New week - new focus

I miss blogging....it is a way for me to write down what my heart and my head are saying to me.  Since joining FB, my blogging days are so scarce.  I tend to put down a few sentences on FB for that day when I do write my book. (BTW - I think it is getting closer....a lot of things have come together for me in the past 6 weeks, that I see the book forming in my mind finally ;).  There has been a lot going on the last week 6 weeks - but keeping some of it for my book and not on FB or blog.  Depending on my memory - Lord, help me.  I better start that book ASAP!  HA!

But, too much happened last week to sum up in just a few sentences on FB for me to remember.  Hence, I am busting out the blog today.

Last week - I had a lot of doctor's appointments for Anderson and Anna.  Consequently, it led to 2 new possible diagnoses for these two babies of ours.  First, I have to say - NOTHING is conclusive....we are "investigating" a few options.  Second, I will be happy to share once we know one way or the other what the conclusion is....I have always said this.  God has given us challenges and we will rise to them and I will share what we have learned and what we do with others.  I believe one of our goals is to share our journey with others to help them.  But, I like to keep them to myself until we know.

I was overwhelmed last week.  I could not think of adding 2 more things to our plate.  I took Anderson on Wednesday to a specialist in Baltimore.  It was heartbreaking to watch his anxiety just in the PARKING lot of the doc's office.  He was screaming, crying and verbally yelling, NO!  He did not want to go into the hospital.  Anderson kept signing "hurt".  I assured him we would just be talking with the doctor and nothing would hurt.  But, as I stood in the parking lot, negotiating and talking to Anderson - my heart was broke.  Broke that a sweet, 10 year old boy has been thru so much that he was scared to get out of the car with me.  Why does this have to be?  It is not fair!  Anderson finally went with me, we navigated the long halls and elevators to the department we needed.  Once we were in the office, Anderson starts yelling, crying and signing hurt again.  This is not just a pediatric office.  So, a room full of adults turn to Anderson and stare.  I am sweating at this point.  I am doing all I can to stop from shaking myself and busting into tears as well.  I sign us in at the desk and we wait.  Thankfully, they call us quickly, and the women at the desk realized what was going on without me speaking a word.  They quickly got us back to a room and to triage to check Anderson in somewhere a bit quieter.

The doc was waiting for us.  We had the 1st appointment of the day.  I had sent her Anderson's 500 page medical binder ahead of time.  This doc is AMAZING, (she is an endo - I had taken Anna to a few weeks ago - loved her and wanted her to see Anderson).  We talked a long time and Anderson played happily in the room.  When the doc told me she concurred with what my heart was saying, I was relieved someone was listening...but nervous because it means more testing for Anderson.  For the past 2 years, Anderson's had some funky labs, funky MRI, funky growth/weight issues.  Our INCREDIBLE/SUPPORTIVE and loving pediatrician concurred with me....but, have not had luck with an endo doc who would have the specialty to consider all of Anderson's medical dx to look at a big, big picture.  Anderson's neurosurgeon suggested a doc for me, but this one was at the University of Chicago (Since that is where the neurosurgeon practices).  I found this doc in Baltimore by chance - and I love her.  She is considering so many pieces of the puzzle - and most importantly - LISTENED.  So, for now, we have more tests and the doc wants to review some more records I had to send to her to see what all of this info says.  We think there will be a 6 hour test at the hospital in Anderson's future.  I should know by the end of the week.

Anna - I do not want to say much about this sweet pea.  Just that I think we might have found answers to another issue we have been seeing for a few years.  I took her to a doc on Thursday, who again, concurred with me and my thoughts.  This doc sent us to another specialist, we saw on Saturday.  Anna has 2 more appointments/evaluations with this specialist over the next few weeks.  I should know by the end of the month.

I sat and cried last week.  How can it be that we have 2 new things popping up.  HOW is it POSSIBLE?  I was kicking myself for scheduling all of these appointments at one time - I know better than that - I do not like when all of it comes raining down at 1 time.  But, on the other hand - now I am on the other side of it and can move forward. 

This week - I am choosing to stay positive and not cry.  This week - I am looking for all the goodness and hope instead.  This is what I have to do - last week was "one hour at a time" - this week is "one day at a time"!

My positives:

• my mommy gut - My mommy gut has been right SO MANY TIMES.   You have to listen to your heart and your head.  If it does not seem right, if something does not add up, you need to stop and listen.  I do not have a medical degree.  I am well aware of this - but, I have been living with medically challenged kids for 10 years.  I am learning trial by fire.  Doctors can not get over what I know and the lingo I can speak...you know why?  I have spent the last 10 years reading/studying.  I have added 2 and 2 together on many, many, many occasions and I have put the pieces together...and I continue to try and do this.  I will never stop.  If I was not making progress - I would stop and do yoga again.  But, for now - I am helping these sweet babies of mine, so I will continue to listen to my mommy gut and not give up!
• angel - I am thankful for the sweet woman in the waiting room at the hospital last week.  She saw me trying to help Anderson stay calm and quiet in the waiting room.  I do not know her.  This woman came up to me, complimented me and how I was handling Anderson.  She said she wanted me to know that she noticed and she told me she could not imagine how hard it is for me and that she thought Anderson was amazing and so was I.  Then, she hugged me.  Well, I was trying not to cry keeping Anderson quiet - when this angel came to me and spoke such kind words and hugged me - I cried.  I could not keep it in anymore.  I thanked her and told her it is exactly what I needed to hear this morning.  Little did this woman know that she refueled my jets to get thru the next few hours of the appointment.
• friends - I am so blessed by the most amazing friends.  One of my loving friends called me on Halloween.  She remembered I told her that even the simplest holidays can be so hard.  Yes, as a special needs parent - even Halloween can be hard.  It meant so much to me she remembered - and she picked up the phone to tell me to have a great night.  It made me cry too.  And my amazing friend that called me before and after Anderson's appointment wanting to listen to every detail of the appointment.  I am grateful that she will sit and just listen....and tell me to take 1 step at a time, to not get overwhelmed.  God has given me some beautiful women in my life that I know have my back no matter what!
• husband - As we celebrated our 17th wedding anniversary this weekend, I remember a promise we made to each other when Anderson was 9 months old and we realized something was not "right" with him - we read that 7 out of 10 special needs families end up in divorce.  We promised each other that night, sitting on our couch in California,  we would be on the other side of that statistic.  Charlie does so many little things and big things that add up to help me be a better me - and so I can help our little ones.  He is so supportive and helpful from the minute he wakes up until the minute he falls asleep.  
• diagnoses - I am stopping and reminding myself this week - I actually do not know ANYTHING conclusive about Anderson or Anna right now.  We are just doing more testing and evalutions on both of them.  And, I am remembering the good news - both things are treatable and workable and would help them.  Although, it is "more" - they are managable and there are actions to fix it.  Very grateful for this perspective as well!

As someone said to me last week - "this is just a blip in time" - seems like so much right now - but you will get on the other side of this <3