Monday, October 29, 2012

Artist Trading Cards

All I can say is: Why didn't I think of this?  I came across a Catholic homeschooling blog Pondered In My Heart  while searching for other Catholic homeschoolers since I don't know any in our area. I figured I'd turn to the internet to find others with similar interests. I scoured through the blogger's posts with real interest and saw  Many things I found she did I wished I had time to do ,which I don't because life is over scheduled for me right now.  I oohed and ahhed over many of her creations and the fact her children were so artistic. I marveled at the fact that she too has a younger child with special needs just like I do,  and was able to make her homeschooling work.  I loved the photos of just the simple things they do in life together as a family.

(Not ours but some beautiful ones from Pondered in my Heart website.)

After all that oohing and ahhhing I found a post about an art activity they did called Artist Trading Cards. After looking at the photos and reading about it, I knew that my daughters would love to do something like this because they have such a love for art and drawing. The concept is so simple and yet so enjoyable to do.
This requires paper, art medium, and your love for drawing.
So this morning I shared the idea with my girls ,and in true form they got right to work practicing and warming up their artist skills.
Hannah, Marilyn, Maggie and Katie working very hard on their practice Artist Trading Cards. They were using the book A Year with God (sadly out of print) from Catholic Heritage Curriculum, to practice drawing a picture of Mary and the Christ Child. 

Sorry about  the fuzzy looking picture. It was Marilyn's beginning sketch of the Blessed Mother and her child.

Which was  shown how to do step by step  in our A Year with God book. 

And this was the end result of our little experiment, and it turned out great. It was so neat to see my little  artists' perspectives of Our Lady and baby Jesus. I know the girls really enjoyed seeing each of their pictures side by side after they were done.
Who's pictures are who's?  Starting from left to right , Maggie(6), Hannah(9), Marilyn(14) and Katie(12).

So now that we've practiced a little bit. The girls are ready to draw and trade with others.
If anyone is interesting in creating their own Artist Trading Cards and trading with us. The theme is Saint  ATC's. Since All Saints Day is coming very soon.
Here are the rules ( that I graciously copied from Pondered in My Heart):

1. Each participant will create cards that are 2.5" x3.5" ( 6.35 x8.89 cm ) in length.  . You can buy ready made cards, cut out your own on heavy paper such as cardstock or watercolor paper . It is said that a 9x12 sheet of paper will give you ten cards.

2.You may use any art medium that your heart desires.. whether its pencil, pen , water color, colored pencils , graphite, acrylic, marker or ink. Whatever you prefer to use.

3. The swap is open to all ages from the very young to the very experienced. LOL

4. Each participant will create 5 ATC's to mail out, and that person will receive 5 different cards in return.

5. Cards will be addressed to me and I will sort out cards to each child by age group/ability  of the creator .And we'll mail out our cards to the new recipients. When you mail out your cards please include a self addressed  stamped envelope and we'll send our cards out to you.

6. International swappers are welcome.

7. Is open to to all ages.

8. Each card should be labeled on the back with the creator's name,and how ever much info you'd like to share ( age of child, or adult, date, title of piece , media used,and location if you wish). Some participants like to participate as pen pals and can include more personal info but its not required.

9. If your interested in participating with us please email me at : reedfamily( at) yahoo (dot) com. And put ATC Card Swap in  your subject line. We'll send you more info and the more who participate the better.

10. Please mail your cards post marked by November 19,2012 ( one more week extension , by November 26th).

I'd like to thank Pondered in my Heart for sharing this really neat activity and giving us something to do this winter. It also gives us a reason to add more art into our homeschool days , as it was always taking a back seat to our other subjects. I know the girls will enjoy starting out their day with art and even better, art to give to others.

And if you need some inspiration check out the the post Pondered In My Heart  has of all the ATC's they collected when they did their ATC swap.

We're looking forward to having others participate with us and we can't wait to see all the art work that comes to us and we're looking forward to sharing ours with others, too.

Sunday, October 28, 2012

St. Marianne Cope and fun craft

This Sunday for my Religious Education class I decided to teach more about the Saints. With All Saints Day coming around the corner (Nov 1) and the fact I've learned two things about my class:  That, one, none of my K/1st grader children ( except my 6 yr old daughter) in our Religious Education class has ever even heard of Saints, and two, nor ever heard their stories. I began to incorporate stories of the Saints just for this very reason. I will admit its a bit of a challenge since I have very limited time to teach them stories from the Bible and catechesis all at the same time , adding in the stories of the Saints to me is just as important.

I know our religious ed director has started a Kids Club for the kids each week on Thursdays and has been teaching about the Saints. Sadly though , only the kids from the school, have been benefiting from this even though its open to the community( we are the only ones that do not have children in the private school and do attend).  Parents outside the private school are NOT taking advantage of the the Kid's Club and it makes my job all the much harder because the children could be learning about the Saints from the the Kids Club rather then me having to cram more into my lesson plans when we are only there for about an hour and twenty minutes ( give or take).

 I find it just as important for my class of K and 1st graders  to learn about the Saints as it is for me to teach my own children about them. Whether your Catholic or Protestant, we all have holy people in our faith that our children should be learning about. These people lived , died, and gave up their lives for God. These people where men, women and even children who wanted to live the way God wanted them to live. They lived pure, holy, and for Him. Many weren't perfect , some started out life not living for God at all, only to find later on in life that God had other plans for them, and others started out life holy and continued to live for God until their last breaths. They lived, taught, ministered, and even were martyred in the name of Jesus Christ.  So why are we as parents lacking in teaching our children about the Saints, and more importantly, why are we lacking on passing down our faith to our children and not teaching them the real reason for Halloween?  Just as Christmas has a real reason for the season (which isn't Christmas trees and presents) there's a real reason for Halloween too( honoring those that have died and have gone on to Heaven), that many miss, and dismiss as a pagan, commercialized holiday.

Last week I had taught the kids about Saint Kateri Tekakwitha. We had a lot of fun reading, talking and even making an Indian head dress and Holy Card about her.  They also learned more about her at Kids Club so that was a good thing too because it solidified the lessons we had her at home and Maggie was able to remember her when I asked today if anyone remembered the name of the Saint from last week.
This week was St. Marianne Cope. She too was cannonized last Sunday along with St. Kateri.
We read  a story that I printed off of a website called Strange name I know. But it has free printables on the website and had the story of St. Marianne Cope that I was able to download and print. After we read St. Marianne's story and discussed the fact she was a sister (nun) , something not commonly seen here in our area, and that she took care of lepers ( not leopards..ha, ha). We learned that she did such an amazing thing by caring for sick people that no one wanted to take care of. St. Marianne lived for quite some time and it wasn't leprosy that killed her , actually neither she nor her group of sisters ever contracted the disease ,but she passed away from a heart attack.  Her story of going where God called her to be without question was very inspiring.

We always follow up our lesson with some type of coloring page or craft in our class. This helps to be a visual aid of what the kids are learning. Not to mention, kids love crafts. I've yet to really meet a child that doesn't have a crafty side to them.
Our craft idea I borrowed from Catholic Icing, and it turned out to be a great hit. The kids really loved the puppets we made of St. Marianne. I believe right now on the Catholic Icing website you can get a free ebook on how to make different types of puppets. Though for some reason I haven't gotten the ebook yet in my email. I can't wait to get it so that we can make other puppets too.  This particular craft I looked at online and eyeballed it, and it turned out really super cute. In fact another teacher noticed them and just though they were so cute. I'd have to agree, they sure where.

This one I created first. I always make a craft first so I can see what supplies are needed, what to cut, how much to cut, and if there is anything I need to take into consideration when having to do it with a group of kids versus with just my own girls.
This craft was easy to put together, even with 8 children with varying degrees of abilities. Though we had one that needed some extra attention we were able to make this and they did turn out great.
I learned to keep the beaded rosary on, we needed to use our hot glue gun. Not something I allowed the kids to use. But I had them bead their rosaries and each child stood in line as I glued them on to their St. Marianne puppet.   Then used a white crayon to write her name, though most of them can't read it , they can see it ,and maybe just maybe, their parents will see the name and look her up on their own and learn a little about her as well.

Here was Maggie's finished St. Marianne. She sure did a great job, and I'm not sure how her name came out backwards in our picture. Ha, ha.
Even though I believe the craft is directed for preschoolers, even kindergardeners and 1st graders have tons of fun making their own puppets so they can recreate the story of St. Marianne.

Next week I won't be teaching Religious Ed as we'll be heading out to Cincinnati, Ohio for more doctors appointments with Maggie, but be rest assured I'll be working on my next set of lesson plans.

I plan on talking more about sisters and seeing what I can find for my K/1st grade class that will help them understand that, yes, there are priests, but that there are sisters out there who help do the work of God as well.  If anyone has any suggestions please take a moment and post them in the comments. This is the first year I've taught younger ones so I've had to revamp what I do and what I use to teach.

Wednesday, October 24, 2012

Getting Ready for All Saints Day

I honestly can't believe how fast October is flying by us, and how quickly November will be here.
With us preparing for another trip to Cincinnati with our youngest child we wanted to celebrate a little bit this week All Saints Day because we will not be here when our parish has their Saint's Day party.  We leave on October 31st and won't be back until November 6th. So we'll be gone for our annual Trick or Treating in our area ( which thankfully we are one of few areas that truly have fun with this time of the year before we get dumped on by an insane amount of snow) but we will be participating in the Trunk or Treat with a church that isn't to far from us before we leave.

This week I really wanted the girls to pick a Saint that they wanted to learn more about. More then what you just read in a book.
Katie was the first to chose the Saint she wanted to learn more about. This was Saint Maria Goretti.

 St.Maria Goretti was born in 1890 in extreme poverty. She was very young when she died at the age of 11 when her neighbor's son assaulted her for not giving in to his demands.  Young Maria was a very wise girl at the age of 11, as she had to take on the roll of being a parent to her brothers and sisters while her mother worked the fields. Maria's father had died when she was very young so she learned to keep the house and take care of her siblings. She also taught them at home, and she was taught at home by her mother and father too ( guess she was homeschooled , he , he ) and young Maria took the knowledge she had from their village priest and taught her brothers and sisters how to pray to our Heavenly Father.  Even though Maria was so young she was said to have a rich prayer life. More so than most adults have even to this day. The most beautiful part of Maria's life story was that even though she had been stabbed 14 times and managed to live long enough to get to the hospital to have surgery. Maria forgave her attacker and asked that he be in Paradise with her before she died.  Even those very words served well long after her death as her own mother was able to forgive the man who had killed her child and adopted him as a son of her own. Maria was made a Saint in 1950  after two miracles occurred after death. The day of her cannonization some 250,000 people attended and it was the first that a mother of a Saint attended their own child's ceremony.

Okay, now that I gave you a little recap of the story of Saint Maria Goretti and you may think to yourself. I want to learn more about this little Saint. I thought I would offer some ideas to help you along.

First, Katie read the story from the Stories of the Saints Vol. 1 from Catholic Heritage Curriculum.  We love these story books. They truly bring to life the stories of these Saints in a way that children can learn from and admire.  The stories are beautifully written and even my picky 14 yr old enjoys them as well.
Of course you can look up her story online, you can read it from another Saint book that you may have in your home.

Next, after Katie read the story, we decided to make a lapbook. This was a tricky undertaking since there really aren't very many Saint lapbooks out there at the moment to pull ideas off of , or to print out the little minibooks needed to create the lapbook that were free. So I jumped onto my trusty MsWord and created some of our own, and this is what we came up with:

We discussed about Maria's life, her death, where she lived. We talked about the corporal and spirtitual works of Mercy that Jesus had taught us when it comes to helping others who are less fortunate. We added a map of Italy and Katie labeled that , along with a prayer to Saint Maria and on the back was something I copied off of our A Year with God book ( which sadly is out of print but you can find on homeschool sale groups and sometimes ebay).  I hope that Katie learned a lot from making it. As I learned a lot myself putting this lapbook together for Katie.

I will also share the minibooks that I created as well of this lapbook. Just email me at so that I can send it to you. One day I will figure out how to get it up on the board here. Until then you'll have to email me for it.  Some of the minibooks  can be adapted for any Saint. So please feel free to use them ( not for profit) and if anyone comes up with any other great ideas to add to a Saint Lapbook. Please feel free to message me in the comments and I can add them .

Lastly, I had found a VERY good documentary on Youtube about Saint Maria Goretti. I HIGHLY recommend it. I watched it first to see the quality of the documentary, and its safe to say its safe for all ages to watch. It was very well put together and very well made that an entire family can watch it without the fear of words being used that parents aren't ready to explain to their young children about.
This is a 6 part documentary on the life of Saint Maria Goretti. The nice thing about this very one is that there are living people who knew her , interviews from her mother, and photos of people. I can honestly say when I watched it that it really help me to think of her as some one real and not so much of someone I heard about in a story.  I guess that's the beauty of video. It brings everything to life.  I definitely give this a 5 out of 5 stars for family watching.   Even if you are not Catholic I believe that you can absolutely take something away from this documentary. That there are youth in the world who want to live for God and not the things of this world, and there are youth out there who inspire to keep their purity until marriage, or to give it up to God.

With all of this said the other three are working on reading about a Saint of their choice , and to learn more about them, and I can't wait to share it here.
I would love to have others share : What are you doing for All Saints Day with your family?

Maybe next year I'll have time to actually make some Saint costumes, but for this year. I think learning about someone other than ourselves is definitely a good start.

Wednesday, October 10, 2012

Gallon Man

As you can all see even though we've been going through a lot with Maggie's medical care we've taken some time to have some super fun here at home. We really need to do it , to break away from the craziness of fighting insurance companies to get the care we need for Maggie.

So hence , gallon man.  Gallon man was super fun to make and it was fun to sing the song that goes along with Gallon man. Also so thankful for pinterest. It has become my very favorite place to go to get these fun ideas that I don't have think up all of the time. In the past, if we wanted fun, I had to sit and think super hard. Now I don't have to think so hard and its also interesting to see how many free resources there are out there in the super information highway.

I really think Gallon man is going to be helpful in teaching Hannah and Maggie ( heck even Marilyn and Katie ) how to remember how many pints, cups , and quarts there are in 1 gallon.

If you want to make Gallon man , you can jump on over to this link:

And go ahead and post your happy faces and link back here in the comments of the fun you had making Gallon Man.

Monday, October 1, 2012

Our Days

I'll have to admit after reading another blog of a special needs mom. I had the gumption to share with many others how our days are here at the Reed Family household. I'll admit I'm a little scared to break it down because some of it would make me proud and happy,, like those days when I'm super mom and can do more than the average family without a child with special needs, and some of it would make me down right sad.  Like the lack of human contact from people, surgeries , medical procedures, a marriage that's been for 17 years but hurts and is a work in progress.  With that said though, I'm going to break it down. It may even make me see where I'm doing a little to much too, and it may show those out there that if I can do this and have a child with complex medical needs, well, so can you.
So bear with me here. If you make it to the end you are a super mom too, or this just may exhaust you too.

I'll go ahead and start with Sunday since its the first day of the week.

Sunday we get up at 7:30 am to get ready for church. Mass doesn't start until 11am but there is plenty to do before it even starts. I get the girls up , encourage them to each have breakfast. Which is an actual chore to do since they hate eating in the morning. I'm not sure why , but they just aren't breakfast eaters. So I'm rushing along calling out names asking if they have had something in their stomachs. The worst offender?? Maggie. She thinks she can live off of Poptarts and gets mad when they are gone and not in the house. Even if they are I try hiding them most days because Poptart is NOT a food group.   After nagging everyone to eat, then I have the fun of getting everyone to get dressed. Most days I have them pick out what they are going to wear for church , but some days I forget , or most times they don't do it when I ask them to.
 To get Maggie dress this requires unhooking her from her drainage bag, capping her, getting her dressed and then hooking her up to a leg bag because I won't have time to take her to the bathroom while teaching Religious Ed class. Even if I instituted help , I wouldn't want Maggie distracting the other kids because if one 5 or 6 yr old has to go to the bathroom, so will the rest of the class, and I only do one bathroom break ( because its all we really need.)

 Once I've gotten this all accomplished I can manage myself into the shower, dry my hair , get my clothes on and grab Maggie's book bag that we carry all her medical supply stuff in  to teach a kindergarden/1st grade Religious Education class before Mass starts. We are out the door 5 minutes to 9  (thank goodness we live so close to the church) and I'm over at the school building at 9 am setting up my class.  Then at 9:15 I gather up the kids and teach my 8 students all about God and the Catholic faith in a way only k and 1st graders would understand. Not an easy undertaking for sure since we don't have much of a curriculum to work with except the workbooks they order for the kids. So I have the joy of putting together something that is going to get us from 9:15 to 10:45 am without me going  nuts.
After that is all finished I have to gather up my things , take them out the van and walk over to Mass that starts at 11 am.  Thankfully I can sit in the pew and breath a sigh of relief that we had another successful Religious Ed class and now I can stop and meditate and pray and focus on God for an hour.
After Mass is over , we sometimes take a ride in the van just for a Sunday ride, or sometimes go over to the grandparent's house, or we just go home and relax.  After we get home and relax a while before I know it its dinner time. It goes by fast because I catherize Maggie every 2 hours right now because of her noncompliant bladder.
After dinner, The two older girls go to their Religious Ed class since its in the evening.
 So its bath time, and for Maggie I have to sponge bathe her since she still has her supra pubic tube in. Sometimes I will let her jump in the shower, but I don't make to much of a habit out of since I really don't have the green light to do it from her doctor.  After bath, getting everyone in jammies and hair dried its time for Maggie's enema. We do her enemas through her Malone now so that makes it a little easier. But I still need to make her enema recipe , heat it up to body temp, and then get her hooked up for her enema. That is ran for 20 minutes and she sits another 45 afterwards. While I'm waiting for her to get done with that I give Maggie her medication , Ditropan for her bladder , and her prophlyactic that she's on to help keep away UTI's (evidently).   During that time I am sending the other girls off to bed.  Once Maggie's 45 minutes is over, then its time to to her gentemyicin flush for her Mitrofanoff that she has. This is to help keep her from getting UTI's. Whether that really helps , well that's subjective. That sits in her bladder for 30 minutes , and then I uncap her and hook her to drainage bag since she's already sleeping in bed.
After that's all said and done I am grading any papers or work that the girls did during last week that I didn't get to on Friday or Saturday and setting up their new calendars for the week so they know what their work is. By this time its about almost midnight. Sometimes I will jump into bed at night and read a book , or I'll  piddle on facebook and check up on families we know.

Well, if your not tired yet ,here's Monday:

Everyone is up at 8 am , and the fun begins in making sure the kids have had their breakfast. Once we can accomplish this the girls grab their weekly schedules and get to work. They do their corrections or most times everyone is coming at me at once because they didn't understand something they just read, or something they made a mistake on Friday,.
Once we can get past that , I can work a little bit with Maggie and her work since she needs all my time to teach because she is so young.
This is where the first cathing for the day comes about. We also do her first flush for the day to make sure we get the "belly buggars" that everyone affectionately calls them ( its mucus accumulation from her neoappendix for her Mitrofanoff), out so that it doesn't clog her catheters later on.
Then its more, " Mom, can you help me? " Mom I have a spelling test, " Mom I need to take a test in X, Y or Z subject."  Or me getting on my oldest to quit daydreaming.
After that is all said and done  , its time for the next cathing and is Noon and time to make lunch. The girls set aside their books, have their lunch, and take a break until about 12:30 or 1. Depends on when I actually get to manage to eat lunch. Some days I don't.
Once break is done , then the girls get back to work , I get back to work with Maggie and we're done before 2pm. Somedays we get done earlier than this but it just depends because the start and stopping when I have to cath can sometimes bring everyone into a stupor and the kids can lose their focus.
When the girls are done its right about time they are getting ready for their afterschool activities. They are either at cheerleader practice, band practice , karate, or whatever activity they are doing.
In between this its another cathing time.
While they are gone I can get dinner started and once their back we have dinner and its time for dishes and getting them to help.
Getting ready for bed, getting Maggie ready for her enema, then her gentamyicin flush, medications , pj's and to bed.
After all that is done I am preparing for another Religious Ed class for Sunday. It really takes me all week to think about what I want to do with these little kids.  Correcting worksheets, writing papers, workbooks and preparing the next day's schedule for the girls.  By this time its about midnight, and I'll climb into bed and read a book until I can fall asleep.

Tuesday is usually a repeat of Monday , usually added in with sitting up and putting together ideas for Girl Scouts,  or religious Ed. If we are doing crafts I'm usually sitting up putting something together to make sure that what we're doing is going to work for a group of girls, or 8 girls and boys in my RE class, to make sure to troubleshoot anything that may be a problem if I did a project and if its going to fit in our time schedule. I know tomorrow I have to make a bake sale item ( which will be cake pops) for the girls Rec Cheerleading Fundraiser tomorrow. Not to mention correcting papers, workbooks, or prepare things for lapbooking or notebooking activities that we maybe working on too.

Wed is pretty much the same as Monday and Tuesday

Thursday is the same  as Monday, Tuesday, and Wednesday, but with the fact I also go over to the school to help out with the Kids Club. Thankfully I don't have to prepare anything for it. I'm just there to help since Maggie is there anyways and I'd need to stay. I"m good for helping passing out papers, helping the teacher with any last minute things she may need, and handing out snacks.
After I get home from that I spend my evening typing out my lesson plans and emailing them in to the DRE, and working on any things I may need.  Not to mention working on the kids' school work schedules for the day.

Friday is pretty much the same. with the fact I can relax a little more in the evening because there is no need to have to schedule classwork for the next day. I'm usually though still working on some kind of activity in the evening, and Girl Scouts twice a month.

Saturday we are usually busy with band competitions, or cheerleading or whatever we may have going on.
And we're back to Sunday.

What I didn't mention in there because it would have taken up to much room in those little paragraphs are :

Insurance-  What can I say? There is nothing nice to say about dealing with insurance at all,. We have fought for just about everything we've needed for Maggie. None of it has come easy at all.  We've fought for medical supplies, we've fought for her SSI ( its amazing , I've seen kids with ADHD on SSI but my complex child that has a million and one things wrong with her , well that was just going to be something we had to fight for)  we've fought for her to go to Cincinnati, and boy have we fought because doctors here do NOT like us going. We fought for referrals and even had some doctors refuse to give us them so we could go.  We fought for insurance to let us go. We literally had to chance insurance altogether just to go to Cincinnati.  Now we will be losing that insurance and are being forced into an HMO and so its going to be another frickin battle and not one that we're sure we're going to win this time around.  Heck I even fought Cincinnati's hospital administration because they didn't want our 7% from the Access , that we had to switch to because  doctors were refusing to give us referrals.  We won that time.  We even had to fight insurance to have a nurse come in two times a day when Maggie was in PreK because she needed a nurse, something the private school sadly didn't have.  After that fiasco we went back to homeschooling. It was a good school, but not one equipt for Maggie.  

Our hospitals and doctors:   Maggie goes to doctors in three cities and two states. Depending on the expertise we need we have to travel either way. We live 35 miles from the city as we live in a rural area.  We live 4 hours from Pittsburgh, and we live 6/7 hrs from Cincinnati, Ohio.  
I am always in contact with our urology nurse and at times Colorectal when we need to be. Right now its been urology since Maggie's bladder has not been happy at all with this surgery. Its not holding what it used to be holding. Urology is upping the dose of her one medication but it doesn't seem to be helping the problem we've been having.  So far this year we'll be making our third trip to Cincinnati and its NOT cheap , not by any means. Even families who have money have a very difficult time affording medical trips.  After being gone for 2 months , it really has sapped us financially. 
We also have to figure out how to eventually move closer to Cincinnati because of the problems we have been having. We really need to be down there to deal with them, since the doctors here at home made it clear that Maggie is a liability and that freaks them all out so they don't want to touch her.  It was a nightmare just getting the one and only pediatric urologist we have to change a supra pubic tube ( that's even a longer story in itself).   We really need to move like yesterday but for now Maggie keeps her supra pubic tube until we can figure out something. 
We're hoping we aren't going to have any problems with this new insurance and all they need is maybe a referral from her pediatrician. Even with that said Cincinnati doesn't accept this insurance because it doesn't go down that far into Ohio. But we need it to see our pediatrician here at home in PA.  I can't win. 
Not to mention most appointments seem to be set on holidays and important dates and we end up missing something the other three girls are doing.  In May we missed the last day of school for Katie and Hannah, we missed them doing their Missoula theater, and sending them to camp.  We'll be also missing Halloween with them. We've even been in the hospital for the 4th of July and  Christmas and New Years. 

Other medical stuff- We recieve LOTS of medical equipment for Maggie. So much so we actually don't have room to keep it in. We keep it in big sister's room on a shelf but its not enough room, and even some of it is in closets.  If you saw it you wouldn't believe it was all for one kid. I didn't realize how much stuff we actually have for her until we had to switch to 180 medical to get some stuff the other medical supply company we're with didn't carry for her supra pubic tube. When I inventoried it I said to the lady on the other line " Yes, this is all for one child."  We have catheters of different sizes, we have saline, we have gloves, we have two different kinds of syringes, we gauze pads , tape, surgilube, feeding bags, lubricant for her urinary catheters, we have drainage bags ( for night) , leg bags if we need to go somewhere and I don't want to mess with catherizing her. We have BZK wipes ( we wipe her with before we cath ) and alcohol wipes.  We also get some diapers , but right now can't use them because they are to thick and don't work around her supra pubic tube. As long as she isn't leaking we don't use them and let her wear her underwear, they are more of a back up should she get sick because all bets are off of anything working when she's sick and she's back to being incontient , or if she gets a UTI she leaks.  
All of this doesn't include her nightly meds of Ditropan XL and her prophylactic med ( to long to spell). Along with her Citracel to bind her up a little and her vitamin D, and any meds she needs when she does manage to get a UTI.  

Friends-  I'm not sure what those really are.  I have a definition of what I think they are, and then there is a definition of what they have or have not been in our life.  We have two types of friends:  The first being:  The we'll say hi to you or ask you for something but don't expect us to call, invite you to , or do anything with you and your family type friends.   As it stands after we had Maggie people like to pretend we only exist when they need something. Other then that , no one comes over, no one calls us.  We do see people at church and talk with them, we see people at the store, we say hello and might chat. But when it all boils down to it we're just here when its convenient for people.  Whenever we've reached out and tried to make friends in our life, people don't have the time or they are to busy. We're just good to chat with and say Hi to.  My children aren't invited to sleep overs, they aren't invited to birthday parties ( though Hannah did go to one last year), they aren't invited to come over and play . As for Tim and I we're never invited to anything , not even weddings or parties.  We are sadly overlooked and we are good people. We aren't perfect, no one is, but we're not bad, and we actually love to have fun. Heck its been a super duper long time since someone asked me to go out. Say 6 yrs to be exact. 
Then we have our online friends. These are people we may see(depending if we have money to go) once every two years at a VACTERL Conference, or we've never ever met at all. These people tend to be the ones that wished they lived nearby and we feel the same way too.
So we basically have each other, and that's it.  

Marriage- Just like any marriage we have our struggles but even more so with a special needs child. The average is something like an 80% divorce rate.  We really try hard not to be in that statistic. Its about 20% more than the national average for regular people that do not have special needs kids.  Having a special needs child puts a real strain on a marriage. My husband and I have been married for 17 yrs.  We are really trying to work at it. 

With all of this said I wouldn't change anything in the world. I can't imagine my life without my girls or without Maggie.  I can't imagine not doing the things that I do because I do feel like they make some kind of a difference. I don't regret having Maggie because we've met wonderful families, ones we wished lived close by because its hard to not feel like your the only one in the world because no one knows what VACTERL is or even how to treat it really. Maggie loves to meet other kids like her at the conferences but when we come back home she is alone and kids don't understand why she has four fingers , or why she never needs to go potty like they do , or why she has that funny bag on her leg ( we use a cover but still the kids want to know what it is.)
  If you've actually read all of this and made it this far you truly are an amazing person too because just typing it all has made me tired.