My Family

My Family

Sunday, July 28, 2013

Insanity Week

I know that I am a very busy person.  I'm not half as busy as some of the special needs parents that I know, but I do manage to keep a very crazy schedule.  Some people do insanity training.  I do insanity appointments and scheduling.  Today is Sunday but I feel that I have lived a thousand weeks in one.  Here is a peek into my crazy life:

Monday:  I spent three hours on the phone.  I like talking to people, but these were not deep enjoyable conversations.  Cary needs new reflux meds and I spent thirty minutes arguing about getting them with no success.  Then we have to schedule Marvin for  evaluations because his school starts in about 2 1/2 weeks.  I finally got in touch with the right people, plead my case, and had my concerns validated, but it took time and effort.  Then I had to makes some calls because I am trying to surprise my husband with a ten year anniversary gift, but it will take time to put together.  Amber had to leave early to take her child to the doctor and my husband began working pretty much nonstop because his work had a crisis so I was pretty much on my own.  Not terrible, but I was ready for the day to be done.

Tuesday:  I decided we needed a normal day where we could do something fun and not have to worry about therapies and appointments.  I cancelled (gasp) PT and speech and we went to White Oak Lavender Farm.  It was a long trip, but to take Marvin, his friends, and Cary and enjoy the great outdoors was well worth it.  We started the day at 5am and it was past 10pm when all was said and done.

It was long, but well worth it.  I felt like we were all just normal doing normal things.  Plus I now have some pretty lavender around my home.  We want to go back again, but I will wait till the book fair reopens down there.

Wednesday:  Feeding clinic.  The one therapy I kept this week.  It takes me an hour and a half to drive there, listen to everything I do wrong, watch Cary and the therapist fight each other to see who wins this week, and then head home.  Cary clearly hates feeding and would rather live off of fairy dust, but she needs to eat so I go and watch how it is done, and try to use some of the techniques at home.  It is not all bad and I have learned alot, but the godlike attitude drives me bonkers.  I have learned to ignore it and deal.

Thursday:  We drop Marvin off at my wonderful in laws and I head with Cary to Kluge clinic in Charlottesville. We are trying to get Cary off of most of her Early Intervention and in to outbound therapy.  I look at it like this.  The outbound kids are getting steak and potatoes and Cary is getting cat food.  I have seen CP kids much worse off making so much more progress and all report using outbound as Early Intervention did not meet their child's needs.  It is great to be able to do things in your home environment, but if the child is not making progress and you feel that they are perfectly capable, then you need to start asking questions.  So after talking over things with a developmental pediatrician we are going to set Cary up for evals.  It was a two hour meeting, but much was accomplished so I feel pretty good.

Friday:  Cary got fitted for leg braces.  When we went to equipment clinic they were horrified to learn that my PT never said she needed them.  So we had the appointment.  I am so glad we did.  The woman who casted Cary said that in another month or two her feet would have locked in their position.  Then she never would have been able to stand.  She was enraged that I was not told my child needed these until about too late and then commented that she never was a big fan of Early Intervention. Let's just say it is a good thing that I will be getting Marvin to camp next week and not handling PT.  My aid will be in charge of that.  I am so angry at her right now.  She knew and because she doesn't go the extra effort because she wouldn't get paid for it, my child nearly lost the use of her feet and legs!!  I think it is best if I avoid her right now.

Then after that my husband calls.  He wanted to know if I wanted to take a mini vacation.  That night.  We would drive and get away and come back late Saturday.  I was about to say no it was too much and there was no way when my aid pipes up and says "We're heading home right now and I will have them packed and ready."  I asked her if she lost her mind and she told me that I needed this and I would thank her later.

So we came back, packed and were on the road to Lynchburg by 6.

Saturday:  After spending the night in a hotel with the kids and a defective pack and play we went to a farmer's market and craft fair.  Cary smiled and blew bubbles at everyone and I enjoyed home made local chocolate and coffee.  Then we went to Imagination Square.  It is a children's museum.  They graciously made some accommodations for Cary and we spent 4 hours playing, creating, and exploring.  IT has a giant four story slide and a zip line.  Marvin was in heaven.  Cary loved it too.

From blocks to bus, fine art to pirates, this museum had it all.  Marvin and I didn't want to leave but I promised we would go back.  We made a wrong turn some how on the way home and ended up in Appomattox.  So we went to a historical park and saw where Lee surrendered.  It was really cool, but Marvin and Cary were pretty done by then.  We got home late and pretty much went to bed.

Today:  We meet our family to celebrate my mother in law's birthday at the Olive Garden.  I am super excited to go out and give her the presents the kids made for her.  Plus my house looks like it blew up so it needs a little TLC today.

Next week is another busy week, but somehow I adjust and manage.  It is never dull and I probably wouldn't know what to do with myself if it was:).  Soon school will start, I will be training for Partners in Policy Making and Cary will hopefully be in mostly outbound therapies.  I am glad we had some time to get away and am super excited for the changes happening in our lives!

Friday, July 12, 2013

One Year Ago

It is hard to believe that life has moved so fast for me.  It has been a roller coaster ride.  Up, down, upside down.

One year ago my life as a teacher, mother of one little boy, and one rabbit would take a sharp turn.

One year ago we sat in a social worker's office and heard her talk about a little girl who had a lot of issues and needed mama and daddy.

One year ago I looked over a drawer of paper work, a brief list of medical terms I didn't understand, and I looked that social worker in the eye and said, "I understand she has a lot of problems, but I believe that we would like to adopt her."

One year ago I had to make a choice to leave a wonderful job and co-workers for an unknown future.  I didn't know the battles that lay ahead of me, or the fact that I possessed a courage and strength that I didn't know that I had in me to fight and advocate for a child that was so weak and frail  I was afraid to leave her out of my sight for more than a minute.

One year ago I told our teen social worker that she needed to fight for this child and step up to the plate to bring her home.

One year ago we saw a picture that looked a lot like this one:

I didn't fully understand all that I would be asked to give up, change, and learn.  I didn't know that I would live in doctor's offices and hospitals half as much as I have.  I didn't understand that I would spend less time on myself and that some times Marvin and Shannon would get short changed because I just didn't have enough left to give.

I also didn't know how strong I was, or how I could sit and scream at doctors when they just didn't want to hear what I had to say.  Or that I could be a fast learner and swallow medical encyclopedias before doctor's visits.  That I could spend hours researching a single topic just so I didn't look like some uneducated idiot.  Or that I could survive on three hours of sleep and lots of coffee.  Or that I could reach out to hurting parents just starting the same path I set foot on and offer support, encouragement, and most of all hope.

If I could have looked ahead and seen all of that drama, do you know what?  I would have done it all over again.(Well, I may not have yelled at ALL of the doctors, just a couple)  My daughter and son are the two most amazing people I know.  They have survived abuse and neglect and thrived.  We are not a perfect family and I am NOT a perfect mama.  Marvin will tell me that.  Frequently.  But my children have made me better and stronger.

A year ago a little girl named Harmani was introduced to our family.  She has gotten a new name and a second chance at life.  Like a phoenix reborn, she has shed her old broken feathers and has grown new, stronger wings.

I love you Cary Lynn Fields.  You are amazing and you have helped make me amazing as well.

Monday, July 1, 2013

Taking five

So it has been a little more than the usual craziness these past couple of weeks. 

Cary ended up with an infection in her skin.  Which ended us up here: 

Yup.  At casa de la mcv/vcu medical center.  This kind of looks worse than it actually was.  Even though Cary is fairly non-ambulatory (translation:  she doesn't move much) they still had to splint her hand to keep her from messing with the iv.  What ended up happening is she developed an abnormal interest in splints and used that arm to deck herself in the eye, hit mama, and poke the nice Scottish nurse in the nose.  Great. 

Anyway we came home, Cary was diagnosed with a staph/strep infection in her body, and given antibiotics that smelled and tasted like cat poop.  And yes they did flavor it.  So the cat poop had a nice hint of cherry.  The only good thing I can say about the med is that it cleared up Cary's constipation quite nicely. 

Then about a week after we were back again.  Shannon has something called syncopy.  It is a hereditary condition that causes him to pass out.  He decided my life was too dull and passed out in the  hallway.  What caused concern was that Shannon was having tightness in his chest and arm pains.  But the good news was that everything checked out O.K.  Shannon has been banned from power washing as that seemed to trigger the episode.  But it was a long day trying to get places, make sure the kids were O.K. and worrying about my husband. 

So I was getting pretty frazzled.  Seriously.  It is hard when everything hits you all at once.  But that is the way life works sometimes. 

So sometimes I've found I need to step back.  I need to get away from it all and just take a breath.  So I did just that.  This past Saturday I had a chance to kick back and relax.  I got together with a group of wonderful women.  We did some awesome stuff! 

The first thing we did was have a really great lunch.  Lots of fresh fruit, veggies, chicken salad, and strawberry shortcake.  Yum!  Then we did some really cool crafting.  We made books!  They contained advice for the mom.  Here is my book: 

I will say this is not the original book.  It started out as a nice simple little photo book that you keep in your purse.  You know the little plastic kinds.  But I am one of those crazy obsessed people.  You know the book about giving a mouse a cookie and the mouse goes off wanting all sorts of crazy things.  Well when I got home I noticed a little tear in the book.  I thought I will put the pictures and advice tabs in a better book that is a bit sturdier.  Then the book needed paper cut for it, the handwritten paper to be typed neatly and decorations inserted..... You get the idea.  The original book took about an hour to make.  The 5000 bionical version took about four hours. But I loved every minute of it.  The pictures and advice will be treasured for years to come. 

Then we went to the lavender farm nearby.  It is a beautiful place of healing.

Not to mention tons of, well, lavender.  I loved it.  It was very peaceful.  And I felt that I needed that peace very much.  They also have animals of all sorts, a massage tent, and every sort of lavender thing imaginable in the gift shop.  I picked some from the fields and have it drying in my home. 
They also had a labyrinth.   I took some time to walk it and pray. 
It was such a great place.  I plan on taking the children there soon.  I think there is something there for everyone. 

All in all the day was just what I needed.  I forget in the hustle and bustle to take time to do things for me.  I get worn down and grouchy when I don't.  So I am going to try a little harder to grab a few moments.  That is about all I get with two little ones anyway:). 

But those moments matter.  They are what keep me going and give me sunshine when life wants to throw rainstorms at me.  They bring me strength to get through the tough times with a smile.  It also gives me a chance to nurture friendships and explore new places.  One thing I am learning is that if I don't take time for myself for care and nurturing no one else will.  So I plan on making this more of a habit and less of making excuses why I can't.  I can and I will.  It's as simple as that.