everytime I could barely eek out those last push-ups and the final cardio moves.  Eventually I got bored and wanted a different workout and purchased a different Jillian DVD.  Well this one was even harder.  Like SO much harder.  But I started doing it and working my way though all 4 levels.  One day I decided to go back and do the old work out I had spent about a year doing and it. was. a. breeze.  I couldn't believe it.  Then I realized that doing the same work out over and over wasn't really making me stronger, I was just sort of maintaining what little strength I had.  It wasn't until I started pushing myself to do something harder that I got stronger.  I mean the old DVD was hard--it really was.  But the new DVD was too hard, as in I couldn't do some of the moves and I often fell to my knees for a break.  But that's when I got stronger.  And that's what this dress was... a little too hard.  Just outside my skill set and comfort zone.  And that my friends, is why the magic happened.

Second, I mentioned this girl is a member of our church, The Church of Jesus Christ of Latter-Day Saints, aka the Mormons.  Mormons, well we're often considered a strange bunch.  As a people we have our own language and mannerisms.  I'm not sure I've ever had a proper dinner party, but a million pot lucks and Sunday dinners?  Sure.  I grew up going to Stake dances, but not steak dances.   I addressed my friends' parents as Brother and Sister So-and-so rather than Mr. or Mrs.  I belong to a women's organization known as The Relief Society, and I believe in prophets, visions and angels.  To me this all seems very normal, yet I know that from an outsiders perspective these things can range from quaint and simple-minded, to straight up whacked.

It's not that I feel sheepish about my beliefs--I really don't.  But I watch the same shows you do, I see the same movies and I read the same news... organized religion as a whole is often portrayed as belonging somewhere on the scale between outdated moral code to manipulative brainwashing.  However religious differences aside I think one thing that most people can agree on, is that helping one another through service or whatever you want to call it is always a good thing.  And I'm proud to say that us Mormons... we're good at that.  There is a strong sense of community within our membership.  Having lived in multiple states over the years, the Church (as we call it) has been our extended family.  When we first moved to Cincinnati a woman I had never met picked me and PSP up from the airport and drove us to our new house.  Her husband who we also didn't know previously, was at our house with B helping to unload the moving van.  I've had church friends clean my house while I was relegated to bed rest, tend my children and essentially nurse me back to health after a severe bout of PPD.  In fact as I talked to my friend while I was on the cusp of a mental breakdown she told me she would come over and help me with my kids that week.  I asked her what we were going to do if I needed help for a long time?  She said, and I'm paraphrasing here, We will make a schedule and get you the help around the clock for as long as it takes.  This is what we do.  Of course I didn't end up needing help that long, but I knew she was right.  If I needed it, help was there.  I'm not trying to say that we have the monopoly on goodness or even service, we don't.  But I do think there is something remarkable about our community in this aspect.  And honestly, these examples are super common and pretty small potatoes when it comes down to it.

About a week or two before we were asked to make this dress a man was baptized into our local congregration.  He was given a blessing in church the next day and while I don't remember anything else that was said during this blessing I do remember these words, Your problems, are now our problems...  Admittedly, there is a certain Godfather-like ring to those words if you want to see it that way, but the fact is he's right.  I thought about those words when our young friend asked us to make her prom dress.  To a couple friends I jokingly said, This is what being Mormon is all about.  We do free crap for each other.  I'm really not trying to make this out to be more than what it is... it wasn't life saving or life changing, I know it was just a dress.  But it was a lot of work, a lot of hours away from my family and ultimately a connection to the very core of what it means to me to be a member of our church.  Out of all the things that make me a Mormon"doing free crap for each" other happens to be one of my favorite parts.

Friday, April 18, 2014

Special Needs Spotlight || Imogen

Hi.  My name is AnaLisa and I am a mom to a beautiful 3 year old and a really active 23 month old.  My husband and I currently live in San Antonio and are just enjoying life.  Our daughter, Imogen, was born a healthy, normal baby girl.  When she was 21 months old we found out she had a mutation in her MECP2 gene, which meant that she might have Rett syndrome.  One month before her third birthday she officially got diagnosed with Rett syndrome.  She doesn't walk or talk but has some hand function and is the happiest little girl.  She is the sunshine in our lives and we feel blessed to be her parents.


Miggy:  Hey AnaLisa!  So excited to be spotlighting you and sweet Imogen today--especially since we actually get to see you guys every week at church!  So like many kids your Imogen was born seemingly healthy, then started to regress around 18 months old.  Can you take me back to those first signs that something wasn't right?  How long did it take for you to get a diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

 AnaLisa:  We first noticed something wasn't right when she was 9 months. She wasn't crawling or attempting to and was not sitting up.  We were also struggling to get her to gain weight. She was diagnosed with hypotonia or low muscle tone at 9 months but we were told that most likely she would grow out of it.  She started therapy and her improvement was very slow going.  At 15 months we added OT and speech to her therapy.  At 18 months she started finger wringing I had heard about Rett syndrome from another mom at church and had researched it.  Her neurologist also had hinted about it and I was worried that she had it. So we had her tested when she was 20 months and got our answer at 21 months.  Though she wasn't officially diagnosed for another year and a 2 months. Our journey was about 2 years.  When I first found out that she had a mutation I was devastated and then hopeful.  I allowed myself to mourn for a couple of weeks and then remembered that she hadn't regressed and that she could be a mild case. I did cry a lot but I also had a newborn so I had to be strong.  My husband was also my rock and kept telling me how amazing and awesome she was and how everything was going to be alright.  When she was officially diagnosed,  I was a bit sad but it didn't last long as I had a whole year to prepare for it. I just thought that she was going to rock it and prove everyone wrong.  I am in a totally different place now than when I first received her diagnosis.  I am excited for her future and can't wait to see what she can accomplish.  I feel like the sky is the limit.  I think part of it is that she is an amazing girl and part of it is that there are amazing doctors that are working hard to find a cure and treatments to help unlock these girls.  

Miggy:  Explain how Imogen's needs affect your day-to-day life?  

AnaLisa:  Imogen depends on us for everything. Even though she can finger feed herself and grab a preloaded fork feed herself with it; I have to supervise her.  I have to change her diapers and I have to figure out what her wants and needs are as well.  When we go to the park,  I have to leave her in the stroller so I can run after her little brother unless my husband is with us. I can't just go to the zoo by myself with them as I need help so I can look after her brother.  I am hoping that will change some as he gets older. I also can't leave her by herself for small amounts of time for fear of her falling back and hitting her head.  We are very lucky that she is pretty healthy and does not need a g-tube or have any extensive medical needs.  Her main issues are with her gross and fine motor skills.

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

AnaLisa:  I worry about whether or not she is going to be accepted by her peers and whether or not she is going to be mistreated at school and us not knowing about it.  So far or fears have been for naught. It is always hard when you have a nonverbal child and they can't tell you what is going on.  I just really hope that people will see her potential as much as we do and that they will treat her with the same amount of respect and dignity that they would any other person.

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

AnaLisa:  I really want people to know that she understands everything that is going on around her.  Just approach her and speak to her like you would any other 3 year old.  She might not respond the way that you would expect her to but she really does get it.  She has a way of communicating with her eyes and facial expressions that if you just pay attention to you will know what she is trying to convey.  Plus she has a wicked sense of humor.  In general,  I think that people just need to be understanding and less quick to point out differences.  Yes,  I know that my daughter is mouthing after she put her hands on your dirty store floor but you don't need to point it out nor do you need to make eww sounds or ugly faces.

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 son his relationship to Imogen?

AnaLisa:  He can be so helpful and really sweet to her.  I have found him comforting her when she is upset or trying to give her her pacifier.  Once when her cousin took something from her,  he grabbed it from him and gave it back to her.  I am really excited to see their relationship grow as they get older.

Miggy:  Right now your family is preparing to go to Boston for Imogen's medical care.  I'm curious to know more about the treatment as well as how a family prepares for a journey like this.  Is this a special program you had to apply for?  Cost wise, is it strictly out of pocket or is there any help for families who face the dilemma of getting medical care a long way from home?

AnaLisa:  We had to apply for it.  When we first inquired about it she didn't qualify because she was too young. I had heard that they were having trouble recruiting families so we figured we would try to apply. We hadn't heard from them so on her third birthday we decided to call them. The day before they had decided to lower the age requirement and they were about to call us. We applied and four weeks later we found out she cleared the pre screening. The clinical trial is for the treatment of Rett syndrome with IGF-1. It is supposed to help with their breathing problems, hand movements and other symptoms.  Some girls had regained some of the skills they had lost.  Unfortunately since rett syndrome is rare there isn't a lot of funding for clinical trials so all travel costs are incurred by the families.  There also are not a lot of organizations that help with traveling costs for clinical trials.  I know some families are holding garage sales and other fundraising activities.  We started a crowd funding site and we are also planning on holding garage sales and zumbathons.

Miggy:  If you could say something to the mom who just starting on this Rett's journey, what would you say?  What would you say to yourself if you could go back in time?   

AnaLisa:  Don't give up hope.  There are currently 4 clinical trials that are happening right now.  The amount of research and the progress is astounding. If a  cure is not found in our lifetime,  I truly believe there will be viable treatments.  Also,  don't forget that she is the same girl.  I wasted so much time waiting for her to regress when I found out that she had a mutation that I forgot to enjoy her.  I would tell myself that everything is going to be Ok and that she has a bright future.  I would tell myself to enjoy her for her and enjoy all of her accomplishments without wondering if they were going to go away.

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

AnaLisa:  There are so many.  I think the biggest lesson I learned is one of faith and hope. My faith was pretty shattered and I almost lost my belief.  It took me some time to see the blessings that were coming into my life because of her.  I learned that miracles can come from ways that are not expected. Another lesson that I learned that is equally important is to enjoy life and every milestone.  I think sometimes I am really easy on her brother just because I am thankful that he can do things that she can't.  I once heard a mom tell her daughter that she was sick of hearing her talking and to be quiet.  It took everything in me not to turn around and tell her how lucky she is that her daughter can talk and that she needs to appreciate it.  I really try not to take life for granted any more.  I also do not judge parents whose kids are acting up.  Imogen looks "normal" but she isn't. That kid throwing a fit at the store might have autism or sensory issues.  Don't judge parents, you never know what their life is like.  I also just want to add some links that might help others learn about Rett Syndrome or a little more about us.
http://rettsyndrome.wordpress.com (This one talks about current research.)
https://rally.org/crandall_boston (A little more about our story and our upcoming trip to Boston.)


Thanks so much AnaLisa!  That was fantastic.  I love seeing our girls at church in their matching pink wheelchair/power chair's.  They are so cute together.  I'm so glad that you advised people to talk to Imogen like they would any other 3 year old.  I admit that before I started this series I would not have known to do that--seems so obvious to me now!  But like you said, Imogen understands everything around her and I think a lot of people with differences understand more than we may give them credit for.  And for those who don't cognitively understand, they still deserve to be treated with the dignity and respect that you would give any other human being--so either way it's just a good rule of thumb.  Thanks for sharing your story and hugs to those beautiful babies of yours.  

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 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!