Random thoughts from a special needs mom...

Every quarter or so I get progress reports from Joe and Christine's teachers.  I know its just part of the process but sometimes I want to just put them in the ever growing folder of papers that I don't want to look at.  They are graded on a scale of 1-4...  we get a lot of 2's (minimal progress) , intermingled with a couple of 3's (progressing).  Frankly, I don't think their goals have even changed all that much since they started First Steps.  Oh sure, we reword them from time to time but when it comes down to it they are the same goals.  Independence being a big grander goal that may just be out of reach.

After Christine I switched Christine to four days at developmental prek (she is in a morning half/day class) instead of two.  I had been resistant partly because it makes it difficult for Nate and I to get out and do things both independently and with our homeschool group when we have to be back to get Christine off the bus.  But I think it will be beneficial for her to get challenged at school the extra days and it will be good for Nate and I to have more one-on-one time together.

To be honest, I have really been struggling with our diagnosis of "autosomal recessive disorder". When I saw the genetic neurologist at Riley regarding both Joe and Christine he said that because we have two children with similar developmental difficulties its most likely caused by ARD.  Isaac and I must be carriers of a genetic abnormality that would only be problematic when paired with another person who carries that same abnormality.  That makes our chances of having a child with special needs 1 in 4.  One in four chance.  And we already have two out of three.  Its overwhelming to think about those odds. 

A friend of mine who also has a son with special needs commented that if we lived with a handicapped child 100 years ago it would have been totally different.  We wouldn't have near as much of the pressure to "fix" them.  It would have been accepted that they were going to be different and that would be that.  They didn't have doctors and therapists in all different specialties to be pushed onto you.  Sometimes it feels like everyone I meet has this book or therapy suggestion or that doctor to refer... not to mention the internet.  Its information overload sometimes.  I'm not saying it would have been better... just different. 

I don't ever want to give the impression that my children are not blessings because they are.  But my plate is full. The thought of having another child special needs or not is enough to make me tear up.  How could I even have enough energy to nurse and care for another baby?  I feel like I can barely keep going as it is.  I often have to remind myself that God is carrying us, helping us and teaching us through this experience. 

I recently told a friend about a blog post I read from a dad of a special needs son. He talks about how he dreams about when he will someday see his non-verbal, wheelchair-bound son in heaven... walking, running, talking.  Its a beautiful picture painted by this dad that I have often dreamed myself of my own special needs children.  It brings me to tears just sharing about it.

And it makes me wonder something.  I have all these questions I want to ask God.  Why us?  Why my children?  What really caused them to have developmental delays?  Was there a magic cure that we just never found/tried?  Did I learn whatever it is You were trying to teach me?  The list goes on and on.  But what I wonder is if all those questions will matter when we get to heaven.  Will we get time to sit down with God and have those questions answered?  Or will we be so perfectly happy to be with Him that none of that will matter at all anymore? 

The Fault In Our Stars

My sweet new cousin-in-law and I are nerds.  In the best way.  ;-)  We both read young adult fiction.  And technically, we're not young adults anymore... just regular adults.  Anyway, we read The Fault in Our Stars by Indianapolis' own John Green. (Which is soon to be released as a movie!) Its about two teens battling cancer and the struggles they face.  Its deeply moving and takes you on a roller coaster ride of emotions as you read it.  I am eager to see it come to life in the movie.

**added the trailer that was just released!!  AH!!  Can't wait to see it!

One cool thing about the book is that throughout John mentions locations around the Indianapolis area.  We were inspired by this fan's The Fault in Our Stars Photo Tour and decided to take one of our own. So we spent an afternoon going around town to different spots that were in the book!

Castleton Square Mall Food Court - super exciting start.  ;-)

We had a late lunch at the wonderful Three Sister's Cafe.  I mean, what is a girls day out without some really great food?  ;-)  Plus it was another Diner, Drive-in & Dive place!

The ruins at Holliday Park

The Funky Bones sculpture at the IMA's 100 Acres


We had such a fun day getting to know the city and each other better.  I am looking forward to many more outings together in the future!  And I'm pretty sure we're going to see the movie together.  ;-)

Special Order

Last summer I had a special order (it was actually a barter with the photographer who did my boudoir session) for some adjustable headbands for newborn/toddler photography.  I have used elastic headbands before but had never made them truly adjustable before.

  So I took the challenge and used a combination of elastic lace and velcro to make these pretty little headbands.  The amount of adjustability is based on how big the flower/embellishment is - it varies from 1-2in up to 3-4in. 

The video shows how the adjustable part works.  Its all hidden under the flower.  I was really happy with how they turned out.  And so was the client!  ;-)

Saying Goodbye to Survival Mode

Calling the super busy,
the stressed out, the overtired.

You know you're made for a more fulfilling life. With this book, you’ll know where to start.
You wake up tired. Your to-do list is too long. The commitments—and the laundry—are piling up, but your energy keeps dwindling. You feel like you're simply making it through the days, not living or enjoying any part of them.

- See more at: http://moneysavingmom.com/survival-mode/#sthash.qK9nlASE.dpuf

You know you're made for a more fulfilling life. With this book, you’ll know where to start.
You wake up tired. Your to-do list is too long. The commitments—and the laundry—are piling up, but your energy keeps dwindling. You feel like you're simply making it through the days, not living or enjoying any part of them.
- See more at: http://moneysavingmom.com/survival-mode/#sthash.qK9nlASE.dpuf

 I don't know if I always convey how tired I am on a daily basis.  I usually feel like each day is just something I have to get through to get to the next one.  It sounds terrible to say it but its the truth.  I love my family, but I often feel like I've lost my way and don't know how to get a real functional routine in place that works for everyone in our house.  I feel like every day is a cycle of diapers and dishes, cooking and coping...  with no end in sight.  I'm just getting by.

Crystal Paine of MoneySavingMom has put her own journey into words to encourage other struggling moms to say goodbye to survival mode and say hello to loving their life! To jump start her readers she is offering a 7 day challenge leading up to the release of the book.

While the principles in the book will inspire you to make slow and steady changes that will result in a big transformation over time, the Say Goodbye to Survival Mode 7-Day Challenge is designed to give you strategies you can implement immediately for instant breathing room. Each day I am going to share content that I hope will help you shift your mindset, build momentum, and ultimately set you up to win. So let’s jump in!  
To be honest, I signed up for this course before the holidays and I just didn't take the time to get into it.  Life is always crazier than usual around the holidays.  Right?  So,  now that all the holidays are over, the snow days are past us (I hope!), I am ready to get some normalcy.  Not continue the chaos that has been our "normal" but to take steps toward making our life more enjoyable for us all.  I am ready to tackle the Say Goodbye to Survival Mode 7 Day Challenge!  
 

Calling the super busy,
the stressed out, the overtired.

You know you're made for a more fulfilling life. With this book, you’ll know where to start.
You wake up tired. Your to-do list is too long. The commitments—and the laundry—are piling up, but your energy keeps dwindling. You feel like you're simply making it through the days, not living or enjoying any part of them.

- See more at: http://moneysavingmom.com/survival-mode/#sthash.qK9nlASE.dpuf

“The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”  (Lam 3:22-23)

I've preordered my copy of Say Goodbye to Survival Mode on Amazon.  In the mean time, I am going to dive into the 7 Day Challenge!

Third Thursday Blog Hop - Love Your Dreams/Goals

I am a little excited to be attending Hearts at Home 's National Conference again this year.  It will be my third time attending and each time has been a true blessing. The theme this year is "Love Your Life".  Tying in to that theme will be the monthly Third Thursday Blog Hop themes...  this month is "Love Your Dreams/Goals".  Which is fitting since just a couple weeks ago I posted my New Year's Resolutions for 2014.  And I think that is a good way to start the year off, thinking about goals and dreams for the year ahead.
 
“Don't you find it odd," she continued, "that when you're a kid, everyone, all the world, encourages you to follow your dreams. But when you're older, somehow they act offended if you even try.”  ― Ethan Hawke

I can't even count the number of times I have had conversations with my son about not giving up, and working hard to achieve our goals, etc.  But when it comes down to it I tend to give up on my own goals just as easily as my own child does.  It is often easier to admit defeat than it is to forge ahead in the face of frustration and hard work. Or I end up on the side of fearing failure and neglecting to set goals to work toward at all because I know I'll fall short of my own expectations.

 photo source

“I believe that half the trouble in the world comes from people asking 'What have I achieved?' rather than 'What have I enjoyed?' I've been writing about a subject I love as long as I can remember--horses and the people associated with them, anyplace, anywhere, anytime. I couldn't be happier knowing that young people are reading my books. But even more important to me is that I've enjoyed so much the writing of them.”  ― Walter Farley 

"What have I enjoyed?"  I think I often get so caught up in what I "should" be doing that I forget to do things that I enjoy doing.  There is a common theme throughout my resolutions this year and that is being intentional.  I don't want to take the easy way anymore.  I want to work on my relationships.  I long to spend more time with the people that I love than hiding away in my little bubble at home.  I want to reach out to people even though it requires effort and planning and sometimes can be frustrating... but I want to shine the light of Jesus to those around me and I can't do that effectively if I retreat into my shell and don't get out of my comfort zone.

There have been times in my life when I was going through a really hard time and really needed to have someone reach out to me and encourage me and God put someone in my path to bring a meal or send a note of encouragement.  And it makes all the difference in the world sometimes. Then, there have been other times when no one stepped forward, no one reached out.  I don't want to be that person that chooses not to reach out to other women, especially younger women, new wives and moms who are struggling with their new roles. Maybe they are going through some of the same things that I went through.  Or maybe their situation is totally different but I could be a listening ear.  Its possible that they have no one else in their life to show them the love of Jesus.  I desire to really love my life and encourage other women to love their lives too.

Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.-  Philippians 3:13-14 ESV

If you take responsibility for yourself you will develop a hunger to accomplish your dreams. Les Brown
Read more at http://www.brainyquote.com/quotes/keywords/your_dreams.html#E7tfiMfsO3XIDPzr.99

If you take responsibility for yourself you will develop a hunger to accomplish your dreams. Les Brown
Read more at http://www.brainyquote.com/quotes/keywords/your_dreams.html#E7tfiMfsO3XIDPzr.99

I feel like the theme of Love Your Life was chosen just for me... because I struggle with that sometimes... but I know I am not alone.  Please pray for me (and all the other moms) as I (we) seek to truly love the lives that God has given us.  Check out the other great Blog Hop posts on Jill Savage's blog.

Body Image and Boudoir

 “There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty.”
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience 


Last spring, I stumbled upon a Groupon for a mini boudoir session.  At the time I thought I bought it on an impulse.  But not really... back when we had cable I used to watch this show on Lifetime called How to Look Good Naked.  It actually was more about embracing your body the way it is and learning to feel good about yourself.  They take everyday women with average beautiful (but flawed) bodies and help them out of the "why bother" rut and teach them to dress to compliment their figures.  And they ended the episode with a photoshoot.  Naked.  Ah!  Seems crazy, right?  Or is it?

I know I am not alone in not always feeling beautiful.  Most women I know struggle with this at some time or another.  Many authors and bloggers have tackled this subject including: Cecily's Facing my Reflection  and Kjersten's Mirror Mirror OFF the Wall. We all have been bombarded by what the media presents as beautiful and sexy and frankly most of us do not fit into the tiny box they've created.  Human beings are diverse and unique and our culture's definition of beauty is not. 

Aside from my internal struggle to be content with the way I appear on the outside... there is also my husband to consider.  He is happy with how I look.  But he also is surrounded by the world's version of beauty and it can be a distraction to him as well.  Some people may ask the question:  Should Christians do Boudior? Boudoir can be a blessing in a marriage. The article Christians and Boudoir says this:
So, why do boudoir? I once heard a pastor refer to a man’s brain as a Rolodex. A man has thousands of images that he is bombarded with every day. Some good. Some not. Some holy. Some not. And whether he knows it or not, he remembers them. Ever so often his Rolodex goes on shuffle and pulls up an image in his mind. These images could even be as old as a Playboy cover he saw years ago. Now, don’t go thinking men are sick. It’s just the way God created them. They are visual.
But, why should Christian couples be interested?
Because of my Christian convictions, I believe that boudoir photography is best used in the context of marriage. I think any man would be delighted that his wife (or wife-to-be) would think enough of him to give him a gift that takes a lot of courage and love to do. Now, remember that Rolodex, ladies, how much better and holier is it if your husband’s brain goes on shuffle and up pops a gorgeous image of you…HIS WIFE? He is now thinking of the wonderful woman God blessed him with! What could be more God honoring than that?





At first I was totally psyched about doing the boudoir session.  I made all these unrealistic goals to diet and lost X amount of weight before the session. As time went on and I realized that wasn't happening I began to become anxious about it.  Frankly, if it wasn't something that I had already paid for I might have backed out.

But we ended up making arrangements for someone to watch the kids and Isaac came with me.  We had silly conversations about what I should wear and how much to reveal, etc.  Isaac was supportive and only wanted me to do what I was comfortable with.  I searched Pinterest and found poses that I liked.  I tried to be as prepared as I could be.  I followed all the tips the photographer gave me ahead of time.  I picked out a couple of sexy things to wear.  I even practiced making a sultry faces... not a fan of that part.  Did my hair up all fancy - for me anyway.  I even got my makeup professionally done! I mean, if I'm gonna do it I want to do it right!  ;-)

I was surprised at how comfortable I was during the photoshoot.  The photographer was very professional and put us both at ease.  She was very open to suggestion and did her best to work with the poses that I had collected.  She took charge when needed and helped find ways to compliment my curves.  The time passed quickly - it was a mini-session after all.  Before I knew it she was showing us the proofs and we were picking out photos.  Now to be honest...  I was still overly critical of myself as we viewed the photos.  I was making a weird face (was that supposed to be sexy or constipated?) in this one, that one showed too many fat rolls, etc...  However, there were a few that I really did like and was happy with how they turned out.  And naturally, my husband liked pretty much all of them. 

This pix above was taken at our post-photo-session dinner date.  I don't know if you can tell... but I feel pretty.  ;-)  And more than that, I felt empowered and confident.  It was a liberating experience for me. 

So... while I am not saying that every woman should do boudoir... I do think its worth considering.  It was a blessing for my husband and my marriage and it could be for yours too.

Let thy fountain be blessed: and rejoice with the wife of thy youth.  – Proverbs 5:18

A loving doe, a graceful deer—may her breasts satisfy you always, may you ever be captivated by her love. -   Proverbs 5:19

This Year I want to....

Its New Year's resolution time.  Ugh.  Who actually keeps their NYRs?  I don't think I ever have.  Well, I guess I may have kept some in my lifetime...  but none come to mind.  I think I've had the same few a dozen or more times.  And then there are the years when I try to prove something by not having any resolutions at all.  Or some years I will make goals that are really vague so its difficult to gauge progress or achievement.  What does that really prove?  Maybe it shows that sometimes I'd rather not try at all than to try and fail.

But what kind of an attitude is that?  I think its good and healthy to set goals for ourselves.  Its good to work hard toward something, even if you have fallen short, you still learn and grow from the experience.  So, 2014 will be a year with resolutions for me.  As I was working on what those goals would be I found this post to be helpful.  I wanted to find reasonable goals in several areas of my life.


For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  -  Jeremiah 29:11

God cares about our lives, our plans.  He wants what is best for us and desires to see us succeed in life.  God wants us to pursue Him and a life lived for Him. 

photo source

2014 Goals
(in no particular order)


Intentional Parenting

“And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. You shall write them on the doorposts of your house and on your gates.” Deut. 6:6-9

So much of the time I feel like I am just doing enough to get by.  I care for them, keep them fed and clothed and all that important stuff...  but I don't always take the time to just love on them, to hug and kiss and be silly.  I spend more time disciplining and teaching them what not to do that I miss out on the opportunities to show them what to do.  I want to show my children Christ's love

Purposeful Passion

 ...each man should have sexual relations with his own wife, and each woman with her own husband. The husband should fulfill his marital duty to his wife, and likewise the wife to her husband. The wife does not have authority over her own body but yields it to her husband. In the same way, the husband does not have authority over his own body but yields it to his wife. Do not deprive each other except perhaps by mutual consent and for a time, so that you may devote yourselves to prayer. Then come together again so that Satan will not tempt you because of your lack of self-control. -  1 Corinthians 7:2-5

 I love my husband.  So much.  And I enjoy him.  But life happens and my energy gets sapped and I think he feels like he's just another thing on my to-do list sometimes.  I want to make sure he knows how important he is, how much I appreciate his hard work, how much I am attracted to him, how much I respect and admire him...  I want us to really connect more and watch tv less.

Spiritual Growth

"Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. After he had dismissed them, he went up on a mountainside by himself to pray. When evening came, he was there alone..."  Matthew 14:22

I confess that I am guilty of letting my spiritual health fall to the wayside far too often.  There is so much happening on any given day that devotionals or prayer time just seem to end up at the bottom of the to-do list.  I know its harmful to me and subsequently to my family when I am spiritually dried up... and I think I have been for awhile.  I want to be filled up by Him.  And I need to be daily.

Weightloss

"Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your body."  - 1 Corinthians 19:20

I am kind of ashamed to say this but I know it'll be good to get it out.  I am currently about the same weight I was when I gave birth to Christine three and a half years ago.  Breastfeeding helped me lose most of my pregnancy weight without much effort but over time I have gained it back, and then some.  I am an emotional eater and focus more on the kids' nutrition than my own.  I'm not getting any younger and I want to get control of my eating and exercise habits before I hit menopause!  ;-)


Friendship

Colossians 3:12-14 Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. And above all these put on love, which binds everything together in perfect harmony.

I want to focus not on making new friends, but on being a better friend this year.  Sometimes distance and busyness keep me from reaching out and connecting with friends.  Or from taking the time and effort to take an acquaintance and developing that relationship into a real friendship.  I want to be the kind of person that I would want to be friends with.

Business

Deuteronomy 8:18 NIV But remember the LORD your God, for it is he who gives you the ability to produce wealth, and so confirms his covenant, which he swore to your ancestors, as it is today.  - See more at: http://succeedasyourownboss.com/04/2012/12-bible-verses-every-small-business-owner-needs-for-2012/#sthash.wF4uP1Ng.dpuf

But remember the Lord your God, for it is he who gives you the ability to produce wealth, and so confirms his covenant, which he swore to your ancestors, as it is today.  -  Deuteronomy 8:18

Deuteronomy 8:18 NIV But remember the LORD your God, for it is he who gives you the ability to produce wealth, and so confirms his covenant, which he swore to your ancestors, as it is today.  - See more at: http://succeedasyourownboss.com/04/2012/12-bible-verses-every-small-business-owner-needs-for-2012/#sthash.wF4uP1Ng.dpuf

Deuteronomy 8:18 NIV But remember the LORD your God, for it is he who gives you the ability to produce wealth, and so confirms his covenant, which he swore to your ancestors, as it is today.  - See more at: http://succeedasyourownboss.com/04/2012/12-bible-verses-every-small-business-owner-needs-for-2012/#sthash.wF4uP1Ng.dpuf

I do a little photography on the side to supplement our income.  And frankly because I love doing it.  Sometimes I can't tell if its a hobby or a business.  I want to work on building my photography skills as well as my business skills.  I am not looking for a full time job, but I want to build something that I can be proud of and that can help support my family.


Well, in some ways my list seems incomplete... in other ways it feels insurmountable.  But regardless of how much I accomplish this coming year I know I will have grown, and made progress and isn't that all we can really ask of ourselves anyway? 

What are your goals for 2014?