Rough Few Days

It has really been a bumpy ride lately.  I don't even know where to start on this one.

I guess I should start with a fellow special needs mom.  She blogs, like may of us do to keep sane and make sense of the world around her.  She is awesome.  I love what she writes and it gives me hope.  Recently she wrote something that made people very upset.  It wasn't a big thing, just a little thing in passing.  But it got very blown out of proportion and as a result she had to shut down her blog.  I wrote to her expressing my support.  I told her that I even once wrote and questioned some choices my old church was making.  It did have some fallout, but I firmly stand by what I wrote.  People don't always like to have mirrors held up to their faces.  The truth can sting.  I hope that she finds the strength to blog again and not let others force their ugly thoughts on her or her family.

Then we celebrated Cary's first Christmas.  I was so excited!   The flu has been working its magic in VA and some of my family was recovering from it.  Cary's BPD doctor was very nervous about flu season as the shot has not protected like they thought it would.  I was given strict instructions on keeping her away from places, things, and people.  To make a long story short even though my family was well on the mend Cary was not allowed to be around them for Christmas.  Cary and I stayed home while Shannon and Marvin went and had a nice family dinner and presents.  I think I cried most of the day.  I felt so mad and cheated.  Cary, on the other hand, could have cared less and played with her new bumpy ball and dancing piggy all day.  It was good that at least one of us felt festive.  I did finally pull it together.  Thanks to some caring friends calling in and a big slice of apple pie and reflection on what the day is really about I ended up enjoying time with my daughter.  Plus my rocking mother in law sent home a ton of goodies!

Yesterday we went to MCV for an EEG.  I had scheduled that and a neurology appointment all in one day.  After dropping off Marvin and Paw paws house and picking up my friend Heidi, we were off.  Cary was treated to a facial scrub and then had so many wires hooked up to her she could have been the bride of Frankenstein.  Cary slept through the whole thing.  Thank heavens.  We were in there for about five minutes when the nurse excused herself.  Heidi told me that that usually is not a good thing.  She came back and was happy to hear that we saw the doctor the same day.  So then I started to worry.  Heidi told me that it probably was a little thing.  So I relaxed some and we had lunch and went to the doctor.

It turns out it wasn't so little.  Dr. A told us that they expected Cary to have abnormal brain scans.  She had massive brain bleeds at birth and hydrocephalus.  What they didn't expect was so much abnormalities.  Cary is having many preseizural brain waves.  Lots of them.  So many that we have to go back in a few weeks for a 24 hour EEG.  Then she will go on medicine.  I knew that she may have to do this, but she is so young and little.  I was hoping to wait until she was 3 or 7 or 12.  I felt like I had been hit by a ton of bricks.  Again.  We also discussed her ability to walk and talk due to all of her brain damage.  Dr. A was hopeful that she would be able to do some things but also realistic on the situation at hand.  Again, feeling like I was being hit by bricks.  It was hard.  I like Dr. A.  She is awesome.  But my daughter is my world.  And it is hard to hear about limitations and brain malfunctions.  She will also soon bear a new label.  When she is 2 she will be classified as having Cerebral Palsy.  So after dropping Heidi off I cried all the way home.  Cary probably thinks mommy is some sort of basket case at this point, because she was conveniently ignoring me.

So I cried, mourned, and raged against it all.  Then I did some digging.  CP is not a death sentence.  It is brain damage, which Cary has.  It also is more common in boys.  Everything I have put my hands on so far and read boils down to the same thing.  It doesn't get worse.  It simply is.  Also, the more a person can do for themselves, the better life they had.  Aggressive therapies and early interventions are the key.  So me sitting around and crying is not going to do a fat lot of good.  Yes, it releases emotions, but it does not help my child.  So what happens next?  We step up her therapy.  It is important for me to get vision to show up and be on board on this.  Shannon is also pitching in more and not treating her like she is glass.  I have also been working on getting a Montessori curriculum together for Cary.  By immersing her in a language rich environment with a heavy focus on Sensorial as well as simple Practical Life skills I am on my way to giving my daughter the education she is entitled to.  After all, I am a teacher.  The stakes are so much higher this time around though.  Every gain Cary can make is a step forward to a better life for her.

So I will continue to fight, speak out, and bring out the best in my daughter.  She is amazing, funny, and my little hero.  Together we can conquer the world!

We're still here!

Really, I haven't gone that far.  I was all ready to post last Friday the glowing reports from the Virginia Institute of the Blind and Deaf.  I was ready to laugh over how much fun I had with my mother in law shopping and just having fun.

Then I got home and heard about CT and it just didn't seem right to have a really happy post.  So I took some time off and grieved with the families.  Then my son got sick, and my husband got the flu. I got some crud.  Cary has remained healthy so far.  I am thankful  I hope she stays well.

So first things first.  Cary's vision therapist managed to get out of coming once again.  I was ticked off heading down to the Virginia Institute of the Blind and Deaf.  I was greeted warmly, they listened to my concerns and began basic testing.  After a good three hours of testing the beginning results are encouraging.  Cary can hear sounds.  That is the good news.  The bad news is that she needs an ABR. This will test her ability to understand what she hears.   Often cortical blindness and cortical deafness goes hand and hand.  We go back the 11th of January.  It will be two or three more visits before any "real" results can be given, but so far things are looking good.  It was nice to hear positive results.  Plus I fell in love with the school.  It was my dream school for Cary.  But Staunton is over an hour away.  Sigh.  Time will have to tell.

So after Marvin was sick Sunday-Tuesday he was able to return.  I was glad.  It was his Christmas week.  He had a whole week of testing before so the poor kid needed some fun.  I will have to say, I love classroom parties.  I have worked at school that have allowed them and schools that don't.  I will also have to say in my humble opinion  that kids who are allowed to have time to celebrate have an outlet for all that extra holiday energy instead of having to bottle it up and pretend it is not there.  This has been so helpful for Marvin.  And mama:).  But that is just me.  I also got some photos of the kids.  Marvin insisted that Cary Lynn come along and I was happy to bring her.

Marvin playing musical chairs.  Interesting to note that musical chairs is not a commonly played game any more.  

Marvin decorated a gingerbread house.  He had a blast making and eating it!  

Cary was also allowed to partake in the icing portion of the fun (yes, I know that it is not the best choice for her to eat, but the squeals and smiles made it all worth while).  

So all in all it has been a very awesome start to Christmas despite illness.  As we get closer to Christmas I am excited to celebrate with my little ones and look forward to the fun and joy of this holiday season!  

Merry Christmas everyone!! 

Beginning to see the light

It has been super busy around here (translation:  I would kill for a dull day).  Christmas has exploded around our home.  The tree, lights, and various decoration.

For a child with visual impairments, I often wonder what Cary sees.  I put up the tree and lights and held her up to it.  She turned away and cried.  Not good.  She has accepted the tree since then and seems to enjoy the jingle bells I have placed around her play areas.

Marvin, on the other hand, loves it all!  He enjoys "helping" me with the decorations and generally getting in the way.  But he is so enthusiastic about it all.  It is hard to stay mad at him.

It has also been a rather frustrating couple of weeks in the vision department.  I won services for Cary weekly.  I felt that this was and is what she needs.  Vision therapy connects her to her world.  I thought that I would have weekly services until she turns three.  Oh boy, was I wrong.  According to her vision therapist we are "trying out" this for a month.  In other words, she does not want to make the trek out here weekly.  She is a great person, but complains about coming out and insists that I am doing "just fine".  It is like the proverbial adult patting a child on the head and telling them to scoot along.  Plus, she "double booked" this week and "was unable to fit me in her schedule this week".  Plus there is Christmas break coming up and she "won't be available."

So I took some deep breaths, hung up the phone with her, and proceeded to have a mega screaming fit.  Luckily, Cary was asleep in her room with the door closed.  After I yelled and and raged I began to think about what I could do to help Cary.  After all, yelling is NOT going to help her vision and really doesn't do much except wreck my vocal chords.  So then I thought.  I channeled my old boss and remembered our parent ed night on executive functioning.  I remembered her and my co-teacher asking what we wanted our children to be in the future.

So I made a list.  I visualized Cary through the years and my goals, hopes, and dreams for her.  My biggest hope, dream, and goals all align with her sight.  So then I went to step two.  If my vision person isn't willing to hear me out and support us what do I need to do next.  I began digging through all of notes and lists I had.  I ran across the Virginia Institute of the Deaf and Blind.  Long ago I had e-mailed them but had never heard back from them.  They have programs for families with blind children.  I picked up the phone, said a quick prayer, and called.

They answered!  I talked with a wonderful woman who actually listened to me and heard what I had to say.  I get to go to Stanton, VA next week and there they will give Cary a hearing screening.  What you say?  Hearing?  Yes.  Cary apparently flunked her newborn hearing test and there never was a follow up given.  Well there was supposed to be, but the previous foster parent never took her.  Surprise, surprise.  So anyway, to get evaluated for the program I am going in for the hearing screening.  Then I will get vision support as well.  Sometimes the big changes come about with small steps.  But they have to be on the right path.  I feel like I am starting to find that path.

I will go.  I will tour the school, the pre-school, and meet the people who are willing to help me help my child.  They did tell me to let my social worker and Infant Toddler know as a courtesy.  I told the social worker and she said go for it.  Infant Toddler never returns my messages so I left them one and frankly, don't expect to hear from them any time soon.  I will also inform Cary's therapy team that we are doing this.  I know speech and PT will be for it.  I am sure vision will not be pleased, but I really don't care right now.  My priority is my daughter.  Not vision's feelings on the matter.  My children are going to get what they need.  It is their right.  I will be my daughter's voice until she is able to be her own voice.  One of the greatest gifts I can give my children is the power to advocate for their needs. My children are survivors and strong.  I am blessed to be their mama.

My feisty daughter

We are not a family of meek people around here.  I was born stubborn and continue to be stubborn.  I tend to be a bulldozer and just keep going until I wear people out or plow them down most of the time.  When I married and moved down south some of my friends predicted that I would be walking around like some bad motion picture experience moaning and wearing hoopskirts and fainting helplessly.  The only thing that I have picked up living in the south is a little finesse to my bulldozing.  I still get what I want most times, I just learned a little more tact and charm while doing it:).

Shannon and Marvin tend to be very strong willed and feisty as well.  Marvin has also picked up charm as well and tends to charm his way out of life.  Very lethal, I assure you.

When Cary came to live with us I was a bit afraid for her.  She seemed so docile and easy going.  I figured she may as well put a target on her back and be done with it.  I worried to no end about how she would find her voice with the three of us around here.

My first small glimmer of hope was when we were in the hospital and the PT and OT  tortured her in the name of making small children cry,  I mean, showed us muscle stretching exercises.  She resisted with all her might, but because she was so small and sick, it wasn't much of a fight.

When we came home she was still pretty docile.  Then we started Speech, Physical, and Vision Therapy.  It started with speech when her therapist tried to get her to use a chew tube to strengthen her jaw.  Cary clamped her lips down and glared.  "My," clucked Ms. B, "we certainly have a little strong will there don't we?"  It also began to bleed over into PT.  Cary went from actively screaming like she was being killed to doing what ever she could to fight back against injustice.  And actively screaming like she was being killed.

Cary is coming into her own.  I was really worried about nothing.  She has found her voice.  And it is a loud one.  She lets people know what is on her mind and will give you many pieces of it as well.

As you can see in the picture above, she is telling me what she thinks about having to wait for her food for more than two seconds.  It is not just the crying.  I am convinced that she bites on purpose.  She bit her GI doctor the other day.  Well, if you shoved a thermometer up my butt, I would probably bite you as well.  

Yes, Cary has found her voice.  I was really worried for nothing.  I am glad.  It means that she won't walk through life letting people push her around.  Or shove thermometers up her butt.  She is going to be a strong assertive person and I am thrilled.  Slightly deaf from all her screaming, but thrilled none the less.  After all, she has to be strong to survive in the world and from her brother taking her toys away from her.  I am excited to see what happens next in her development and proud that she has joined the ranks of a very strong willed family!  

Updates and Such

Wow,

I have been gone a little while from my blog.  I did do a blog over at Hopeful Parents, my blog away from home, but it has still been a while since I have sat down here.  I have been thinking about posts and I have a lot to share, but I needed a little time to breathe and regroup.  I was pretty down at the last post as I was having a hard go of it.  It isn't always easy having special needs kids, but it is also a blessing.  So to catch up on what has been going on:

Doctors:  Cary is now moving out of the specialist a day phase and we are moving into maintenance.  The doctors are pleased with her progress.  They point out that she has some chunky thighs (I guess this is good. Must be a medical thing, they all seem really pleased with it.)  and is growing hair (once again real pleased).  Our last big appointments were GI and feeding clinic.  Both said that she is 100% perfect weight for her size.  She is getting taller and eats basic solids.  She now sucks down food like it is going out of style most days and her NG tube is all gone.  She is on the adjusted WHO growth charts and is at proper 10 month size on these charts in the lower end.  That is her adjusted age, 10 months.  These charts will follow her till 3 or so and hopefully, she can graduate to the unadjusted charts by then.

Primary Doctors:  Unfortunately, Cary has joined the disease of the month club.  September was the stomach virus that put us in the hospital, October was a bacterial infection, and November is Strep Throat.  The fun never stops.  My sister-in-law warned me she is probably going to catch everything.  She is probably right.  Cary has been in a sterile hospital for a long time and between doctor visits, a brother in kindergarten, and being in the real world, he poor immune system is probably being pelted.  She responds well to antibiotics and is on the mend, but I hope she stays healthy for more than a couple of weeks!

PT, Speech, Vision Therapies:  I met with the director of Infant and Toddler Connection for a review of Cary's IFSP plan.  Cary had some lofty goals assigned to her.  She missed over half of them.  I convinced her to modify most of them as some were just very unrealistic expectations at this time in Cary's life.  I mean really, get dressed without crying at all?  Come on.  What baby doesn't squawk a little over getting clothed.  So now we have more realistic goals in mind, like sitting and rolling over.  I was also able to get vision therapy weekly.  Before we had bi-weekly and vision is what she needs the most.  Her therapist balked at coming weekly and tried to tell me I was doing a cracker jack job.  I yanked rank and insisted that in order to tie together everything vision was a key element.  I won.  I do feel a tiny bit bad because vision travels over 2 hours to get to me, but I did offer to go to her and that was refused so what else could I do?  Cary continues to make progress, but on her terms.  She is very stubborn and when she is done she is done.  I feel like sitting would happen a lot quicker if she was more cooperative, but it is what it is.  And I am stubborn too so I admire that trait in her.

Future Goals:  They started talking school with me for her, but at this time Shannon and I are keeping her home for one more year.  There is a really great school for the blind that I am looking at for when she turns 3.  Infant Connection was horrified and talked about "inclusion" and what a big deal that is.  I asked what they offered here for her.  While she would go to a "special needs classroom".  I guess their idea of inclusion is a classroom segregated with a garden variety of special needs.  O.K.  I may look and act like I fell off the turnip truck at times, but if she can't go to regular school why can't I cherry pick what would be best for her?  Anyway, I have a year and a half before I make that choice so I am not going to stew over it now.  I don't know what she will or won't be capable of.  Right now I am schooling her at home with the Montessori method and Reggio Emilio methods she is doing really well with it.

Marvin:  Marvin has gotten over his Halloween issues and is doing really well at school.  He surprises me with how well he has adjusted to public school life.  I really wanted him to pine more over his lost Montessori life, but Marvin just looks forward.  His teacher rocks and I am really really relieved not to be his teacher anymore.  I love my kid, but it was really stressful to be teacher and mommy.  Now I am just mommy with a small side of teacher and our relationship is much better that way.  Marvin loves his sister and reads to her, sings to her, and plays really well with her.  Thankfully, he has stayed pretty healthy this year.  He is looking forward to Christmas and raising an animal as part of his 4H work.  Yes, we have to get an animal for him.  But that is another post.

That is kind of a quick sum up of where we are now!  I have lots of other things to talk about, but they can wait for other posts!  Happy Thanksgiving!

No One Wants to Hear

I have found that wading through this new and often foreign world with Cary Lynn that there is only so much that the rest of the "normal" world can stand.

When we first got Marvin everyone remarked on what a miracle he is.  How special he is.  How it is great that you just "can't tell" that he is different.  Not that I was shy about sharing.  I think that it is important to let people know that abuse is real and out there.  But because he "passed" and looked and acted "normal" no one seemed to mind.

Enter Cary stage left.  I am equally open about her.  But the reception I get from most is very different.

You see Cary can't "pass" as a "normal" child.  She looks different.  Her eyes don't focus on you.  Her facial expressions are a bit different.  She slumps, can't sit on her own, and her head and facial features are different.  Not big neon sign different, but enough to get questions and funny looks.

When people first asked about her, just like Marvin, I would begin to share.  But unlike Marvin a lot of people start getting overwhelmed.  I have found out that even though they may ask most really don't want to know.  I understand that it is a bit overwhelming, but you do not have to live with it every day.  I do.

So I have found out that there is a lot that people don't want to hear.  But that does not mean that I do not have a lot to say.  I have plenty.  That is part of why I blog.  It lets me say it.

People don't want to hear that my child has disabilities.  She does.  So does my son.  So does my husband.  I have learning disabilities.  I cannot pretend they do not exist, wish them away, or pray them out.  They are there.  To deny them would be living a lie and being a fool.  I prefer to confront them head on and deal with it.

People don't want to hear that Cary has a lot of doctor's visits and still requires a lot of extra care.  I hear advice on how to help her grow out of it, herbal treatments, once again praying hard that it will "go away", and all sorts of really stupid things.  People just want to hear that she is getting "well" and doing better.  So I have just learned not to say too much.  I tell people what I think they want to hear.  Don't get me wrong, Cary is doing better.  She has discovered that food is tasty.  But unless you know me really well and know what to ask me you won't be getting a lot of extra information out.  I have had my feeling hurt a bit too much lately to become an open book.

People don't want to hear how much it hurts me that I don't get to do the stuff that regular new mommies do.  New mommies get baby showers, lots of visitors, balloons, and all that jazz.  I got to spend it in the hospital worried that my daughter wasn't going to live.  Don't get me wrong, I don't NEED a baby shower.  We were going to have a meet and greet for Cary, but she was hospitalized.  I just mourn that I don't get to do the same stuff that others get to do.  It is hard to be different.  No one wants to listen to me spill my guts about it either.  They figure it was my choice to take this on and I should just have a stiff upper lip about it.  It WAS my choice.  But I have feelings too.  And they get hurt really easily.  I am a softy who cries at commercials that involve toilet paper and basic household products.

People also don't want to hear how hard it can be to be the parent with "that" kid in groups.  It takes a lot of guts for me to do regular stuff.  I went to a story time today and got teary looking at other one year olds.  Not that the moms and the lady who ran it weren't perfectly nice.  They were.  Plus Cary loved it.  But it is hard for me to see other kids and wish that my kid was up and running.  Or crawling, heck I'd even just settle for her destroying books like the other babies.  It takes a lot of guts to be that parent.  But I can't avoid every social situation in the world. Cary has the right to enjoy things her peers do.  She can't live in a box and she wouldn't be happy that way.

Things need to be said.  Words left trapped and left unspoken can really drag you down and eat you up.  Feelings left bottled up make you feel rotten.  So I write.  In hopes that someone hears what I have to say.  In hopes that there are still people who do care.  In hope.  Because that is what carries me towards the next day.  Hope.  Hope that things will be better.  Hope that I can make a difference for my daughter and others who have to live the life I live.  Hope.  A powerful and wonderful word.

The "art" of trying to find normal

We survived another week of doctors.  The one thing I have learned so far is that the more doctors you see the more different opinions that they will have.  Sometimes I don't know whether to wag my ears or listen with my tail (not that I have one but that is not the point).

We went to her PCP Wednesday and they pronounced Cary a fine specimen of babyhood and told me to keep up the good work and gave her five shots.  I felt great.  Then we went to the GI doctor today.  I was once again reminded that I had a medically fragile child and when did I want a G-Tube installed.  Say what???  I patiently informed the doctor that she was eating just fine orally, thanks.  He brought up that she was choking on food and informed me of the danger of it.  I once again told him that I had worked with a few kids and was well aware of the dangers of choking, but Cary is just learning to eat and she has poor oral skills.  Seeing that he was not going to get me to sing and dance for the joy of G-Tube installation he let me go with a prescription for reflux, constipation and tests ordered to track her digestion which is what I wanted in the first place.  I do have to go back in a month to see if she is growing, gaining, and not choking.

So I was a little mad (alright a lot mad).  Cary was sleeping after being up since 3 a.m. and I really needed to do something normal.  I didn't feel like scrapbooking (my normal love but I was too cranky and afraid I would mess up more than make nice things) and I was too full to feel like baking after eating a ton of red pepper hummus and crackers.  So after reviewing my options I decided to make art for the kids.  I made home made play dough.

If you are ever looking for the world's best art blog I highly recommend The Artful Parent.  She is one of my all time favorite blogs and I use her play dough recipe time and time again. If you go to her blog on the right hand side part way down is a directory and you will see play dough and clay.  Click on it and you will get the recipe and great ideas.  I tweaked it a bit for fall and Halloween.  I added Pumpkin Pie spice and tried to food color it orange.  Unfortunately, it ended up a bit more brown due to not enough food coloring and the pumpkin pie spice.  It makes a ton as you can see here.

I have two whole bags and it smells great!   After I made it Cary woke up.  I fed her and had to place her in her chair for sitting practice and to combat reflux she started getting fussy so for something new and different I put some play dough in front of her.  The goal is to get her eyes and hands to work together and to feel new textures.  It worked!!  She not only touched and felt it she ate it!!!

I was so excited to see Cary do something a "normal" kid would do.  A little frustrated that I can't get her that excited about solids but so happy to see this.  She explored and tasted for quite some time.  It was great!

Then I set up an area for Marvin.  I used random items as well as some old candy that was getting ready to go in the trash as we don't eat the stuff.

Here is the set up.  Note the shiny aluminum place mat.  Yup, I go all out around here.  Marvin was so excited.  He also insisted that I set up a work area as well and join him.  I was happy to do that.  I still felt the urge to pound on something.  So here is Marvin and some of the stuff he made.

Play dough and paints are favorites at our home as they can be very open ended and I feel he needs that after a day at school to decompress.  He spent about two hours with it and made pumpkins, monsters, and pretended to be a star on the Food Network with his own cooking show.

Here are a few things I made as well.

I found that the more time I spent with this the more normal I felt.  It was fun and I got to do normal family activities and feel not so grumpy.  I also know that art can be extremely therapeutic and good for kids and adults as well. So I am going to try to incorporate more art into our lives and more normal family activities in hopes that I can strike a good balance and teach the kids to explore their creative sides as well.  And just have fun for goodness sake.  We have not had this much fun in a long time and that is a mistake I plan on correcting.  I want to enjoy the little moments and have some happy memories so I am willing to put the time and effort into it.  It is so worth it!

Cary is One!!!

On Sunday my daughter reached a milestone that many didn't expect her to make.  She turned one.  My child defied odds and lived.  The doctors tell me she is a miracle.  I would have to agree.  Even though I am tired to the bone at the end of most days my daughter adds a new dimension and richness to my life that I was lacking before.  I feel that we are a complete family now.  It is a both a blessing and an awesome task.  I am busy and always on the run with two little people in the home.  Here are some pictures (I finally figured out how to get them on the stinkin' computer by myself!  Go me!)

The cake done by my most fantastic mother-in-law!  Bonus toy at the top (which she is deathly afraid of, but that is another post.)

Cary and baby Stella, a gift from Marvin.  Notice the matching binkies.  We were pretty much binkie free but then we decided to cut teeth like crazy so we are back on it again.  Luckily, it is getting better so she is going down on the use of it.

Aunt Heidi giving Cary a puppet show with a day glow dog hand puppet.  Who says I don't pull out all the stops for a fantastic party:).

Gramma got her a dolly as well.  Heidi insisted that she called it "Anna" .  It sounded more like Aranah with a binky in the mouth, but I know better than to argue with Heidi so Anna it is.  The girl is set in the dolly department now and only seems to want to play with balls and that day glow puppet.  Sigh.

All in all it was an awesome party,  I am so thankful that we got a chance to celebrate this very big milestone in her life.  And I hope there will be many more!

Finding Our New Normal

This was a quiet week.  By quiet I mean that the therapists came to us and we didn't have to leave the house.    I have to say that it was nice.  Too bad that I still have lots of doctors to see this month.

I did survive the endocrine doctor.  Cary is doing great and her pituitary gland has kicked into gear and is helping keep her diabetes in control.  Now we are on maintenance and we just see Endocrine every 2 months.  So that was great.

I even did something normal last weekend.  We met up with friends and got to go to the Children's Museum.  It was soooo stinkin great to do a normal family activity.  Marvin got to play with a friend and I got to feel normal.  Normal is such a good word.  And an even better feeling.

Then we were visited by Cary's new therapist team.  Speech came on Monday and liked what she saw.  PT came on Wednesday and made Cary do a ton of painful (for momma and baby) exercises.  She was able to really get Cary to work and insisted that I force tummy time at least 4 times a day.  We are working on it and Cary now is developing a healthy hatred of the exercises.  But she is doing it.  Vision will come bi-weekly and she came today and was really excited over how well Cary did.  She gave me lots of work to do with her and I will be stuck on the floor until I am about 100 at this rate.

So in between all of this we are trying to establish a new routine and a new normal.  It isn't easy.  It is hard to hear other parents talk about little Suzy's first step or little Tommy's words.  It is hard to look at "normal" kids and realize that yours isn't.

But then I stop and think.  I think about how the Endocrine doctor told me that Cary wasn't supposed to live.  How she nearly died in the hospital.  Then I realize that it isn't a race to see how soon she can do this or that.  It is a journey.  A journey that I need to enjoy.  Plus, who decides who is normal or not.  I certainly don't qualify as normal.  Neither does my husband or Marvin.  We are all "quirky" and I rather like us that way.

As Cary's first birthday approaches I look forward to celebrating with her and look forward to this exciting part of our journey together.  As a family.  The way it should be.

Another Doctor?

It seems like all I have done this week is go to the doctor. Correction specialists.  Many many many specialists. 

I remember when I was a teacher and had to sit down to that dreaded conference.  The one where you tell mom and dad that something is not right with their child.  That you are not a diagnostician, but you see stuff that isn't normal.  You have the Kleenex, the water, and your staff with you.  It is a hard conference to give.  I hurt with the parents.  This week I gained another new perspective.  I WAS the parent.  The doctors had Kleenex, water, and just the right words, but it still was hard. 

I learned new phrases.  Spasticity, epileptic risk, Pulmonary BPD, nystagmus, and many other big words.  Words that I am lucky to say or spell right.  I wrote them down and am now working on understanding them. 

But there were other things I learned to.  I learned that VCU cares about me as much as my daughter,  They asked me how I was, offered support, strenght, and most of all hope.  They answered my questions, listened to my concerns, and assured me that I was on the right track.  I learned that my friend Heidi will drop everything just to come to appointments with me so I don't have to be alone. 

Most of all I learned that I am Cary's parent.  That a specialist may tell me something, but I may get a better result doing things my way.  I had forgotten that for a while.  I thought that if I wasn't doing it their way that somehow my daughter would slip into a great abyss.  Well, about half way through last week I realized that I do have a little experience in early childhood and a lick of common sense so I started trying some new stuff.  Guess what?  Cary is still ticking:).  In fact, she is doing better my way.  So now I ask more questions.  I want a rationale for doing it their way.  Lets just say that some people don't like that.  Most do, but you get a few stubborn ones along the way.  But even they grudgingly admit that with 105% gain from the hospital that I must be doing something right. 

So today we are resting.  Cary's lungs are great, her neuro skills are delayed but within spectrum tolerance (that means she is slow but working to catch up), and her sodium levels are stable but that changes day to day.  Tomorrow I battle with endocrine on her diet.  I want her to be off of her nasal tube as she has discovered she can pull it out and we need to come up with a solution to how much she eats to keep her DI regulated but not so much that she becomes sick.  Every visit sharpens my mind for battle of Cary's best interests. 

After all at the end of the day I am the one who takes her home, not the specialists.  I am her voice and her advocate.  I am her mother.

We're Home!!!

First of all I want to say thank you.  It seems so inadequate, but after my last post I was given books, blankies, movies, a great chicken meal, clothes, movies to watch, and most of all your company.  I needed it.  I felt stronger and like I could handle the many challenges ahead.  

We were finally discharged after learning to insert an NG tube down Cary's nose and how to pump feed her if she refused to eat.  Which is what she was doing to at least half of her food.  She is slowly getting better at eating, but it will take time. 

We came home just in time to get ready for my parents to show up from Colorado.  We planned on laying low this past weekend and just enjoying family time.  We had a great weekend and by Sunday night I was taking Shannon to the ER.  We just can't catch a break around here. 

In addition to the love, joy, and laughter Cary is bringing us she also gave us her stomach bug.  Shannon got it pretty bad and passed out in our bathroom due to dehydration.  Luckily, a trip to the ER, some fluids IV style and a prescription for anti-nausea meds was all he needed.  I was able to get the doctor's blessing to take the meds if I needed them.  And I have.  My turn came yesterday and now I am fighting with this awful stuff.  I am surrounded by clear liquids, some jello that I just tried, and the meds. 

Thanks heavens mom and dad are here.  They can't do the tube feedings, but they have been great about keeping the kids entertained so Shannon and I can rest and get rid of this nasty thing.  It is nasty too.  You feel good for a while and then feel like you have been hit by a mack truck.  In the stomach. 

But despite all of this, I am so glad we are home.  I treasure my daughter and every day she tries something new.  She is starting to try to roll over, loves to babble, and is beginning to hold her head up.  We are convinced that she wasn't worked with in her previous foster home so she is further behind than she should be.  We are working hard, despite feeling like crap, to get her to try new things. 

We will continue to move forward and learn to navigate this new course that we have been set upon.  Hopefully, we will be rid of this rotten bug soon and Marvin and my parents will stay well.  Thank you once again for all the love and support!  We couldn't have done it without you!! 

What we need right now

-What good is it, my brothers, if a man claims to have faith but no deeds?  Can such a faith save him? Suppose a brother or a sister is without clothes and daily food.  If one of you says to him, "Go I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it?  James 2:14-16 

I don't care what you believe, those are words to live by or think about.  And I have been.  Thinking about them.  I am not a great person in a crisis.  A building could be falling over, bombs droppings, and people bleeding and I still wouldn't know what to do.  I am a person who needs directions at all times.  Not a real leadership quality, more sheep like frankly, but it is who I am. 

But recently I find myself trying harder.  I am holding doors open for people with full hands, giving out quarters for the vending machine, just smiling a little more at someone who looks like they need it(believe me if they are here and not a nurse, they need it). 

I also am trying to help out nursing interns through Cary's daily routines.  We are a teaching hospital and Cary is a unique case so the more they learn from her the more they learn how to help her.  Yes, we are still at the hospital.  It looks like it will be awhile before we go home.  Everyday is a new test.  Tomorrow we are looking at an x-ray to see how her bottle latching skills are.  Not a biggie but frustrating none the less.  I want to be at home.  Period.  Her diabetes is getting under control but because the previous foster mom neglected to do so much we need education to help our daughter achieve her full potential.  After talking to OT today, they are positive that she is going to come a long way, but frustrated that nothing has been done with her so far.  It is like a bowl of potatoes on the counter.  You can sit and stare at them all that you want, but they won't get mashed unless you do some work.  They will just rot. 

I am also not good about telling people what I need.  I like to think I can just do it all, but I am getting exhausted trying.  So I have figured out that I need help.  And support.  And prayer. 

Don't get me wrong prayer and warm thoughts are great, but as James said sometimes a little practical backup is called for.  So here are some of the needs we have right now in no particular order: 

1. Company.  As much as I love nurses, doctors, PT,OT, ABC-XYZ they cannot replace friends and family.  If you are uncomfortable being in a hospital Shannon or I would meet you downstairs in the cafe or other non-threat areas.  The only reason I am here is because of Cary, not for kicks and jollies.  You can even phone and talk to me.  Mind you, I get interrupted quite a bit because of nurses and such but I still like human voices. 

2.  Food.  We need healthy food.  Not Chick-Fil-A or carb crap.  O.K.  a little carb crap.  You can just drop it off and run or stay and visit.  It is really expensive having to buy all of our meals and the choices are not always that healthy.  We have a tiny fridge here and one of us goes home at nights so the food would keep safe. 

3.  Stuff for the baby.  Right now Cary is stuck to an IV and wires.  They decrease daily, but she still is crib bound a lot.  My good friend bought her a balloon and she has really enjoyed looking at it.  Her room is bare and cold.  They have broken and dirty toys here with no really good baby stuff.  I have read her the same three board books over and over and over.  She is not complaining, but I am.  A mobile, balloons, a toy or two that flashes and lights up to help improve her focus.  Soft thick blankets.  They keep the room like a Popsicle and she is getting a skin rash from hard scratchy hospital sheets.  CDs.  Anything really.  Just something to keep her entertained for how ever long they are going to imprison us here. 

4.  Movies.  For us.  Shannon or I sit up at nights and are here pretty much all day long.  Cary does sleep.  So a nice comedy would be good to watch on the laptop.  Shannon has a thing about depressing movies so the happier the better. 

I'm not posting this list to guilt people into doing things.  Please don't feel that you must.  People have been asking and as I said I have a hard time with the idea that I am not wonder woman.  I am happy with the prayers and thinking of yous as well.  I really appreciate them. 

Thank you all for your love!  We are still holding on to hope! 

Darkest before the dawn

So I had really planned on having this wonderful, heartwarming, mushy first post of family life at our home.  I had planned on browbeating Shannon to get the picture function to work so everyone could oooh and ahh over our little miracle.  I had planned to laminate a Canada unit for my work, bake for my parents visit in a week, review a book manuscript that a good friend intends on publishing soon, and do lots of other things. 

Instead I have spent the past 4 days either at the doctor or in the VCU/MCV hospital in Richmond.  I have gone up and down like a roller coaster, have seen how little sleep a human can function on, and the 20 pounds I have managed to drop are creeping back on thanks to a huge carb/comfort food binge. 

But let me back up a bit.  Cary came home on Tuesday.  We all loved on her, fussed, cooed, and spoiled her rotten.  Even Marvin.  Good grief.  I went to the bathroom one time and came out to find her surrounded by crayons, paper, tractors, and 3 race car piled on her.  He was sharing.  I couldn't fuss about that could I?  Thank heavens she has crappy eye hand coordination.  So she couldn't get it near her mouth, but not for lack of trying:). 

By Wednesday her appetite had decreased slightly and I was worried that she was constipated. I talked to her social worker and we agreed that I should take her in to the doctor.  On Thursday, still no poop and she threw up a little.  Again, no big deal.  Babies throw up right?  But deep inside my head there was a little alarm bell starting to go off.  So I took her into the doctor they gave her a suppository, it worked and I found out she had been on Mirlax for her constipation issues.  Once again no biggie.  I commented on her lack of color and appetite that afternoon but I was brushed off.  So I took a breath and chided myself on being overly paranoid.  But something still felt off.  Cary refused to eat that evening and was unusually lethargic.  Once again I felt a little nervous, but my sister in law was over and I chatted with her and I decided to relax a bit and that I really must be loosing my mind. 

I checked Cary through the night and she slept through her feeding.  I had decided at that point there was something wrong and unless she ate normally we were going back to the doctor pronto.  So I fed her a bottle and 15 minutes later she was projectile vomiting.  Not once, not twice, six times.  Violently.  She was turning purple.  I was trying to stay calm, get Marvin on the bus, and tell him that sis had to go back to the doctor, but I am sure that she has a little bug.  Marvin was freaked but my calm demeanor reassured him so he went to school with a smile. 

So after her left I proceeded to have a nervous breakdown and cry.  I called the social worker and left a message and called the doctors office and got her in as soon as possible.  When Ms. J called she sounded stressed about it and I told her we would go to the doctor ASAP.  She asked me to call with updates.  I said I would.  She said it was probably nothing.  So I went to the doctor and after she took one look at Cary and read her records she said I needed to go to the pediatric ER due to her diabetes issues.  Say what? 

Now I remember reading that she had something called diabetes insipidus but her social worker blew it off when I asked about it saying that she had "outgrown it" and it wasn't anything big.  So stupid me I believed her and I even said something along the lines of that to my sister in law.  Whom I am sure thought I was crazy when it was brought up.  She does have a medical background.  But stupid me chose to listen to a social worker over a person with a medical degree.  Let's just say that that will NEVER happen again. 

So I went to the ER certain that my child was dying, I was a crappy mom who didn't deserve any children and I was probably going to get her taken away from me because I am a horrible parent who didn't deserve to live.  But I pulled it together because Cary senses stress like a radar and started screaming murder on the way down.  So I pulled over, held her, and told her that I loved her and that she is very sick and we needed to go to the nice ER people to give her an IV.  I am sure she thought I was some deranged fruit loop but she stopped crying blew me a happy raspberry (darn kid didn't even have the nerve to act sick anymore) and away we went.  Oh and I had called her worker and let her know.  All of a sudden Ms. J was taking this very seriously.  She asked about her needing insulin.  I said was she on it before?  Of course, she didn't know.  That was oh so helpful. 

So I made it to the ER, met Shannon and after poking my poor baby and shining blue lights on her to find a vein they found one.  After 5 painful jabs.  Once she started getting fluids she started pinking up some.  Then the questions started.  Then the ER team found out we had only had her 3 days.  They began offering congrats and we worked as a team answering what we could and getting Cary ready to be admitted.  At the time we believed that she would be overnight, we would get her fluids, and send her home.  Unfortunately, life is never that simple.  Cary's team began to come in.  When I say team I am not talking about the Green Bay Packers.  I am talking about a neurologist, feeding specialist, PCP, endocrinologist, and vision specialist.  They were briefed on our 3 day induction, offered congrats, and then looked grim. 

They said that they had lost track of Cary.  She had missed several critical doctors appointments.  What did we mean when we said she wasn't on any medications?  Do we know about this.  It was at this point that I realized that we were in some serious do do.  Unfortunately, we need to stabilize her.  You guys will have to stay in the PICU for several days.  Cary's team will come in one at a time so you don't feel so overwhelmed (like that was going to help insert eye roll).  We are going to get on the same page and work to get her back on maintenance.  Don't worry Mrs. Fields, don't worry.  Too late for that one. 

So I called the social worker.  By that time I was boiling mad.  Why didn't she let us know about these missed appointments?  I could have taken her in earlier.  Apparently, Ms. J had no clue either.  I had pretty much decided at this point that she is going to be as helpful as mammary glands on a bull and I would table this issue for now.  I had a sick baby and a husband who looked like he had been hit with a mack truck who could only say over and over that they lied to us.  They friggin lied to us.  I got to that problem later on but right now I crooned and stroked Cary.  I kissed her.  Then the shunt doctor from hell came in, banged on my poor baby's head like she was a ripe melon and tapped her shunt.  Good news mom!  Her cat scans came back great and she has nice clear fluids and her head looks better than ever.  Everyone is pleased about that.  Well whoopee do for that.  So after I once again calm down my kid and develop a healthy loathing for neurology we get a room in the PICU. 

Meanwhile, at the bat cave my wonderful in laws have picked Marvin up and brought him to the hospital.  I loved on him so long and hard.  I am sure he thought I was a fruit loop as well but I didn't care.  After you have been through all this you need to hold on to something "normal".  Marvin cried but went with grandma and paw paw.  I went back upstairs to be with baby.  We were given an extra "room" with a broken twin bed, shared nasty bathroom, and it is either freezing or roasting.  But it has been "home" and allows Shannon and I to get some rest in between being with our angel. 

Yesterday morning was when we found out about diabetes insipidus.  It has nothing to do with blood sugar and insulin.  What it is is a communication between the pituitary gland and the kidneys.  When Cary was born so premature her little brain hemorrhaged and damaged her pituitary gland.  So the gland is supposed to send a chemical to to the kidneys telling them to clean out the yucky sodium and waste and reabsorb the waters to function.  In a person with this type of diabetes what happens is that they pee the water and keep they yuckies in the kidneys and pee excessively.  They go in reverse.  So imagine Cary is an adult.  She would have to drink one gallon of water every hour on the hour to function at a normal level.  To live.  But life isn't like that.  If a normal person gets a stomach virus (which is what they determined that she has.  She has an elevated white cell count so she has a virus.  They also tapped her spine and are keeping an eye out for something more serious, but so far there doesn't seem to be anything worse) they can live 24-48 hours without fluid.  A baby with diabetes insipidus can dehydrate and die within a two hour period.  It was at that point Shannon and I came pretty much unglued.  My baby COULD HAVE DIED.  If I hadn't followed my gut we would be burying my child.  Shannon and I sat downstairs in the cafeteria and felt very helpless.  I cried and Shannon went numb inside. 

Then I realized something.  I AM A GOOD PARENT.  Not a perfect parent, but a pretty damn good one.  I CAN DO THIS.  My child has a disability, not a death sentence.  So I asked question, lots of them.  The nurses rallied around me and offered there support and encouragement.  Every time I felt myself flagging God sent in an angel disguised as a janitor, nurse, doctor, cafeteria worker, friend.  I found something I thought I had lost.  I found hope.  It has been that hope that has held me up.  Then Cary started to improve.  People listened to my concerns.  When my alarm bell went off I spoke up.  For better or for worse Cary is MY daughter. 

At the time of writing this a ton of doctors and nurses came in.  They were smiling.  At me.  At us.  We get to move out of the PICU and into the nursery wing.  If she continues to improve we will go home tomorrow afternoon.  There are still hurdles to jump over and I have a major bone to pick with DSS but I am stronger than this diagnosis.  I want Cary to be stronger than it too.  I don't want her to be some sort of sniveling coward.  I will raise a strong and resilient daughter just as I am tring to raise a strong a resilient son.  My children will NOT be defined by their conditions. 

Well I am at it I want a purple heart for surviving this:).  OK, that is probably pushing it.  But I would settle for a nice hot healthy meal with not a carb in sight and lots of fresh green veggies.  I am craving fish, peas, salad, chicken, pears, and oh all right a little tiny bit of chocolate cake (I'm a girl, sue me).  I am also craving time with Marvin.  I need my other baby.  And clean laundry.  Shannon has tried, bless his heart, but he is starting to bring me back weird outfit combos and I am going to start feeling like a circus freak if I don't get some decent clothes.  And don't get me started on the guy we share the bathroom with and how he locks me out when he isn't in there and grooms more than most girls I know while I am holding my bladder and thinking of how to cut off his hot water supply.  So I am hoping to go home for a few precious hours.  To sleep, eat, and love on my son.  To begin to try to live my new normal and even more chaotic life.  With joy, strength, and above all hope. 

Baby Eve

Alright, not the best post title.  But really what would you call it?  Last day of sleeping all night long?  Last day of having one child?  I just don't have a good name for it. 

But I do have something.  Hope.  Dreams.  Faith.  O.K.  I have lots of somethings.  Right now the house is very clean, the laundry has been cranking nonstop, Marvin is having a much needed nap, and I am taking a break.  Also a much needed thing:). 

We have been going crazy around here.  Between learning the proper way to deal with a pack and play (other than beating the tar out of it), scrambling to get items for the baby, and giving extra time and attention to Marvin as the full force of this is hitting him hard.  Things have been going at super sonic speed. 

I am ready though.  Both mentally and emotionally.  I am ready to face the storms of what lies ahead with courage and strength.  I am ready to ask for help when I need it.  I am ready to find humor in bad moments, savor good moments, and learn from the 8,000 mistakes I am sure to make along the way.  I am ready to admit that I am NOT wonder woman and cannot do it all perfectly.  I am ready to enjoy the little moments.  I am ready to fight for what this child may need and not back down.  I am ready to exchange my old dreams for new ones.  Not necessarily better or worse, just new.  I am ready to make new friends and keep in touch with old ones.  I am ready to find people who understand and support our family in healthy ways.  I am ready for bad moments, good ones, sad ones, and happy ones.  I know that I can learn and grow from them.  

So tomorrow at 11am we will welcome a new little one into the home.  But I have already welcomed her into my heart so this is just a formality.  I AM READY.

First Meeting

It has been really crazy busy around here.  Not unusual for us, but hings have really picked up.  I feel like my house has been hosed down in pepto.  Honestly, I have never seen so much pinky cuteness around here.  Don't get me wrong, I am thrilled.  It is just so weird after years of blue, green, and brown to have so much estrogen unleashed in a matter of a week!  I am girly myself, but this tops it all! 

So this means yes baby is coming home!! All those months of hair pulling, crazy insane moments.  Cary will arrive on this coming Tuesday at 11am.  Eastern Standard Time.  And yes, we are thrilled. 

But I really want to back up to our first meeting with our new little one.  This meeting was a lot less stressful than Marvin's meeting.  I really came prepared. I had extra tissue for tears, camera, water bottle (when I am really nervous I get extra thirsty), mints, you name it I probably had it in my purse. 

I was early at the DSS and spent about five minutes trying not to have a nervous breakdown.  I kept busy by watching parents scream at little kids and little kids climbing on chairs, hitting people, all the good stuff you find waiting at a DSS office.  I did find a nice quiet family to sit by.  The kids had hand held video games and were excited that they were getting into really high levels. 

Then Shannon and Ms. J. walked in.  Shannon was carrying a car seat.  In that car seat was a snoozing baby.  Apparently, he had gotten there at the same time.  We went upstairs to the cafeteria and Shannon plunked down a little pink bundle on the table.  (Sorry no pics.  I can't get them to upload.  I'm going to have to get Shannon to look at this!  It is really irking me!) 

Cary was placidly snoozing away.  I looked around for a foster mom and there was none in sight.  In answer to my questioning glance J quietly said that the foster mother refused to come.  In one way that was good.  I could just focus on loving up Cary and not have to worry about upsetting her.  In another way I felt really bad.  I wanted to hug her and thank her so much for taking such good care of Cary.  I also wanted to know her schedule, what she liked to play with, type of formula, that sort of thing.  But since that was not going to happen I just decided to focus on Cary. 

Which I did.  I scooped her right up out of her car seat while she just kept on sleeping.  I kissed her little head, and just commenced extreme love time.  After a while J scooted on out of there so Shannon and I could just spend time with her.  By then she had woken up and Shannon was holding her.  He resisted holding her claiming he didn't know how but I made him and he caught on pretty quick.  She really liked Shannon.  Then I claimed her again and J had come back. 

Cary really started coughing at that point.  She was turning purple and I know that that is not a good sign.  So we went down to J's office and Cary stopped coughing.  She became very busily employed on chewing through my shirt at that point.  J showed us Cary's drawer filled with over , wait for it, 5,000 pages of medical history.  Yup. 

That is a little scary.  But Cary was in the hospital from her birth till May.  So a lot of the pages are just what time she ate, that sort of thing.  But there are definite delays. 

Cary is just about one, but she is functioning at about the level of a two month old.  She also had trouble with her eyes.  She kept trying to look at us but they would slide down and she would flutter her lashes in annoyance (yes she was peeved) while she tried to look at me.  But after about the 15th person stopped in the office (there are not many babies in care so a baby is a very exciting thing) and told me how much better she was doing than her older brother (yes she has a six year old brother who has been adopted) and what a little fighter she is, I started feeling better. 

Then J's supervisor came in and told us about how he thought we were the perfect family.  He said so many nice things.  He thought that we would be strong advocates for Cary and that we were just the best fit.  I ended up feeling really good.  So did Shannon.  About then Shannon went back to work and J walked him out.  Cary and I were having a blast.  Then J came back and Cary decided that she needed to hurl.  On me.  Oh joy.  Let's just say it was gross and I was really thankful that I had a change of clothes in the car.  J and everyone else thought it was pretty funny. 

Then Cary had to go home.  I was sad that the meeting was over, but happy that I got to spend two hours with her.  Plus she was going to be coming to us in a week and we had a lot to do.  The first thing I did (after changing) was call my worker.  She invited me over to raid the closet at Children's.  The closet is a big room full of items for babies.  I was a little timid about taking stuff, but the women who worked there weren't.  I got some cute clothes, a little vibrator seat, and some rattles.  It was great and I was thankful. 

It was such an amazing day and now we are just counting down the hours until our angel comes home.  We are so blessed to get two very young children from foster care.  That is a miracle in itself.  Someone asked me if this was it the other day. I told them that every time I make plans they end up changing.  So I am just taking it one day at a time and enjoying the journey!

We Have a Meeting!!!

Yippee!!!! 

Tomorrow we will meet our daughter and hopefully discuss when she is coming home.  It was all crazy how it came about so let me back track a little bit. 

Friday I was getting ready to go get groceries and books when my phone caller ID flashed Ms. J's name.  I answered it and she asked if I had a little time.  I roll my eyes back further than I think I am capable of and put on a "happy" voice and say sure.  J is very to the point.  She said there has been a change in our case.  I start to panic.  I think, did mom and dad find Jesus and reform, is there a relative wanting Cary, or do you just hate us now? I was ready to throw up. Really. 

J said that our placement plans have altered slightly.  Gone is the need for 2-3 pre-placement visits.  She is looking for a "cleaner and quicker" transition.  The foster mother is having a hard time and it wouldn't be in the best interest of the child to drag it on.  She went on with a few other things that are too private to place here.  I agreed and then I shared another time and place that this happened. 

Walk back with me a few years and months to a cold December day.  I was so scared.  I was meeting my son for the very first time.  I hadn't slept the night before.  I was so full of joy and bounce I was driving everyone bonkers.  We got in Ms. T's car and pulled up to the L family's home.  I couldn't stop smiling.  The air was cold, clean and crisp.  I wore my lucky sweater and my boss had given me time off so I could savor this day.  We rang the bell and a woman opened it up.  Mrs. L was everything you could want in a foster parent.  Sweet, funny, easy, kind.  She was smiling but it didn't meet her eyes.  She was trying so hard to be happy, but it didn't take me long to figure out the facade.  I tried to play along, but I was uncomfortable.  We walked in and she offered us a drink.  I declined.  She showed us Marvin's stuff and proudly announced she'd weaned him from a bottle to a sippy cup.  She showed us all his toys and stuff.  She had gotten it from the goodwill and assured me that it was great stuff.  By then I felt this undercurrent of tension.  Ms. T felt it too and asked where her little man was. 

At that point Mr L. came in with Marvin.  I was over joyed.  My son, my baby, my boo-boo.  Mr. L took one look at me, burst into tears, and threw Marvin in my lap, and ran out of the room.  A part of my soul was broken.  To this day the whole thing makes me cry.  It was at that point I realized that for my dream to live other people's dreams had to die.  For my heart to be mended, other hearts had to break. 

The meeting got better.  Mr. L managed to pull it together and we all hugged and cried.  Then we made a date to bring Marvin home and it all went south again.  At that point Ms. T figured we'd better leave.  We did go.  I never forgot though. 

So after I shared highlights of Marvin's meeting I ended with saying that even though I would like it all to go smoothly and everyone hold hand and sing Kumbyah I realize that this is not reality.  Ms. J was silent for a moment and said that she wished it could be that way too but was glad that I had lived through this once and "got it". 

I honestly wish that I hadn't gone through it.  That it would have been a fully magical first meeting and everyone smiled and was happy.  That there would have been rainbow, chirping birds, and your various Disney creatures dancing.  But that is just not real life. 

So tomorrow I go meet our daughter for the first time.  I wish I could muster as much joy as I had for Marvin's meeting.  Don't get me wrong, I am still very excited.  I can't wait to hold Cary Lynn for the first time.  To look into her eyes.  To take pictures.  To think of all the things that we will do together.  Of all the pink that will invade our predominately male household. 

But for the expansion of our family to happen a woman must choose to let the little girl that she has cared for since a few months old go.  Another mother must have her parental rights terminated.  In life there is a mix of joy and sorrow.  The sorrow can weigh you down if you let it.  I will let it shape me into a more compassionate person, but I will not let it weigh me down.  I choose to live a life of joy, of hope, and of promise. 

Baby visit coming soon!

That's right.  We finally get to meet this little person.  It took some doing and a lot of pesting on my part! What?  You thought this was going to be easy?  I laugh, ha ha. 

The reality is it is the end of summer and their is some sort of weird migration pattern going on in Social worker land.  Our social worker is on her umpteenth vacation since she got hired.  I'm serious.  Every time we have something come up she goes away and sends a very nice e-mail along the lines of, "you can handle it just fine".  I'm not complaining, and she is right.  Having walked through the fire pits before more than qualifies us to handle pesky stuff. 

But I was really hoping to have more done by now.  Thanks to mass migration we are at least two weeks behind schedule.  The good news is that I finally pinned down Ms. J to a meet and greet.  It is for Wednesday next week.  Further down the line than I wanted, but she is holding down her work and her co worker's work while she is migrating.  Ms. J will call me tomorrow and pin down a time.  I will also ask if I can bring my camera to take some pics of the baby.  I would very much like to show off our new offspring.  But we may have to wait until the second meeting to do that.  It is all kind of weird and you never know the rules of the game until you are in the middle of it. 

I have been really busy around here.  Life continues 24/7 whether you want it to or not.  For awhile I was really dragging and down because things were going so painfully slow.  But then I figured I could mope and sulk because things were not going according to my neat packaged plan or I could get out there and enjoy something I haven't had in years.  A little me time.  So I will say taking a little time for me to get some things that I want to do done has been nice. 

Another good part is I am knocking out household projects like crazy.  You know how you make a list and then say I'll get to it whenever?  Well, my whenever is now.  It won't be long before I will be backlogged again so I am organizing, cleaning, and catching up on paperwork as fast as I can.

Marvin continues to thrive in school.  It has really surprised me.  He comes home eager to share his day, talks about his friends, and just seems to really love it.  I guess it shouldn't bother me and I should be more embracing of this new chapter in his life, but I am a die hard Montessori teacher and while his new school is nice and all, it just isn't very.......Montessori.  I am hoping I adjust to this fact as well as Marvin has. 

So that is where we are right now.  I hope to have some new baby pictures soon and even though it is very frustrating and wrath provoking this is all going to come together.  I just hope for sooner verses later!

Growing up and moving on

So it has been a really long and busy week.  We had another social worker visit and Marvin started kindergarten. 

I will have to say I had a very hard time with him going to public school.  I humped and grumbled.  Then I was reminded that it was important to have an open mind and not to pass judgement and to get off my high and mighty Montessori throne.  So I went to open house and saw the classroom, met Marvin's new teacher, and his classmates.  I ended up cautiously optimistic about it.  I really like Marvin's teacher.  She is really nice and was more than willing to answer all my questions. 

School started Wednesday.  Marvin couldn't wait to get on the bus.  We missed it on day one!  Shannon and the driver got their wires crossed and gave me the wrong time!  I was fried!! That was my Kodak moment people!!  But on day two I got my pic.  I'd post it, but blogger is giving me trouble so I will save it for another day.  Marvin never looked back.  Waaaahhhhhh!

He has taken to his new school like a duck to water.  He loves it.  He talks about what he is doing, is excited to eat in a cafeteria, and drags me out the door to the bus stop every morning.  No separation anxiety either.  At least for him.  I miss him during the day, but the change has been helping our at home relationship.  He no longer has to juggle mommy as a teacher and a parent.  So there are some good things happening. 

As for the baby we had another meeting with her social worker.  She came to the house to see if we had outlet covers in our outlets and that we didn't have a swimming pool.  I kid you not.  Really.  She also made sure we had a first aid kit and no fire arms around.  Plus she made Shannon take time off from work so he could be here for the full 15 minutes.  Gotta love DSS. 

On a good note, we are making some progress.  We hope to meet Cary Lynn very soon.  She is making developmental strides and we are slowly closer towards getting her home.  Her social worker needs us to meet her at least two times and then needs to come back to our house to make sure our outlets are still covered and that we haven't snuck in an Olympic sized pool.  I wish I was kidding, sadly, I'm not.  It is frustrating to wait, but we are hoping to have her moved in by the end of August beginning of Septemberish.  Part of the problem is that agencies can't share background checks and paperwork so we have to fill out stuff, get fingerprinted, and so forth all over again.  Cary's social worker promised to call on Monday (which means Tuesday in DSS land) to set up a time to see our baby.  Waiting stinks, but my friends assure me that it is building my character.  I won't say what I said about that.  Plus the baby get up during the night so I should probably enjoy sleeping all night long while I can=). 

So that is where we are right now!  I will keep everyone posted on developments.  Thanks for the prayers and support as our family transitions into a new season of our lives!

The 411 on what's happening

It has been a busy couple of weeks here as we prepare for our new addition to our family.  Life just picks up and is going at hyper speed.  So I am taking this post to answer some FAQs that Shannon and I have had. 

How did this happen?  I thought you said there were no babies and you were getting an older child. 

That is generally true.  There usually are no babies and toddlers.  Most infants and young toddlers are adopted through private agencies.  Children like Marvin and Harmani are once in a blue moon.  When a young child comes into the system they usually have special needs.  That is the case with both Marvin and Harmani. 

What's wrong with the baby? 

This is a tricky question.  Well not that tricky.  She was a preemie born at 28 weeks and was not eating.  She was being fed through a nasal tube.  Now she is taking a bottle and loves her feeding time.  She has some vision issues and may require glasses.  She requires some PT.  But she is making strides.  When we adopted Marvin he was done with all these things and requires maintenance.  With Harmani we will be coming in at the beginning instead of the end. 

How will you work and take care of the baby? 

Well that was the hard part.  When we were first told about the baby I started making plans for her care and looking into daycares that specialized in preemies and their needs.  Then I found out that there were a lot more things that needed to be done.  I wanted it all and started to realize that I couldn't have it all.  It was crushing.  I cried lots and lots and lots.  Shannon and I ran scenarios and looked at all options.  So after much thought, praying, and agony we decided that I would stay home.  It was a hard choice.  I love my job, my co-workers, and my boss.  They get me.  And they like me in spite of all the nutso things I do.  I love the children.  They bring me joy.  Plus I love to teach.  So after a lot of Kleenex and support I am starting to get cautiously excited about my new role. 

When are you bringing the baby home? 

The baby's social worker is on vacation this week but she is looking to expedite it and we are pushing through another mountain of paperwork.  Ms. J is looking for it to happen soon.  She said mid-August, but knowing how much of a roller coaster ride this has been I wouldn't be surprised if she wants to place next week.  But we are looking at a soft date of the 14th or 15th.   

When is the adoption finalized? 

Here again is a tricky question.  This is a legal risk adoption.  The parental rights have not been terminated.  We are going into this process labeled as a "foster parent with intent to adopt".  What that means is that even though we are the chosen ones at this point a bio family member may come out of the woodwork and want to adopt Harmani.  We don't anticipate this happening, but we are still taking a big risk.  But no pain, no gain.  And she is worth the risk. 

How do you say her name? 

Well, you change it so you can say it.  Haha.  We are changing it.  Her name is Cary Lynn.  Cary after my sister and Lynn is my middle name.  We have to retain her original name until the adoption is finalized and by then I hope to learn how to pronounce it.  I have heard her worker pronounce it several different ways so I am hoping to clear it up. 

Do you have a picture? 

Yes I do.  Mind you it is the same one as I posted on Facebook but still so dog gone cute!

Feel free to say Awwww.  We have a picture on the fridge and Marvin kisses it every day.  It is super cute. 

So what happens to Marvin? 

Well we decided to keep him as well.  Hahaha.  I know I know.  Well that was tough as well.  Not only was I stepping down but we had to make a choice for Marvin as well.  He will be going to a school up here.  Not my favorite choice but I have reserved the right to home school if things start going south.  People keep telling me he will be fine, but I have strong reservations about it.  He is going through some transitional upsets right now and wetting himself.  This is normal and I we are spending lots of time with him talking things out and encouraging him to express himself.  He and I are role playing about the new baby.  He is relieved to know that she doesn't want his tractors right now and that he doesn't have to share doggie (his lovie). 

That is where we are.  I am feeling more positive about things and my sense of peace is coming back.  Reading my last few posts I realize I was pretty negative.  I hate when I am not in control and that makes me really crabby.  But as I said, things are a little more smooth now and though I realize with DSS I will never be fully in control I am coming to understand the lay of the land and feel that I can adapt to the needs of those around me.  We had to make some pretty hard choices and I was pretty upset and scared.  But now that we have made them and we are marching forward I wonder what I was so upset and afraid.  I look on the face of my son and new daughter and I am ready to embrace the future.  No matter what comes.  

Social worker visit, round two

It was a crazy last few days.  I scrubbed, organized, cleaned, baked, and cleaned some more.  All in the name of the social worker home visit. 

I was a wreck this morning.  I was nervous, irritable, and well, just a mess in general.  I kind of felt like I was the only one on a sinking ship.  So to calm down I did some serious baking and last minute prep.  The worker, Ms. J. was supposed to show up at 11.  So imagine my surprise when the doorbell rings at 9:30.  Holy cow!  I just had put Marvin down in front of the TV with so I could clean up my mess.  So quick thinker that I am I shove it all in the dishwasher and slam it shut and pray that she doesn't ask to look inside.  I turn off the TV and tell Marvin that he has to finish his show later.  He was so not happy about that. 

Then I said another quick prayer, opened the door and let Ms. J in.  She was in a really good mood and loved her drive out here.  I showed her around and she really liked the house.  She loved my cookie monster blue kitchen as well.  She also really liked Marvin who totally took her over and demanded that she play with him, gave her a puppet show, showed her his handstands, and drew her a picture.  Thank heavens she likes kids. 

In between all of this I did have a chance to talk shop with her.  Believe it or not.  She is looking to place the baby in August and drumroll, I think she likes us!!!! Yay!!!!!!!   We are hoping to get "official" news by the end of this week.  Yay again!!!!!!!

But this is still a legal risk adoption and there is always the turn and shift of life.  I am hoping and praying for the news we are waiting for and so ready to get a nursery up and rocking!!  Things are finally starting to fall into place and I am so ready for it!! 

The social worker's coming!

Boy,  I should have social workers visit more often.  Just kidding, kind of.  I got up early and managed to organize a couple of closets, straighten the living room and clean it and now I am taking a much needed break before I clean and organize our bookcases in our room.  A bit obsessive you think?  Well, with social workers one never knows.  They could glance over your house with not much of a howdy do or they could open all your closets and drawers.  I have a feeling this worker is on of the latter.  So better to be safe than sorry. 

It has taken time to get to this point.  Lots of time.  I had already (and somewhat foolishly hoped) that we would be so much further along.  The worker had promised that she would know something two weeks ago.  So she still knows nothing.  Which is incredibly frustrating. 

But she did call and ask to come out to our home.  She called wanting an appointment last week while I was teaching camp.  It was a rather difficult camp so I would have happily skipped out on it, but figured that would not thrill my boss very much.  So being the good worker bee that I am I managed to get her to come out this week while I am between camps. 

I will also be flying solo this visit.  When I contacted our social worker she told me that she felt her presence was "unnecessary" and "that we would do just fine, baby proof the house and make it look handicap friendly".  Wait?  Say what???  You are like totally throwing me to the wolves here. Our old agency at least showed up for stuff.  Plus Shannon has to work and can't take time off for this.  So I am feeling slightly panicky.  But my mom insists that I can handle these kind of people so I am just going to do it.  I am a little tired of her dragging things out on us so I am pretty sure I will be fine once she gets here.  Thanks heavens Marvin will be around.  I am hoping he charms the socks off of her.  He is pretty personable and chatty so I think we will be O.K. 

We have been looking into stuff as well.  For those of you who are burning with curiosity I will say that Harmani was born very premature so most of her issues relate to that.  Her parents are addicted to heroin and show no ability or willingness to get clean.  She is also a fighter, like Marvin.  The only thing is that Marvin got PT, OT, and feeding lessons BEFORE we got him.  He was done with the hard work by 18 months.  We still do "maintenance" with him and as he ages his needs change.  We go with the flow. 

Harmani's needs are different.  She has just started these things.  She is learning how to eat, but is a very slow eater.  She needs OT and PT to work those muscles.  But her future progress is forecasted to be good.  They were also worried about her vision.  She went to the same eye doctor that Marvin goes to and they believe that she is tracking.  They say the same things, she is very little and her body needs to grow and develop.  So we would be walking right into the middle of it verses getting the finished product. 

My life is about to change.  It will become appointments, therapies, learning to become an expert on a new round of stuff.  I was hesitant to make a change because I had a good thing going and was in a pretty good place in my life.  But now that the change is coming and we have made new choices I am really excited to see what the future will unfold.  Everything has a purpose, and a season.  It is time for me to enter into this new season with joy and thanksgiving.  It won't always be rainbows, unicorns, and sunshine, but I will take it in stride and embrace the coming changes.  I refuse to live in the past and dwell on the choices I have made.  I will not live a life of regrets.  I will live a life that honors the choices I have made and the hope of an amazing future for myself and the child that I have and the children I have yet to fill our hearts and home with.