Lab day

So Friday I had to go and get labs taken. Let me just say this is one of my least favorite things to do.  Before I left the house my stomach was in knots and I just kept thinking  that maybe I should try it the way Emily gets her blood drawn.  She insists on them taking blood from her in her hand.  She says it doesnt hurt as bad as the arm.  I kept telling myself ~ I have to try it sometime and Friday was going to be the day!

I took Emily to school and drove over to the doctors office with Ben in tow.  We got into the room where they do the labs and Ben immediately starts to tear my purse apart and pulling EVERYTHING out!  As I was sitting there trying to pay attention to the girl with the needle so I could inform her I wanted to be more like my daughter and also trying to watch what Ben pulls out, before I knew it I hear the words "a little poke".  Seriously....it was in my arm.  Its not like it hurts but it really is so uncomfortable.  This time I really wanted to try and be like Emily and to really try and get it taken in the hand...I guess I will have to wait until next time.

I am amazed ~ even more ~ how far she has come.  I remember the first time in 2007 when she had to have labs it would literally take about 5 people to hold her down and that was a couple times a day.  Now, she is taking her lab sheet (what has circled what they need ) and is in the lab room before I am even leaving  the room we were in.  She is usually beating me getting her labs done before I am finished making the next appt.  

She has grown so much in the past 5 years.  This is her "normal" and its something that isnt a big deal really to anyone but its sad to me.  Sometimes I wish it was still like it was before where it took an army, almost, to hold her down ~ it would mean she wasnt used to it.  It would mean its not part of her normal life to have regular blood draws.  

I hope next time I have to have it done, I can remember to have it done from my hand so I can share something with her.  She is so amazing having to to this almost monthly .  She is my hero!

Do you have everything you need?

  Proverbs 2:6 
All wisdom comes from the Lord, and so do common sense and understanding

The other day I was watching Extreme Clutter on the OWN network, and I was watching this one particular because it was dealing with the lady who was a shopping addict.  She was buying all this stuff daily for her kids ~ stuff they didnt need.  By the looks of the house (especially what was put outside) she really fed her addiction.

I always thought that maybe I had an addiction to shopping and to some degree maybe I do.  I do tend to buy my kids "stuff" that they dont need, they play with it for a couple days and thats it.  I could have bought them a Happy Meal from McDonalds and they would have played with the toy that came from that much longer and got lunch out of it as well!

I do tend to just buy "stuff".  Stuff with no importance.  Its not helping my life only hindering it.  In the show as they started to purge away things, make quick decisions to get rid of items that they didnt need or that their kids didnt need, you could see this light begin to shine in their faces.   It got me thinking that this is going to be added to my list of goals this year ~ to start purging and stop buying!

But it got me thinking of something else ~ It made me start thinking of how we allow stress, maybe bitterness, to start building up in our hearts.  Do we allow material things to outweigh what we really need in our heart and our lives?  With Emily's situation (or when my son went to live with his dad), I could have easily built up bitterness towards God.  I could have allowed that to overwhelm me and to not allow  His love to hold me, to comfort me.  One song I found that i was perfect was by Kutless called "Everything I need".  It really speaks to me.  When I find I am so weak (at the store) and feel I am at such a low point with Emily or the fact we have to go to the doctors again or fighting with her about taking her medicine everyday ~ I feel so much better when I hear this.....Lord you are my strength when I am weak, You are the refuge I seek.....You are everything I need!

I urge you to take the time to do some "extreme" cleaning in your own heart.  If there is any bitterness that you are holding onto, when you dont feel you are strong enough to deal with your circumstances are ~ remember, HE IS EVERYTHING you will EVER need!  I hope you will listen to this song.   

My special friend

I have this special friend, she really is one in a million. I dont get to see her much, in fact its been a VERY long time (too long) since I have seen her ~ like years!   Let me introduce you to Dawn! 

 She is such an amazing person.  She is strong, inspiring, compassionate, ALWAYS there to talk (or vent), a woman of faith!  She has dealt with alot in her life ~ both her parents have passed away and she has lost two children.  Her strength  in time of sorrow is something we can all learn from.

She is one person, even though living in GA at the time, would call me almost nightly at the hospital when Emily was inpatient to see how things went that day, any new results or anything she could pray for.  We always planned that she would call me about 5 minutes before the hospital turned off the phones  so no incoming calls could go to the patients rooms.  It was wonderful because those were the times that I generally would break down if i wasnt talking to her.  Emily would be falling asleep, nurses were in just every few hours to take Emily's blood pressure and other stats and I would be alone.  Dawn made sure that she was always there for me.  

If we arent talking everyday we are then texting!  Its to the point when my cell phone makes a noise to alert me i have a new text, Emily will sit there and say "Dawn sent you a text" without even looking at my phone! 

She has allowed me to just cry on the phone with her when I needed too, vent about something, complain about something, or give some really good advice.  I know with her ~ I can be me.  I dont have to worry about what I may say...she accepts me for me.  I know I can be completely honest with her and thats the thing ~ she knows she can be honest with me.  I appreciate that!  

She knows she can come to me and vent, cry, complain and ask my opinion.  I know she will have my back just like I have hers.   She really is one in a million!

Because of the loss her and her husband and other kids have endured with losing two other children (Nathan and Haylee), she has gone on to write a book and she has her blog "You are not alone" that she writes for - for the online magazine The Wordsmith Journal (http://www.thewordsmithjournal.com/you-are-not-alone.html ).  The Lord has blessed her with an amazing talent for writing but also to allow her to be so raw about her experiences!  

She is a motivates and supports and I am blessed because she is not only my best friend but she is also my cousin!  I love you, my BFF - BBF!

This is a special gift that she did for me and something that is so special to me.  I hope you enjoy the video and appreciate her talent!

 

Do you remember your one special gift?

Do you remember a really special gift your received?  I was watching "The Biggest Loser" last night and I feel that I get inspired each time I see it!  Last night seemed to "hit" me though.  Here Mike was just a guy that seemed maybe misunderstood, wanting to spend some time  and get to know his half brother but also felt a little alone, abandoned.   Maybe his reasoning for coming on the show was to lose some weight but also get to know his brother and maybe in the meantime make some new friends but he was voted off last night.  He didnt seem to put in the work that was essential for losing alot of weight but also to persuade his other team mates to keep him on the ranch.  It was when they were voting him off did the audience get to see maybe a glimpse of the "real" him!  But what struck me first was he was given such an amazing gift (going to the ranch) and he wasted the gift ~ or so it seemed.  But then, right before he is to say good bye to everyone it seemed like we saw a different person.  It was another gift he was given ~ the knowledge to realize that not only physically is and will he be changing but mentally he has to change as well.  Isnt it awesome when we get such a gift that no one can take away from us?

In July of 1996, I received a "gift" that I thought I would never ever get ~ a positive pregnancy test.  This was something I wanted so desperately and it took 3 years to get!  Its all in HIS perfect timing and according to HIS perfect plan and will!  In March of 1997, Austin was born and I was simply amazed by the hand of God and making all my dreams come true the moment i saw him for the first time ~ I was a mom!

After a divorce, I thought I would never find a man that would go to church with me, love the Lord and also accept my son and myself ~ love us both and realize we were a package deal. In April 2002, I married the love of my life - another perfect gift from God as I had always had such a crush on him growing up!  After we got married, the talk of another child, one of our own, came up.  After having seen a doctor and her telling me that I had some type of ovulation disorder and the fact that I even became pregnant once was a miracle and for it to happen again...probably wouldn't happen.  If we had any chance of having a baby, I would have to go on fertility medication to help the process ~ again, the Lords hand was on the situation because after a month of being on the medication, I was pregnant!

March 2004, I received another incredible gift ~ Emily.  I knew it was simply amazing how the Lord has blessed us but I didnt know how blessed we were and what a precious gift she was (is)  until  Emily was almost 3 and became ill.  He has blessed our lives so much and is incredible to see His plans unfold.

In April 2008, I received another gift, another positive pregnancy test and something we hadnt planned on, at least at that particular time.  Isnt it crazy how when WE plan something it doesnt necessarily mean its what HE has planned! This was just 5 months after i was officially given a name for my "disorder" ~ PCOS.  In December 2008, my precious surprise gift from God was born, Benjamin!  He was born via emergency c-section and has kept me on my toes since!  

See these are all gifts that i feel HE has given me!  Some things I thought would never happen although they were the desires of my heart.  Thats what amazes me too is how HE knows the desires of our heart and its so awesome when our desires are part of HIS plan!

These are all wonderful gifts, but the best gift i have ever been given was my salvation!  Its like when Mike "got it" on the Biggest Loser last night about its not just changing the physical but the mind as well and no one can take that from him....that is how my salvation is to me.  I am a child of Gods!  He gave me the gift of eternal life when i was 5 right after our Christmas program with the help of a wonderful lady, Mrs. Snyder!  This is a gift that NO ONE can ever take away from me!  It changes not just the inside but the outside and every part of me!   Its the best gift that keeps giving and will NEVER be taken away!  

When I die, I will receive another incredible gift, the mansion that awaits me in Heaven, to walk the streets of gold with my Lord, and to be able to sing with the angles!

Whats your incredible gift?  I hope its something that you will keep and treasure forever and that no one can take it away...something you can enjoy for eternity!

It takes one time to start something new!

Going to the store is always difficult when I have Ben or Ben & Emily.  Yes, Ben runs around and I spend half the time chasing after him, but its also very hard for me to say "no" to him or them.  When it comes to Ben, he only wants match box cars so I  honestly think "its ONLY .99, whats the big deal"? It wont hurt.  But its not teaching him anything and considering he has probably close to a thousand cars between our house and Nana's house (no lie, either!) ~ he honestly doesnt need anymore ~ .99 or not!  I am learning that i NEED to say no!

With Emily, her things are more, obviously!  She will say "but its ONLY 5.00"!  Generally I give in.  I think with her its different....she is my only girl but also she has been "spoiled" for so long now that I dont know how to say "no" to her.  When she has been in the hospital she was getting "gifts" left and right for blood drawns, MRI's or someone came to visit and had a little something for her.  Alot of times too, my guilt plays (played) a role in things. My guilt that I couldnt "fix" her, my guilt that she is sick and there is nothing I can do about it.  My guilt of her having to take medication every day and not being able to change that.  My guilt for the way people look at her when she cant help the way she looks!  

Well, the other day Emily heard something new from me ~ "NO" and I meant it this time!  I was leaving to go to target and she begged to go.  I told her she could, however she wasnt getting anything this time.  This to her (Im guessing) meant if I beg long enough, she will cave!  Well, she threw a fit before we left and I told her, I was leaving and she could come, however I meant that she was getting nothing.  She decided to go.  As soon as we walked past the checkouts and came to the Justin Bieber trading cards, she immediately asked "Can I get one", my answer ~ NO! She said then can I get two? I said NO! She asked to go to the toys to look while I was getting the couple things I needed.  I went back to the toys to find her and she had something else with her "Can I get this" ~ NO!  Then she tried a different tactic....I REALLY like this! I would REALLY like it if I had this.  I said ~ NO! She stormed off to put it back.  When I informed her it was time to go, she said "You mean I dont get anything?" I said  ~ wait for it ~ NO!!  She ran ahead of me very upset and with her little attitude. 

We got in the car and her attitude changed!  We stopped to get DQ as a special treat (this was already in the plans ~ not as a "reward" for not buying her anything ~ although, I do like that idea of rewarding me with DQ if I say no to the kids!) and a 5.00 pizza for dinner.  After we were finished eating she said to me "Sorry, Mom, for being bad in the store" and gave me a hug.  It felt so good to finally NOT cave and buy something for her but to also hear her recognize it and have her apologize for her actions.

When telling Bryan this when we were getting ready for bed, we both laughed about it but to me, I felt like I really made some HUGE steps, not just for me but also for her!  I realized, I really can say NO to her and mean it!  I know, crazy, right?!  I think I have allowed my guilt for the situation she is in to really "run" my life and allowed it to really play a role on my emotions and my emotional spending,  that it felt good to stand up to it, to take charge and to realize that it really is possible.!  

Its a start!  It takes one time to start something new and I think I am starting something good...no matter how hard its going to be, no matter how emotional its going to make either of us..its beneficial to both of us!

I'm here - you can cry!

Many times when you have a child that is in and out of the hospital or has longer stays in the hospital, as we have experienced with Emily, sometimes you just feel alone.  Even though the hospital is filled with kids, parents, grandparents, nurses, doctors ~ you name it ~ the hospital is filled but you feel all alone.  I remember times when i would be almost jealous to some degree that Bryan got to go to work, live his normal life, live day-to-day while I stayed in the hospital.  Obviously he had to because we needed his income - that was a given.  Everyone seemed to live there life but i felt like time stood still.  I felt like i was frozen in the middle of the street and all around me people were moving lighting fast ~ time stands still when your in the hospital.  The only way i knew what day it was - was if the nurses remembered to write the day and date on the white board, otherwise, it was by how quiet it was in the hospital and/or what shows were on.   

Feeling so alone there are days when you feel like no one understands, no one gets what its like to live in the hospital day in and day out.  No one understands what its like to have to shower in a bathroom that millions of people have showered in. No one seems to know what it feels like to sit and eat lunch by yourself, while your daughter lays in her hospital bed on a vent. I would feel almost guilty for leaving her side for just 20 minutes to eat lunch.  Its the loneliest feeling.



Living in the hospital the staff now becomes your family and best friends.  I remember one nurse we had on the weekends back in 2007, she would come into Emily's room ~ "hide out" ~ and talk to me until nearly 3:00 am.  It was wonderful to become connected with someone in the situation we were in. She was so compassionate, so understanding and did whatever she could to make the situation a little more comfortable.  She went above and beyond what a nurses job entails!  To this day, we are still friends!   

Because I couldnt sit down and cook a meal ~ all our meals were at the hospital or Bryan may bring me something that i was craving for so long or we would make a trip to a near by restaurant if one of our parents could sit with Emily that long.  Bryan and I had an agreement though ~ in order to have some "normal" time together, we always allowed for the first 10 minutes of our conversation to focus on Emily.  A time for me to fill him in on something I either forgot to earlier in the day, new results that came in when he was on his way to the hospital or anything else.  After that, all conversations were about his day and what was going on with us...not Emily.  It helped alot.

It was always so hard when we would get some bad news or, like when she coded and went to ICU (in 2007) , I always felt i had to be strong for everyone else.  I didnt feel I could ever just break down and cry.  My time to cry was either at night when i was assured Emily was already asleep (so i wouldnt upset her) or I would have to go into the bathroom and cry.  I never wanted Emily to see me upset but sometimes the aloneness, news or just simply the situation really got to me.  Sometimes I wish so badly that someone would have just simply come to me, pulled me aside and said "I'm here, go ahead and cry".  It was a tough situation and I have grown since but it still doesnt mean there are times i still need to just cry.  I think when she was ICU especially, I needed someone to just come up and wrap their arms around me and let me have a moment to get it out. 

I have dealt with alot of guilt.  I know i could have never foreseen the future and where Emilys life has lead us down, but as her mother, I feel as though I should have protected her and that somehow I am to blame for this.  I mean, i was on fertility medication to get pregnant with her...did that do it?  I did start getting toxemia with her...did that do it?  So much guilt plays a role and that adds to the feelings of being alone in a situation that is out of my control.  I cry alot but feel i need to wear a mask.  A mask is put on to allow people to think things are ok, when deep down the weight of guilt overtakes sometimes.  When at the hospital the mask stays on until the lights are off at night and i can just let it out.  Its a hard situation to deal with  and harder when you feel you need to be strong for everyone else.

We all need that extra helping hand, that extra hug, or that moment to just have a good cry.  Next time you see someone in a  situation, not knowing what to say or what you should do ~ just go up to them and let them know that you are there. Its hard to ask for things, for help, for a hug so maybe just do it instead of waiting for them to ask.

Emily's Wish Trip

Disney Cruise ~ December 2011

It was pretty devastating having to cancel our Disney World trip twice and only to postpone it for a year.  We could only hope and pray that she would be well enough to travel at that time and not have anymore hospital stays.  When Emily had gotten out of ICU, Bryan went online and applied for a "wish" for Emily.  One of Bryan's co-workers has an adorable son that was granted a wish via The Rainbow Connection ~ its a Michigan based program that works just like "Make a Wish" but for Michigan residents only.  He suggested Bryan apply for Emily ~ it couldnt hurt, right?  Her doctor filled out all the information that was requested and soon we had a message on our answering machine that Emily was being granted a wish!  This was so overwhelming to us, especially everything that she has had to deal with!  As soon as we found out, we had started talking with Emily about the different options she had ~ anything from meeting the President of the US to a trip  to California to meet Justin Bieber (YES, she is a Bieber fan) or to take a trip anywhere she wanted to go ~ it was all her...all her decision!  It would be the biggest decision she would be allowed to make in this entire ordeal she has dealt with.  Yes, we tried to tell her what would probably be more beneficial to her (meeting someone probably wouldnt be as it would last a short time and she probably would be too nervous to talk).  She decided on a Disney Cruise!  Hey, Im in for that one!  So, this time we actually cancelled our Disney World trip but replaced it with her wish trip ~ WE WERE GOING ON A CRUISE!

Emily & Goofy at Castaway Cay in the Bahamas!

We went on the Disney Dream Cruise this past December (12/11)!  Let me just say, it was AMAZING!!! They outdid themselves by the attention they gave Emily (along with the other "wish" families that were there from "Make a Wish")!  It is a gift we will never forget and for just one week, we were able to be a "normal" family!  Yes, she still had to take her medicine twice a day, but we didnt take her blood pressure twice a day, it was a time to relax and that is exactly what we did!  I must say, this trip was probably the first time ~ in a long time ~ that I really sat down and didnt worry.  It was like we were a "normal" family on a trip.  Yes, Emily is fortunate enough to go to school like other kids and do things other kids do, but this week....i didnt have to wonder if the doctor was going to call, we had no doctor appts, this week she was a regular kid that wasnt "sick"!  The extra attention was great, but let me say ~ I would gladly pay back every dime if it meant Emily was well, no more medicine, no more doctor appts, just a regular kid!  I know that isnt going to happen so this gift that was given, hasnt been taken lightly and it is engraved in my heart forever!

Disney World ~ 12/11 on the tea cups after getting her hair done

Because of our trip, my feelings on wishes has changed.  I may step on some toes here so please forgive me if i offend anyone ~ that is NOT my intention.  Before my feelings were hey, free trip, why not!  But after the trip and knowing my child will deal with this for the rest of her life, I just feel wishes should be granted to kids that have a life-long illness. This is a battle Emily will have the rest of her life.  Because of all the chemo she has been on and will be on forever, she most likely will develop some form of cancer in life.  This terrifies me ~ something I worry about all the time!   Because of the chemo and her having to be on it forever (it keeps her system stable) she most likely will become infertile during puberty and with me having PCOS it doesnt help the situation.

Cruise 2011 ~ our last night..finally found a Cinderella dress on ebay!

When Emily was seeing her Hemoc doctors in 2007, I would be sitting in the waiting room seeing people from Make a Wish coming by to see these kids to do their applications.  I would sit there and think to myself, my child is sick why arent we being talked too? Then it hit me one day...my child will be better and if thats why they arent talking to me....I dont want them to talk to me.  Obviously, alot has happened to her since then and since our trip my feelings are different.   These trips, my opinion, should be given to kids that are battling a life long illness, who are terminal, who have a battle ahead of them like Emily.  It was such an amazing trip and for once i (as the mom) felt free of her disease....for just one week we were free!  If that is all we get, I will take it, hold onto the memories forever and keep pushing for one day when she can be free of medicine, doctor appts and just be "normal"!  For her though, this is normal...my precious baby girl, this is her normal.