Thursday, February 26, 2015

A Letter To The Special Needs Mom

I saw you leave the office, with a wee one in your arms.  You were crying and quickly averted your eyes and tried to hide it.  Your daughter is beautiful, she gets that from you.  Although your heart is hurting now, for the many dreams that you had for the life of your child now lost, you will rise up stronger than before.  You do not know it yet, but this time of mourning and what you are mourning will in fact be your greatest blessing.  But do not rush things.  Mourning the loss of all of the dreams and goals that you thought would come is something you must do.  It is something that you will continue to do over the years at various points and everything is more difficult when you are tired.

That being said, resting is vital.  If you are unable to get a full night sleep because you are worried about your child, here are some things that we have done to make sleep possible.  In our situation our daughter has seizures every night.  So, for a long time our daughter slept in our room.  As she got older we got a lot of judgement on having her in our room.  Especially when people would see or hear that instead of having a master bedroom and a room for her, we had a room for her with her bed and a queen sized bed in it for us.  I would sleep there every day and Brendan would join me on the weekends. The other room had a bed for my husband to sleep in during the week, so that he would be rested enough to function for work.  There are still times during the day that I will lay down with her or "hold" her very tall ten year old self in my arms in the recliner and rest with her as she sleeps in my arms.  These moments are some of my most cherished!  Just a few short years ago she was more stable and we more confident, we moved her into her own room-the closest one to ours.  We got a seizure/movement monitor called an EmFit monitor.  We got a video baby monitor that allowed me to talk to her, hear her, and to see her.  We also made sure that she had a safe bed, and safe bedding.  Basically we thought through everything that we could do to ease our anxiety.  When I still couldn't sleep after all that we did I sought help from my doctor.  I was going to a counselor so I talked to her too and then the miracle for me came I learned that I had sleep apnea and was not getting past stage 2 of sleep.  I was literally waking up 59.6 times an hour!!  The first night I used the C-Pap machine I only slept for three hours but woke up and felt like I could run a marathon!! I fixed the problem of not being able to sleep and I was no longer anxious all the time.  It wasn't a magic fix, anxiety is still something that I deal with regularly (and is completely natural for parents of special needs), but when I have actually slept-even if it is for just a few hours-I am much more able to handle what the day throws at me.

Aside from sleep the very best advice that I can give you is this.  Trust yourself and your "instincts" "gut" "hunch" "feelings" whatever you want to call them.  You see your child 24/7 and know them better than any doctor ever will.  In fact the very best doctors will tell you this.  I am not saying to google symptoms, come up with a diagnosis and tell your doctors what is wrong:-).  What I am saying is that if you feel that your doctors are not listening to what you have to say...  If they are being dismissive or only taking into account some of the symptoms that you are dealing with, than you need to speak up for your child.  My biggest regrets over the years all stem from a time when the doctor was telling me something or not listening to what I was telling them and making a decision that did not make sense but that I went along with because they are doctors and I am not.  There have actually been a few times when if I had not spoken up it is very likely that Avagrace would not be here with us today, in fact the doctors told us that she wouldn't, it was a lesson for them and for us.  There are also times when if I had spoken up we may have gotten her the help that she needed sooner.

However, I mentioned the word regret.  Regret is a terrible thing and something that you should avoid at all costs.  I know that sounds like a no brainer.  But do try to steer clear of the what if's.  What if I would have pushed the doctors more when I felt something was wrong but they dismissed it with the blanket statement of "kids do weird things?"  Or what if this happened because of XYZ?  What if this is my fault because I carry a genetic defect or what if my husband and I together create a genetic defect?  Stop those thoughts dead in their tracks!  Shoo them away and never welcome them back!  YOU are in no way at fault for any of this!!  This is not your fault and there is no way to reverse time and take back the knowledge that you now have but didn't have then.  Moreover, there are more diagnosis out there than any one person could count or study.  In fact, we have met more doctors that do not understand our daughters diagnosis, let alone have seen it or understand it, than the ones that do.  Her diagnosis is a Neurological one and I am talking about Neurologists and ER docs and even pediatricians that had NO CLUE!  The good ones will say," I am not familiar with this."  They may ask you questions and hopefully will say "let me look this up and I will be back shortly."  So again, you are your child's best resource and you are an expert on YOUR child!  Nobody else will know as much about your child as you do.  Do not be afraid to question and speak up.  If your doctor is offended by this than it is time to move on to a new doctor.  If you do not have that option (we have been in this situation too) then pray and research doctors out of your area and look in to what it will take to get an opinion from a different doctor.  Many insurances cover out second opinions or changes in doctors.  Some do not.  It is a tricky situation to be in and I am not here to tell you what to do, but rather to encourage you to trust your gut and be confident in your wisdom about your child and work to find the best doctor that you can have.  This is invaluable.

If you are anything like me, you are much better at the written word, than the spoken word.  I can be a terrible communicator if I do not have something written down in front of me.  When I am writing the words just flow.  But when I am speaking, things come out jumbled, I forget names and words and I sound like I do not know what I am talking about.  So I have a file that I bring with me.  A small one to carry everywhere, and a larger one that I keep in our daughters "ER and Seizure bags" so that the info is available when it is needed.  I also have practiced explaining the diagnosis many times and will practice the points that I want to go over at the doctors office.  I will also bring a check list with my questions etc.  This might not work for everyone but it is a life saver for me.

When you were pregnant you prepared for everything, except this.  It is not a common for expectant parents to think about having a child with major medical challenges.  It may be a fear that crops up but usually that fear, unless tests and diagnosis show otherwise, is quieted by your doctors and family.  "It is not common" "There is no need to worry" "Everything is going smoothly"  "Everything will be ok."  And that is true, everything will be ok, but one persons ok is certainly different from your ok.  So take the time to mourn, mourning is not negative, being negative, or being pessimistic.  But don't forget to pick yourself up, brush off the dust, and get to know your new normal.  Bitterness is negative and it is something that will vie for your affections often, but do not let this wear you down. Find scriptures or favorite quotes and place them around your home to encourage you and to remind you that you have a rare gift.  It may not be what you were expecting and anticipating but you will see the beauty in the chaos that is your new normal.

Normal is such a strange word.  Every single person has something that they have gone through or are gong through that is challenging, heart wrenching, and yet beautiful.  From pain can come the most glorious beauty (as a Christian I am often reminded of excruciating pain and torture that Christ suffered on the cross to bring the world the beauty of everlasting life.)  So when you see your friends children or your other children developing in the typical progression, try to remember that we are all individuals and that mourning is not negative.  However, when you do reach different milestones, which are different for every special needs child, from your child learning to swallow, to tracking objects with their eyes, or maybe their first words in sign or voice....regardless of the milestone those celebrations and appreciation for the progression will be so much more meaningful and lasting than those milestones which were expected.  When you expect something it is exciting to experience it, but when something comes that you never thought would, now that is a true marvel!  I will never forget the joy we had when our daughter learned to read.  We were told that she would never be able to accomplish this, but she did and it was magical.

I know that your child is small and you probably still have that connection that all new moms have with their babies.  It is as if you can just understand what it is that they need or when they need you.  While this is not a perfect brain to brain telepathy, it is something that I still experience with my 10 year old daughter even though this has long faded with my other children younger than her but no longer babies.  Even if you do not know what they need all the time, you are your child's best advocate and voice because you are equipped to handle whatever road bumps may come-even if you do not believe it, you are.

Along the same lines your heart will forever live outside of your body, for all of your children, but most especially for the children that need you the most.  No, I am not saying that you love one child more than the other.  However, you will experience such a storm of emotions each day.  Plus, every new challenge and new opportunity to defeat said challenge is yet another way that you solidify your connection with your special needs challenge.  Instead of wishing that your child would just be quiet for one minute (although I can't promise that this feeling won't come, especially if you have a house full of typical children that are particularly chatty lol) with this child you will cherish the noises that they make even if they are unable to say a single word, because some special needs parents are never able to hear their child utter a single word-let alone I love you.  A dear friend wanted me to add that you may not always cherish these sounds, she has a child who cannot speak but wails or yells throughout the day.  It is much like Dory in Nemo trying to speak whale :-)  This mama has to wear ear plugs, but she still loves to hear the noise because it means that they have an open airway and are expressing themselves.  She says that you can definitely tell when he is happy yelling and unhappy yelling even though he does not produce tears, and when he stops his type of song she knows that something is wrong.  You will learn to love the gestures of love that they show you and you will look for them, just like you would with a typical child, even though these actions will be different.  But you will feel it and you will know it when your child calms when you are near, or stops crying when you pick them up, or does whatever they are able to do to show you in their way that you are their number one!  Just be on the look out for all of the lovelies because those lovelies will get you through your hardest times.  From another friend, cherish their precious features and the things that they enjoy, because it is these pieces of their individuality that you will cling too when times get tough.

Being a special needs mom will also strengthen your relationships with your other children.  It is amazing to see your children rally around their special needs sibling.  Wether it is to love on them, protect and stand up for them, learn about their diagnosis, or see the beauty and uniqueness in others that they may never have learned how to do.  I am very blessed with a 12 year old who actively seeks out friendships with kids in his school who are special needs.  He has made it a point to defend those who are teased and to reach out to the lonely kid.  Despite his sweet character I do not think that he would have tried to do this so earnestly unless he saw all that he has seen in caring for his sister.

Along this journey you will see the best in humanity and some of the worst.  You will be encouraged and heart broken.  You will see adults that act like children, and children who act better than any adult you have ever met.  You will hear standard compliments that are often back handed compliments even though I do not believe that people mean them as such.  You will have people who don't know what to say.  And you will have the people who say way too much.  One of the reasons I did not approach you today (although there were many reasons) is because I can sometimes say too much.  I didn't want to be in your face, inviting you to a support group, and giving you my information when you already had so much to process.  Sometimes, having other mothers reach out to you is overwhelming.  But it is going to be one of the very best blessings along this journey.  Getting plugged in with other parents, wether it be in person or on a Facebook group that was created for your child's diagnosis or for children with rare disorders in which there are now diagnoses.  Having that group to be involved in a little or a lot is always helpful.  Moreover, being able to help others in a time when you feel like you need more help than you can give, will actually bless you tremendously.  When I visit friends in the hospital with their children, I always say it is a selfish thing for me to do and I firmly believe for me that it is.  Because I do it for two reasons.  One is because I love them and two is because I do not want them to feel the loneliness that I have felt.  Even if I know that their family is here and that they have had an abundance of visitors, I still try to visit.  That is because over the past six years I can count on one hand the number of visitors that have come to see us during our many hospital stays.  It has actually gotten to the point that I do not share when we are in the hospital because I do not want to hope for company and just be lonely again.  And just in case you are on the loneliness end.  Just remember that God is always with you and that your child needs you more than you need visitors.  Sorry for the side track...back to online groups, one group I belong to has people that post every single day.  I on the other hand will post in reply to others and then I generally post when things are at the extremes of fabulous to needing prayer.  But without those groups, I would not have met some of the most amazing mothers on the planet.  I would not have learned some tried and true techniques for dealing with all sorts of issues that may crop up, and I would not have the encouragement of families across the globe that can empathize and truly understand what this life is like.

While it is true that you will loose friends who are unable to handle or understand the challenges you may face.  You will be blessed by knowing who your true friends really are and who you can reach out to-to bless and be blessed by.  This is a very valuable lesson and a very painful one.  But I would rather know who is for me so that I do not waste my very little extra energy on those who are against me.  The more difficult thing is when your child wants/needs friends.  Some special needs children are cognitively aware enough to know that they are lacking in the friend department.  And while they are medically fragile and you are constantly combating germs I urge you to include your children in programs that are either designed for special needs or not if or whenever possible.  For instance our daughter loves girl scouts and while we have not been able to go for literally two years, she still loves it and cannot wait to go back.  Many organizations such as the Girl Scouts will welcome your child with open arms and the children are much kinder than you would think.  I will say that it is harder though as they get older and the children are on age level when yours is developmentally many years younger.  But if you are open and discuss with the troop or group of children what is going on with your special needs daughter you will see the love and acceptance from children who are also learning a valuable lesson in life, to love without expectations.  

Dealing with people online has not been as welcoming as dealing with people in person.  People can be very brave behind a keyboard.  However, if you do choose to share your story publicly, you will see that there is plenty of good that comes from the bad.  You will have many "rubber neckers" as Brendan and I like to say.  They are the people who are just there to see "what happens next."  You will get the people who are the worst and down right hateful.  Use that block button freely!  I just want you to know that this is a risk and you would be surprised at what people say online or to your face, but especially online.  The best part of sharing our story online is not that we are raising awareness, that is a close second.  But for us it is because we have a prayer army at our fingertips, full of genuine people who love our child and our family and pray for us and with us- from all over the world!  That is powerful!  And as I said before you will be raising awareness and helping people to see that special needs children are valuable people too!  I may end up writing another blog about the boundaries we set up in choosing what we share and what we do not.  But for now I want to keep things as simple as possible.

One of the things that I have done very-very wrong for the past 10 years, has been to care for everyone else and neglect myself.  I put off my own doctors appointments.  I eat when I get a chance instead of purposefully eating regular meals throughout the day.  I eat leftovers and even though I am a health conscious cook for my family, leftovers are usually the least healthy bits of the previous meals.  Therefore I am not making sure that I get my protein, vegetable, and fruit intake like I should.  I also do not set aside the time to exercise daily like I should.  Instead I fit it in here and there at different times throughout the week which is the worst possible way to form a routine or habit.  And now that I just typed the word "routine" I laugh.  It feels pretty impossible to make a routine and stick to it when seizures, who come and go as they please with no rhyme or reason, dictate your life.  However, I am both a creature of habit and a person who thrives on order and routines.  And so for me, I have purposed this year to take my health more seriously by taking care of myself and at least setting daily, weekly, monthly, and yearly goals and then organizing them with desired deadlines.  Or at the very least some sort of configuration for the daily and weekly goals.  And while it is already February and I am still trying to feel my way through this, the part of me that is being purposeful about this is already feeling healthier and more stable despite not having anything "written out" quite yet.

As my poor brother will tell you, there are times that a word can cause me to snap.  Unfortunately, my brother was shocked by my reaction when he said something that I completely misunderstood.  It was not mean or hurtful but a truth in a situation.  The word that was said is one of the triggers that seem to carry me away from the location that my body is in and back into the diagnosis room.  The room when all of my hopes for this being something that she will outgrow flew right out of the window.  And while that day will forever be marked D-Day in my mind, I would not be the person that I am today had I not been given this amazing child.  Who is the strongest, bravest, most positive person that I know.  She gets knocked down, literally, every day.  But still she comes back and fights to be able to do what her brothers and sisters are doing, what she is interested in, what she wants to accomplish, and what her therapists/doctors/parents want her to accomplish.  She works hardest for those that she loves, and she loves BIG.  Because when she smiles, as Louis Armstrong would say, the "whole world smiles with [her]."  She is a gem and she has taught me more about life than any class in my younger years or that I ever took in my behavioral sciences degree program.

No matter how long you have been doing this, you can never know what will happen next.  Fight for the future, revel in the present, and learn from your past.  Nobody knows how long of a life you will have.  You could be gone tomorrow.  Unfortunately some medical conditions make us all the more aware of this.

I have been to more children's funerals and remembrance ceremonies than I ever thought possible, and I know that my number is just a drop in the bucket compared to some of the leaders of a rare children's support group that I am part of.  It just isn't fair and I really hate that this could be us someday.  In fact I refuse to think about it.  I pray that God would take everything away before he takes any of my family.  Even though I know that it doesn't work that way and that God is control of everything and everything that is His plan is perfect and better than my plans ever if I do not understand it and do not want to endure it.  We share information about Avagrace and her condition, within the parameters that we have set.  We participate in several epilepsy organizations.  And we homeschool Avagrace.  I participate in a support group that means the world to me even though I have not been able to go in quite some time.  They probably think that all I ever do is talk because by the time I get there I am like a volcano ready to erupt because I know that whatever I say stays within the group and they actually understand what this life is like.

I have known one child that an entire state seems to know.  Because of her diagnosis her mom was prompted to change the state practices for the good, start a support group, and reach out in so many more ways that I could list on this blog.  She has shared what it is like to bring your daughter home on Hospice and watch her slip away to heaven in her parents arms.  This mom is amazing and has become a face for special needs families.

I have known a wee one that lived for a little more than an hour and her life was no less valuable than any other.  She reached thousands of people from across the globe in that hour, she was also able to donate organs to save lives and aid in research.  Her parents and siblings continue to share the love that they have for her while raising awareness.

I also know of a very sweet family who is very private.  Their family and close friends know about their sons rare diagnosis as does their church and their sons school.  They do not participate in fundraising or put their sons story online or in writing.  They are active within their diagnosis foundation, meaning they donate to help find a cure and they go to medical conferences, but they do not allow their son to be named on the foundations website or registry.  Their son goes to public school.  They have had a tremendous impact on the ones close to them.

Impacting someone is what is important and what will change the world and help you to take this challenge and make it a force for good, the number of people you share with is not important.

Sometimes raising awareness, and reaching out to other parents like ourselves (meaning other parents of special needs kiddos), is all that we can do to make this life a little brighter.  Additionally, the more people that learn about special needs and medically rare children, the more research can be done to make their lives a little bit brighter.  But it also can speak volumes to people on how to love others and how something as small as a frozen dinner, or a little help with laundry, can literally change the lives of families like ours.  Even if it is just a one time thing, that gesture can renew our spirits so much that we are holding on to the excitement of that love for weeks, just like a kid with a new Christmas toy.  If you have a church or a family or a friend that offers to help (I am speaking to myself here too, because I am terrible at this sometimes) please allow them to help!  It is a blessing to both parties.

So to the lady leaving the doctors office.  I do not know you or your precious child.  But what I do know is that your child is wonderfully made and made in HIS image.  She was not a mistake air a mishap.  She was chosen and you were chosen for her.  What I hope that the doctors told you in the diagnosis room is all of this.  And I really hope that people/doctors/nurses/therapists/friends continue to tell you when you share with them about your child is that your child is a blessing.  Your child is special, 'she' is unique, and 'she' will make you appreciate each and every day more than you ever thought possible.  You have hit the lottery, the jack pot, and while it will be challenging-nothing worth anything is ever easy.  Even typical children bring challenges (especially 12 year olds who are wise beyond their years lol-jk).  But it is all relative.  Relative to your wisdom, knowledge, abilities, and circumstances.  You are on a different road and should not compare yourself to others, although it is hard not to.  You will learn to appreciate the little things and realize that life is about the little things.  You will be stronger and able to handle set backs without a second thought or glance and you will be able to see the positive in situations where others only see darkness.  You will rejoice and appreciate each accomplishment that your child makes and you will be more purposeful in looking for the positive.  These are just a few things that I have learned and that I wish someone would have told me in the very beginning.  So that when I got the diagnosis I would have found ways to be more positive instead of laying in bed at night and just crying and thinking of the worst.  I never imagined that I would get to my daughters 11th birthday that is coming up in June.  In fact, this time last year I was told that she would have been gone by now.  But nobody knows that information, aside from our creator, and the good thing is that I will continue to learn and see true and tangible miracles as will you!  As I said before it is all relative, so one lesson for me may not be as valuable to you.  But I hope that this helps in one small way.  You can do this and not just because you have to, but because you are fully capable of moving mountains, just believe in yourself and your abilities as a mom.

I do hope that I see you and your adorable daughter again.  Next time maybe I will have the courage to say Hi!  And next time, I hope that you have found a rhythm to your life that helps you to smile more and cry less.  I will be praying!


Monday, February 23, 2015

Younique FUNDRAISER! And Giveaway!

We are having a YOUNIQUE fundraiser!! If you want to try this amazing natural lash product that is safer for your eyes than the high end brands that it competes with, then now is the perfect time. If you already use Younique and want to try new products, now is the time smile emoticon If you are able please check it out and share the link. Every purchase is going to be in the running for a drawing for a free eyeliner!! If you share the link, you will be entered twice smile emoticon If you sign up to sell Younique during the event then our family gets a bonus towards the total fundraiser amount.  The same is true if you sign up to host your own virtual party where you can earn free Younique products!  Here is the party link, watch the below video for more info and why this is the safest fiber mascara out there, in my opinion!  (…/1425548/view

Here is the link for the info about Nylon and it's dangers to our eyes­iles/national/documents/fact_sheets/FS15­_CosmeticsSafety_0.pdf

Thank you for all of your support!  

Friday, February 20, 2015

International Pen Pal/Box Swap*Bringing the Beauty of Our Worlds Cultures To Avacake

Hello friends!  I am so excited to write this post and I really hope that it brings with it some success!  Today Avagrace and I had very limited schooling but the schooling that we did do inspired something that I think is going to be amazing.  You see she had a very difficult day with seizures and some other health concerns that I will talk about at another time.  It is still a bit much to take in but after consulting with her "team" of doctors both here and in Texas who were all speaking and emailing one another which is why I call them a team, they truly are phenomenal and the biggest blessing that we have being in Oklahoma, we finally were able to hammer out a plan and a back up plan that everyone was comfortable with.  These plans were being discussed from 10am until literally 8:30pm, well after office hours.  Our doctors are true gems!  But enough of that, this is a fun, light, airy blog today :-) and I hope that my excitement spreads!

So in between seizures and sleep I decided that I would make the most of the awake time that I had with Avagrace today by accomplishing some school but making it fun.  This is always my goal but some subjects are much easier for me to make fun than others. (cough math cough....).  Sociology and Cultural Studies, now that is GOLD for mama to dive in to and spend great lengths of time teaching.  My kids have always loved to learn about children in other countries.  We had a series of DVDs before the fire that featured a country and then several different children from across the county would tell us what a typical day was like in their life and location.  My kids loved them and so did I.  I cannot remember for the life of me who made those DVD's or where I got them, but they were treasured!  Can you guess what the first country was that I purchased?  If you can leave a comment.  I will tell you at the end of the post so no cheating/peeking :-)

Today we talked a lot about Japan.  At one point we had orders to move to Japan and we were so ecstatic!  But at the last minute the plug was pulled and we were told that we could not move because of the seizures.  It was obviously a total God thing that they cancelled our orders because just a few short months after we would have moved is when Avagrace's conditions went from being something that we could live with, with very little intervention-to her being in the hospital for months not knowing if she was going to come back home.

Anyway, I have been learning more and more about some of the Asian countries on my own (all sparked from my interest in their amazing beauty products!) and so I thought it would be fun to share with her some of the things that I have been learning. Then we could look up on my computer what kids are in to and how their school system works etc.  After watching a few videos on YouTube we were hooked.  Avagrace was so excited.  She fell in love with their current squishy fad.  If you follow her Facebook page then you may remember her bag that she carried with her to every appointment.  In it there was a heart shaped stress ball "squishy" that she used when getting blood work or going through tests that she wasn't fond of.  She also used it for therapy purposes after certain types of seizures.  When she saw that there are a plethora of squishy's including but not limited to cupcakes and characters she was so excited.  On top of that some of her very favorite movies are made by Studio Ghibli and Disney (like her very favorite Ponyo).

Then she saw some kids sharing their favorite candies and foods and if you know Avagrace you know that she not only loves to eat food, watch cooking shows, but she also loves to cook.  Before the fire we had so many different types of "Baby Cakes" type machines that were safer for her to use to cook than a stove top that she could fall on if she started to seize.  Even my super mom reflexes are not enough to make me comfortable enough to allow her to cook on a gas stove.  When we move back home and have the electric stove we will start cooking together again, but with an open flame I didn't want to risk anything.

So Avagrace said to me that she wanted to try candy's, treats, and good for you snacks from "all of the countries."  She then added, wouldn't it be so much fun to get a box with those things and some small toys and sometimes "fashion" from "all of the countries?"  Her whole face just lit up when she was telling me her idea.  She immediately thought of Breya and how much she loves Paris and all things fashion.  "Maybe Breya could get a shirt or dress from Paris...or something with Paris words on it."  :-)   We looked up a few sites that offer international subscription boxes.  And we found some sites that sell things like the "squishies."  But the more I looked the more I thought about her idea.  She really wanted to have an experience and a connection.  And all of the options that I was finding were just...what is the word...generic?  UnAuthentic?  Disingenuous?  They seemed to be lacking the heart and soul of the childhood experience just as much as the authenticity of choices made by locals.

SO, here is my hope.  (If you don't have kids I have an option for you too if you want to participate) My hope is that we can meet some friends from across the globe that want to participate in a box swap.  We will set up the specifics together but basically we will be sending a box of our favorite "All-American" treats, from edibles to play things, stickers and bobbles and if you have anything you want we can arrange that too (within reason of course).  Even if you have a "taste" that is unusual/acquired or a "dare you to eat this" thing like America's current obsession with bacon everything.  The point is to make it fun, educational, and personal.  So the MOST IMPORTANT PART is to include a single post card or a picture or two of the places in your area or even famous landmarks (they do not have to be famous it can simply be a picture of a park, the front of your school, a little shop, your favorite restaurant, the sky is the limit...well maybe not the sky (unless it is the Northern Lights or something unique like that lol).  Then write a little note about the post cards or your day or what your have included.  Just to make it personal.

Edited to say this..."I just went back to check on Avagrace and on her bed table she has a "life list" that we started when she was placed on Hospice care last year.  It has only a handful of items on it as she is not a child to ask for things.  Even when it is time for her birthday we have to pry out of her what she would like, several of my children are like this but she is definitely the child who is the least me-focused.  Anyway, on her little list of dreams that I fervently want to help her accomplish as soon as possible, she added "boxes shareing with new friends in all of the countrees" except there wasn't an "o" in countries but it looked to vulgar to write and I didn't want to get flagged lol.  and now back to your regularly written blog post....

We will then FILM our unboxing and if you want we can do a second filming of the tasting of certain treats.  We will share them on our YouTube channel and we will only say your name if you tell us too.  It would be great to see you or your kids unboxing your United States/Oklahoma edition boxes from us too but you do not need to feel obligated to do that.  This is meant to be fun and pressure free.

I have several military friends that are stationed overseas and I can only imagine the things that you miss.  Hint Hint Hint :-)

So what if you are reading this and do not have kids but are just as excited as I am?  You are MORE THAN WELCOME to participate too!!  Everyone has had a childhood and everyone still has a different degree of being a kid at heart.  You can either participate by box swapping or by preparing a box and we will pay for it (of course the goal is to be as thrifty as possible as we are on a tight budget, but all of this will be sorted out before hand).

So what do you say?  Who wants to participate in a International Box Swap?  Please send me a message on our Facebook page and we can get this party started!!  :-)

Also, the first country was my beloved Finland!  Have I mentioned that I had the fantastic blessing of being an exchange student when I was in High School, thanks to my amazing single mother?  I was able to live with one of the sweetest families ever and meet some of the greatest people that I have ever known.  I learned about a country that I think the world would gain much by adopting some of their practices and I dream of the day that I will be able to take my family there for an extended amount of time.  I still keep in touch with my friends in Finland thanks to Facebook and if I could be a dual citizen I would in a heart beat!    *One interesting fact, you may know that Nokia is from Finland but did you know that Finland is the country that the EmFit monitor was invented?  That is the monitor that is on Avagrace's bed that alerts us of seizures!  See, Finland is Awesome in countless ways!

"I Can't Find A Home Church, Do I Really Need One?" Part 3 & 4 Why Church is Vital & Do Not Be Discouraged!

So I promised you yesterday that I would tell you the story of "How I became a Christian aka my first time at church as an adult."  I was 19 years old and pregnant with my first Child.  I was a single mother and I was pagan.  I was raised in a home where we went to a Lutheran church religiously when we were younger.  My mom worked there during the week as they had a day care center in the building.  My grandparents went every Sunday religiously and my grandmother would go early enough that she would get the same pew every single week.  We lived quite a ways away from the church so we didn't go every Sunday but until I was in 6th grade we went regularly and participated in choir.  However, we never felt welcomed there.  We would sign up to volunteer in certain areas and even though we were never called to help, we would continually hear from the pulpit that volunteers were needed.  It was also the place where the bullies from my school went and instead of being nicer at church, they were so much worse during choir and Sunday School.  But I always wanted to be closer to God.  I would attempt to read the Bible in early elementary school when I had no idea what it was saying or what it meant.  I would pray that my mom would send me to private school so that I could wear the "religious uniform" and "be around genuine Christians."  I always wanted to be good. When my parents got a divorce and my sister and I became teens we were more distant from the church and would only go on Holidays or occasions where our grandparents would ask us to attend.  Admittedly, the youth group, although filled with kid who made it a point to make me feel unwelcome or ridiculous, was run by the pastor whom always showed love.  He would make big pancake and egg breakfasts for the youth group sometimes before school.  When he ran the breakfast I would walk to youth group then but after a few times of attending only the breakfast, I stopped attending all together.  It just didn't feel right to be part of something halfway.

From the time I was very small I was also interested in witches and magic, nature, animals, and a deep desire to protect them and our planet.  So in High school when I met some students from two different schools that were pagan I was intrigued.  Around this time I also had developed a genuine love for philosophy.  The more I read, the more I felt like I had finally belonged somewhere.  This religion was proclaiming itself as an anti-religion (practice based on tradition or obligation) and it was all about "if it harm none, do as you will"  furthermore, it was gentle and kind to animals and our planet.

When I became pregnant I was in the army and was the only chaplains assistant to ever proclaim my religion as "wiccan."  Yet the chaplain that I worked under was Baptist.  One day we sat down and talked about why I was wiccan and what I loved about it, if there was anything that I didn't like, and if I knew anything about Baptists.  He never tried to convert me and he welcomed my input during prayer meetings and other chaplain led events.  He even let me lead a non-denominational worship group.  It was very encouraging.  Too soon my time in the service was over as September 11 had just occurred and by being a single mom I was looking at either leaving my newborn to fight overseas or accept an honorable discharge so that I did not have to leave him.  I had always wanted to be a mom and was told that I would never conceive, so I choose to stay with my miracle baby.  I moved out of my moms house and into my own apartment and started teaching special needs students in a all-inclusive preschool.  A church in my area was offering a sign language class for free and so I jumped at the chance so that I could better teach my students.

Ironically, the church that hosted this event was a church that my dad took me to for a short time after my parents divorce.  This church actually had a daddy daughter dance when I was in sixth grade.  My dad had purchased this knee length prom-type dress for me to wear.  It was forest green, my favorite color at the time, and it was the most thoughtful present he ever purchased for me.  But I was so embarrassed because I was way over dressed for this small-church occasion.  Yet every single one of the girls at the party were gracious and kind and complemented me even though we both knew that it was more than a bit much.  I was blown away with how sweet everyone was.  We went to the church for a few weeks and then, my dad fell away again.  He was a smoker and someone felt comfortable enough to encourage him to quit smoking, that was the last time we attended.

Being back at the church felt so nostalgic and sweet.  I remembered all of the programs that they had for kids and how all of the kids seemed to not only love being there but genuinely wanted to love the Lord and the world the way that the Lord would want them to do.  Remembering this made me realize that I didn't want to force my child into one religion, that I wanted him to experience other churches so that he could choose what to believe.  (In my years of searching I had been to a Jewish ceremony, Catholic, Lutheran, Methodist, Orthodox, American Baptist, AME/African Methodist Episcopalian, Episcopalian, and Wiccan "churches" with friends).  So after a few Sundays I worked up enough courage to visit this church that had such great children's programs so that I could give my child the chance to form his own opinion on religion.

I sat in the very last pew, without a Bible, mouthed the words to the songs that were catchy but that I had never heard, and then listened as a new pastor was giving his first sermon to the church.  He was going to be voted on to see if he was the new pastor of the church or not.  But all I knew at the time was that he was a guest preacher and he was speaking of truths that I had never heard a Christian own before.  He spoke of three chairs and how Christan's fit one of three chairs.  I am probably going to butcher this (it was twelve years ago) so I am only going to give you the gist and hopefully get the "chairs" right.  Basically the first chair is for the Christians that show up on holidays and special occasions, that have a Bible or maybe don't, but if they do it just sits in its spot and looks nice.  The second chair is for the people who go to church on Sundays, follow along with their Bibles, go to Sunday school and learn the stories.  They listen and participate in service but after that they are done with their obligation.  The third chair is for those who actively want to know God.  They come to church eager to learn, they volunteer for things, they read their Bibles throughout the week and meditate on the lessons from the weekend prior.  They try to show Christ's love to others in the work place and in their daily actions.  They are on fire for the Lord.  The second chair is luke-warm Christians, and the first chair are people who do not have a relationship with Christ.

I was blown away.  He was admitting to all of the hypocrisy that I grew up hating about Christians.  He was talking about everything that pushed me away from God.  And he pointed it back to me.  Was I willing to let what others did/do dictate what I was going to choose for my life.  After hearing him speak I was never the same.  But it wasn't just his words that moved me.  During the "greeting" when you are supposed to shake hands with those around you, it wasn't a race to see how many hands you could shake.  And it wasn't a "shake hands with my family/friends that I am sitting beside and talk about something so nobody in front of or behind me turns in my direction and expects me to extend a hand."  People were actually walking around, shaking hands with familiar faces and stopping to talk briefly before moving on to another.  I had several people shake my hand and welcome me to the church.  You could tell that they genuinely wanted to welcome me.  Then something even more special occurred.  At the end of service as everyone was leaving I had to go up and introduce myself to the pastor.  You see, even though I went on my own desire.  I was a part of the crisis pregnancy center in our town and if you choose to go to church and have the pastor sign your church program you could earn extra points for things that you needed for your baby.  So I figured that I was there for my child anyway, why not be brave enough to say "I need your autograph because I go to the crisis pregnancy center."  It was almost as hard as talking about it on this blog since I have never shared my first pregnancy details publicly.  So when people were leaving the church there was this one girl, I will call her "A" because if she reads this I want her to know how important she is to my story, and her name starts with A.  (I am so original aren't I?)  "A" bolts down the aisle just short of jogging with her hand extending in front of her three pews in front of me and says "HI, I am "A" I am so glad that you could come today, is this your first time here?"  She then tells me all about the Sunday School class for people are age, she asks me to come back next week, and offers her phone number so that I can call her if I need anything.  I was floored.  I had a bigger reception here than my family ever did in the YEARS I had attended the church I went to as a child.  After speaking with her I was very fortunate that there was also a volunteer from the Crisis pregnancy center attending so she walked up with me to talk to the pastor.

After attending for a few months I was put on bed rest due to pre-term labor.  I had ladies bring over books form the church library and other things to keep me occupied while I was resting.  I had people bring meals and keep me company.  And the day that my son was born I had so many visitors that from the moment he was born (there were people in the waiting room) until visiting hours were per that day, I never once had an empty room.  They were there to celebrate his life but to show me that they were going to love on me and my son, we were not alone.  That pastor became and is still the head pastor of that church.  He baptized me when I was 9months pregnant, he dedicated my son, my mom started coming to church and he baptized her too!, he married Brendan and I, dedicated Avagrace, and baptized my sister and brother in law.  Together we witnessed miracles happen in the first years of me becoming a Christian.  I looked forward to being at church every Sunday, Wednesday Night, and many other times throughout the week.  I volunteered in everything from teaching Sunday School to cleaning the Church.  I went to Sunday School and I was part of a women's Bible Study that took place at "A's" house on a different night of the week.  I truly had a "home" at that church.

So that is my story and my ode to what it is to belong to a church.  Without the surrounding of loving, genuine, real people who mess up but seek to continue on Loving God and serving others, than I would not be who I am today.


At some point in your search for a home church you may become discouraged, perhaps even very discouraged.  You may even want to quit and just do worship at home with just your family.  And that may be ok for a while, but without the presence of other believers in your life it is much easier to fall away, be discouraged and lonely, and stagnate in your process of growing in your faith.  It is much like when you plant a garden of vegetables.  If you plant just one vegetable by its lonesome it is more susceptible to being a critters dinner, or to be trampled.  But if you plant a garden with many vegetables, critters still may come but they are much less likely to be trampled.  You will still be hit with temptations, sin, and the feelings of loneliness and discouragement.  But when you are plugged in to a body of believers who become your church family, you are less likely to fall away and more able to handle the challenges that you will face because you have others to surround you and help you through those challenges.  Here are a few scriptures that I read when I am feeling especially discouraged in my search for a church FAMILY.  (Also, if you read 1 Corinthians 11:17-22, you will see that it speaks of believers coming together and while it is a rebuke against the negative attributes that can be given to a church, it is showing us that being a church family who is unified and comes together to care for each other IS THE GOAL!

Hebrews 10:25 English Standard Version 

Not neglecting to meet together, as is the habit of some, but encouraging one another...

So yes, a church is really needed.  That can come in many forms.  It can be a bricks and mortar type building with a sanctuary and pews.  It can be a rented hotel conference room with a group of like minded individuals that want to worship together and also invite others to attend, it can be a home church with families meeting in each others homes.  But the purpose of church is to worship, study, follow God's will, and uphold each other in the ways of the Lord.  

Obviously, church will look different to everyone but it is important.  So don't give up.  Continue in prayer and deed with the purpose of finding a body of believers that you can come together with for the purposes listed above.