Defiant Day...s

My sweet little angel has turned an ugly corner!!  He has had his first defiant day...I am in shock..I wonder if it's too late to get my money back...Yesterday was his 1 year photo session. I have had this booked for about 2months. I scheduled it around his meal time and nap time. I took special care to pick that tiny window when he would be neither sleepy nor hungry. Unfortunately he veered from routine!!! He changed the plan!!! George had taken his lunch break to come home so we could do these pictures. Everyone was showered and looking pretty.  Sam was inside in his jumperoo, playing, smiling. I thought, "we are going to get some good photos today." I should not have jinxed myself. As soon as we got outside we couldn't get Sam to look up or to smile or to cooperate in any shape,form, or fashion!!! My sweet angel's horns came out and he suddenly got fussy and tired. How dare he!!!! This was not his scheduled time to be tired!!! Needless to say I had to reschedule .....for November....I guess we will just pray that he feels like getting his picture made on this day. After the photographer left I thought that my little man would surely go down for a nap. This was not to be this case. He was up until later on that night. Rotten...Rotten...Rotten...
     Today my sweet little bundle of sunshine once again veered from routine by not taking a nap until later on this afternoon. I try on Wednesdays to make sure he has a nap before the physical therapist comes out, but that did not happen today so it was only a 30 minute session instead of the hour he usually gets...Another defiant day...Of course as soon as she left he fell out right when he was supposed to be eating. He is throwing my schedule off completely. Does he not realize this? So as I am typing this I hear him waking up. I had him sleeping for another 30 minutes, but obviously that will not be happening!!! I am going to have to go have a talk with him and straighten this matter out... I let you know how it goes.

And Sarah Laughed.....

I am on a mission. I have decided to read the entire bible cover to cover...now before you applaud me and give me some, " You go girls". hear me out. It seems like lately I have just had some questions that I desperately need answers to and I have been getting frustrated because God seems silent lately, but then it hit me...He left me His word and it supposedly has everything I need so .......I am on a mission to get my questions answered and so far so good...I am now in the middle of Genesis learning all about Abraham and his whole family...I did the whole creation bit and the Adam and Eve stuff.....then moved right on into the Noah bit with the Great Flood and all. I never really noticed how much patience God had over the years with people. It's true that he hates sin and he does punish for sure, but not before he gives us multiple chances to change.
       I was reading in Genesis 18 and the story of Abraham and Sarah caught my eye. You see I am notorious for asking God for something and then getting impatient and trying to go ahead and impose my will onto the situation instead of waiting for God's perfect will. When will I learn? His will always wins out in the end, but I usually have some unnecessary battle scars and frustrations.  Sarah was the same way, even though she was told by God that her old behind was going to bare a child, she didn't think it was actually going to come from her. She went ahead and gave her servant Hagar the go ahead to get it on with Abraham and ...BOOM...along came Ishmael and that was a whole different set of troubles..The thing is when God told her this....she laughed.....she couldn't believe that He could bless a 99yr old woman with a child and frankly she wasn't alone...know what I mean...I can so relate because as the words are leaving my mouth when I'm asking God for something I am totally not believing it can be done. God speaks and throws out these pearls....Gen 18:14 IS ANYTHING TOO HARD FOR THE LORD?..I think this is rhetorical...because clearly He's making a statement....I don't know about anybody else but I totally needed that reminder. I am so limited in my finite thinking, but I serve an infinite God....Just remember that the next you are tempted to laugh at something you've asked God for because you think that it's impossible....look at Sarah...Granny even ended up breast feeding Isaac if you dare to imagine that!!!!! You go girl......

From where I'm standing

I can't believe it has been a whole year since my little tornado came into the world. He is still giving us a run for our money and putting many gray hairs...on my husband's head (not mine).  He is 17lbs 10oz and almost 29inches long. He is saying ma ma and da da and making the b sounds and just babbling up a storm. He is stubborn and oppinionated...go figure..and is trying his hardest to crawl. He is super curious and tries to grab anything that gets within his clutches especially the dog!!! He makes the best faces and has the sweetest laugh I have ever heard...it's hard to believe that this is the same baby that lay almost lifeless in the CICU a year ago. The same baby that we prayed over day and night not knowing if he was going to make it to the next day. I spent most of those early days crying to God and then yelling at Him...but here we are 1 year later. I still have my moments..especially when I'm tired..when I wonder about the future and I get overwhelmed by the present and I can't see past my tears, but I just keep believing that God is...and He has a plan for Samuel.....I mean, after all, I had 2 prior miscarriages before Sam and he's the one that hung in there so he is definitely supposed to be here and I don't know what the next day will bring let alone the next year...but I am hoping it will be an awesome one...Right now it looks pretty good from where I'm standing.

Joy Comes in The Mourning

I'm going to tell you a story that I've only told one other person. Let me start by telling you a little bit about myself first so you might understand why I've been reluctant to share this.  I am not the kind of person that believes in ghosts, I don't think that there are ufo's , and I believe if you're hearing voices you might want to check yourself in somewhere with padded walls. I also tend to roll my eyes when people start there sentence with, " God was talking to me today." ....I know....but  that's just how I am...with so many "false prophets" out there...I tend to be cautious with a side of suspicion...I am a "doubting Thomas" I probably would have asked Jesus to show the scars as well....I'm not proud of it, but that's the truth..and I'm sure like Peter I might have been inclined to deny Christ out of fear ...again, not proud of it...just saying... I just want to paint you a clear picture before I tell you a story that, even today, makes me slightly uncomfortable but here it goes....
       When Samuel was born, as I have metioned before, he spent the 1st month of his life at Sibley heart Center. There are 2 main units that Sibley uses for their cardiac patients. One is the CICU or the Cardiac Intensive Care Unit and the Step Down. The latter of the 2 is used to prepare you to go home, so when you get sent to the Step Down it's an exciting day because, unlike the CICU, you can stay with your child. Samuel ended up in the CICU 3 or 4 different times...my memory is a little off...anyway my point is there were sometimes throughout that month where he took 1 step forward and 2 steps back. It was an emotional rollercoaster. When he was in the CICU our days were as follows....I would get up in the morning and call his nurse and check in after rounds, then I would usually throw on some clothes and my ever trusty hat and head out...George would come up after work and we would stay until about 11pm and head home and this would get repeated.
        On this particular morning Samuel was back in the CICU for the 3rd or 4th time after having had his G-tube surgery. They had just extabated(taken the breathing tube out) him the night before and he was on oxygen and they were weaning him off. I had not slept well the night before and was just about to call when the phone rang at 6am. It was his nurse and she said, "Mrs Van Winkle we have had a little set back with Sam and have had to put him on some high flow oxygen because he's not wanting to breathe like he needs to. I then hung up the phone and felt my heart sink into my stomach and I just began to sob. My husband woke up and I told him what happened and I'm sure that at that moment he felt completely helpless.. I felt so broken and so kicked in the gut. I wondered if God was even listening to me..After George headed to work, I dragged myself out of bed and began my normal routine of just throwing something on and heading out. As I started to turn the knob on the bedroom door I heard a voice as clear as if someone was standing in front of me...The voice said, " Take a shower."....Kid you not....I stood there in silence and then I said...excuse me?? again ....,"Take a shower.." Now you have to know that there have been very few times in my life where I have immediately done what I believe to be God asking me to do. Usually He allows me to fall repeatedly before I actually ...eventually do what he asked me in the first place, but on this particular day..at this particular moment , I acted without hesitation and I got in the shower... I was, however, wondering...much like Gideon...what was the point? As I was taking a shower I heard the voice again, " I want you to got to the hospital without looking defeated!!!!!now get dressed.....I couldn't believe it..but I knew that this was God and this was what I needed to do on this particular day at this particular moment I was like Peter on the water, but I didn't look away from God..I fixed my gaze and moved forward...I pulled out all the stops..I fixed my hair and did my make-up and put on some nice jeans and I even broke out my diamond!!!! Oh yes...I left the ball cap in the closet and headed out...I felt like Gideon in the wine barrel...when God said, "Come out you great and mighty warrior." Today...I was a warrior and with head held high, hair fixed, diamond in place I made my way to the hospital....I got a phone call on the way  there from the nurse in the CICU..she said, Mrs Van Winkle we are transfering Sam to the Step-down unit...I said, " Can he go on high flow oxygen?" She said, "Mrs Van Winkle...he's not on oxygen anymore..he turned around...he started breathing normally on his own!!!! I hung up the phone and began to cry....It was a simple act of obedience and I didn't understand why ...but God knew the whole time.....Is 65:24 (Before they call I will answer while they are still speaking I will hear)
      Sam is celebrating his 1st birthday tomorrow Sept 11th ...I am so amazed how far he has come, but I know without any doubt that God has been with him the whole journey and will continue to be no matter what lies ahead...I will fix my gaze and move forward.....

You were wanted and You are loved

Growing up we didn't always have what we wanted but we always had what we needed. Of course I will always hold a grudge for not being allowed to have "hammer" pants...but let's move on. My parents both worked hard and did the best they could with what they had. The one thing that was never in question was whether or not I was loved not just because I was told on a daily basis, but by my parents actions. They raised us is a loving, Christian home. My parents were not perfect by any stretch of the imagination, but who is...They were so uncool to me back then..especially with all the questioning they did...where are you going? who is going to be there? When will you be back? Is there a parent in charge? followed by ..., " Leave us a number where we can reach you." Now, looking back, I realized they cared enough to ask the right questions. They new who our friends were and they had  a list of numbers...They watched my softball games and came to my band concerts and musicals. They helped with homework when they could. There were the late night basketball games with my dad and the walks in the woods. The car trips to Florida and the camp outs on the trampoline....and of course my favorite, opening the door and sitting in front of the open screen to watch it rain. ...I understand today that all of these things are how my parents showed their love for us...in word and deed....
          I wanted Sam so much even knowing what the outcome could be...we both wanted him..and loved him before we even met him and knowing him now that love just continues to grow....If he knows anything in this world I want him to know that we wanted him and he is loved...Hopefully we will lead by example, but it will not be perfect...I do promise to love him perfectly until the day I leave this world.....Jer 31:3 says that God loves us with an everlasting love.....that is hard to believe, but true...I can't wait to sit and watch the rain with Sam, to go on camping trips, to watch his 1st ball game and to be on the side lines cheering him on...I want him to be all that he can be and never let anything or anyone hold him back and I want him to always remember that he was wanted and he is loved.

Like It Was Yesterday

I have to admit that I don't have the best memory. Never have, now my nephew, Cayden, he doesn't forget a thing...my poor sister, but me...I forget all the time. I think besides God's many other awesome attributes that he also has a wonderful since of humor which is why when it came to my pregnancy and Sam's birth I won't ever forget!!! I can remember like it was yesterday. This time last month I remember getting ready to go to work, big as a house , and miserable...and I have to say I was "that" chic....the angry pregnant woman and my co-workers bore the brunt of it!!!! If God had given me the ability to breath fire, there would be a lot less of my co-workers around today....anyhoo...I just remember it was about this time that the panic attacks started. I would wake up feeling like I was going to sufficate and telling George that we had to get this baby out now!!!! My poor husband...I was also going to the perinatologist every other week and the ob for a stress test. We were also getting the nursery ready and at night I would read to Sam and pray for him. I remembering asking God every night to make him into the man of God that he wants him to be and to heal his heart and please make him healthy and normal...of course I have since learned that "normal" is highly overrated and apparently subjective....who knew?? anyhoo...I couldn't wait until he got here. I was filled with excitement, nervousness, worry, ..I was scared and not sure what we were facing but here we are almost 1 year later.....God has been good to us that's not to say that I haven't yelled at God along the way,  and I haven't had the most faith, but it's all good...and in a little over a week we will be celebrating Sam's 1st birthday.....he's so awesome and I will never ever forget.....

The Things We Pass On

I think that one of the first things that most parents do when they look at their child, after checking for all the digits, is to decide who gave what...nose,eyes,hair color, ears, toes, ect.....For instance, with Sam, he got my nose for sure and George's everything else... But today at the eye Doctor I discovered I had passed on one other thing to my son. Apparently I have given him a wonky eye that even I didn't know I had. Don't ask me the name because I forgot it as soon as the Dr. said it, but it's apparently like being left handed in the eye world. It's a condition where the optical portion refracts light on the opposite side that it's supposed to and gives the illusion that the eye is slightly off center. ..WHO KNEW....go figure..of all things to pass down. I just started laughing because there are so many things that you can pass on and not even know it and I am most certainly glad that it was nothing serious. This got me thinking....not just about the physical things that we pass on to our children but everything..What is our "mantle" that we will pass to Sam....I hope that we pass on strong character and morals..fierce independence...strong will...fighting spirit...a deep love for God and family..and then I thought ...what will he pass on to us...hopefully he will forgive me for the wonky eye...I might not even tell him....he'll never know...hey I didn't until today. We have such an awesome responsiblilty as parents to teach our children to be better than we are..I don't care if he's rich or handsome...although thank God he is....but those things aren't what matter most to me...What matters most is that he loves God with all he has and that he lives his life how God wants him to...that he is kind, but doesn't let people run him over...a leader, but not so much that he becomes arrogant or thinks he knows it all.. I just want him to be a good man...a Godly man...a light in the darkness...I think that he's well on his way.

the what if monster

I was laying in bed the other night trying to shut my brain off. I was thinking about what it would be like if I won the lottery. I would be debt free and I would probably live on a farm, but without all the animals just the land and I could finally have my wrap around porch....good times...and then my mind drifted to where would I move ...what county and would they have a good school system and would I be able to maintstream Sam and Oh my gosh he's almost 1 and only knows a few words...I mean he babbles and seems to understand me but what will he be able to comprehend and will other kids be mean... I mean..of course they will kids are mean, but some kids are nice...I hope he has some really good friends..will he have to have any more surgery..will he ever get this G-tube out ...I hope he can eventually eat more by mouth....HELP!!!!!!!! I'm doing it again. I'm thinking not just about tomorrow, but the day after that and the year after that and so forth and so on. It's a never ending cycle. I can't sleep and then my chest starts to hurt and I can feel the acid start to rise in my throat. God tells me not to worry about tomorrow, but that's easy for Him to say..He knows what's going to happen. Some days are better than others ,but for the most part it takes work not worry about the future. I do feel there is a difference in being prepared for the future and just worrying about it. God never gives us more than we can handle that's true, but I am a worry wart. I bought all these educational books and I read them to Sam and we are trying to teach him sign language and we are trying to get him to crawl..Sometimes I have to stop myself and just enjoy him..he's so awesome and funny and stubborn. He is starting to have his own very distinct personality and I am sure that he will learn all he needs to in his own time....So for now I will try not to worry so much about the future and just try to enjoy the present...Wish me luck.

Letting Go

I have always been ,for the most part, a pretty laid back person...never one to "make plans"..not really much of an "organizer"... I have also been know for my daredevil mentality...to some degree...I can remember as a kid..just wanting to grow up. I couldn't wait until I could ride a bike by myself or spend the night away from home or drive...that last one has given my mom all of her gray hair and has taken the hair right off my dad!!!! Fortunately my driving has greatly improved... I have had my share of scrapes and bruises and even stitches, thankfully no broken bones, that I know of.....I'm sure that I have caused my parents some sleepless nights and lots of worry.....
       I always thought that when I became a parent that I would be pretty mellow...I wouldn't get stressed out over the little things...like deciding whether or not to breast feed...if it happened so be it if not so be it....I would not get caught up in any "fads" or read any child rearing books....that sort of thing....just go with the flow....That was the plan, but as we all know plans change...There is a saying out there that goes..If you want to make God laugh then tell Him your plans.
       From the minute Sam came into the world I have been in a constant state of worry..They took my baby from me as soon as he was born and I saw him in an incubator right before they transported him to Sibley. The next time I saw him was in the CICU with wires and tubes everywhere. I spent my days and nights with him...sitting by his bed...praying over him...crying...wondering what his future would be....I was taught how to care for him . I went to all the classes and learned that he was at a high risk for Sudden Infant Death Syndrome and it was right at the start of RSV and flu season. I was terrorfied. We brought him and he was so fragile. I had hand sanitizer everywhere and I would stay up at night just to watch his chest rise and fall. Taking him to the Dr appts brought a whole new set of worries...I became a different person..suddenly organized and a huge germaphobe..I wanted to put him in a big bubble ...The first time that I had to leave him with my husband was a nightmare for me..even though he's Sam's dad I can't say that I trusted him, but he did fine and they got into their own rhythm.
       Now months after heart surgery Sam is doing so well...He has become a very energetic,curious, strong willed little boy, but I have trouble letting go...I have trouble letting him explore on his own...I am always waiting from the other shoe to drop...I also still have trust issues when it comes to letting his daddy watch him on the weekends...I don't think anyone can take care of him as well as me, but that's not true...it may not be the same..but his daddy loves him just as much as me and had his own way of doing things....Today, for instance, George took Sam out in the jogging stroller for the 1st time...I was so nervous and a little sick to my stomach...I am so afaid that something is going to happen...I live in fear that at any moment God will take him from me, but that's no way to live...not for me or for Sam..and he needs his father as well as his mother. There are certain things that he can't learn or get from me. There are things that only his father can teach him. George said that he kicked his feet and squeeled the whole time as George was running and pushing him in the stroller...I can just see him with the wind in his face and all the trees wizzing by....I have to let go...I never thought that it would be this hard..amost painful...and it probably won't get any easier, but Jer 29:11 is what I try to hold onto for Sam....God has great plans for his life...and  we might have some scrapes and bruises along the way, but it's all good....I will try not to hold on too tightly.
      

Unlikely Heroes

I have had a few heroes over the course of my lifetime. I can remember my first. He was my grandpa Anderson. He was awesome. I used to think that he could do anything and I never ever thought that he was old...He used to take me on bike rides and he let me help him in the garden and he even showed me how to climb up the fig tree in the back yard. I can remember being just big enough to see over the window in the car when he would let me ride with him to the store. I loved that man. Samuel's middle name is in honor of him, but as I got older I realized as awesome as he was he was just a man and he wasn't invincible ...he passed away when I was 16. Not long after that I discovered the comedy of Gilda Radner and Lucille Ball and Carol Burnett...and they became my heroes for a time...Over the years my heroes have changed depending on what was going on in my life at the time. My dad, of course, will always be my hero...I can see my mom rolling her eyes as she reads this, but because of my relationship to my earthly father I have a good one with my heavenly father and that's why he's my hero....My sister is another one of my most recent heroes.. She is a labor and delivery nurse and a really great one at that. She was with me from beginning to end when I delivered Samuel...She was my cheerleader, coach, nurse , and sister all rolled into one. She is the kind of nurse that will look out for her patients no matter what even if that means standing up to an arrogant, know-it-all Dr...the kind of nurse who will stay with a patient..off the clock..if they ask her...and  she's been a shoulder to cry on for some as well....I have had the great honor over the course of the last 11months to meet some very unlikely heroes......My friend, Heather, for one...is one of my heroes...she keeps going forward and opening new doors when the old ones have been slammed in her face....Ellen M. whose son is fighting for his life...and she celebrates each day to the fullest..never taking anything for granted...the nurses in the CICU and Step down at Sibley Heart center are definitely my heroes...they took care of me as well as Samuel.....My friends Gabby and Kathy who are my go to gals when I need prayer and I can't do it myself...super heroes....For all the families and children fighting everyday just to live another one..my heroes...It's funny how heroes change. What I consider heroic today was not at all what I would have considered heroic back in the day......

        I have been reflecting alot over the last few weeks...mainly because Sam is about to turn 1 this Septemeber...What a year it has been.  If I added up everything that I have learned I could probably wallpaper China...just saying..it's been an up and down road, I would like to say that I wouldn't have changed a thing, but gimme a break!!!!! that's ridiculous...of course I would have chaged some stuff....however, I adore my son and the experiences we have had together over the months have changed who I am and how I view things and how I respond to certain situations. I could still be better...or could I ?? anyhoo....he's awesome and as he was getting his 1st haircut yesterday I thought, " we've come a long way".......

Bad Thoughts and Accountability

I have to admit something and I know that most of you will be shocked. I'm not perfect. I'm going to give you a minute to take that in.....I know...shocking....For this very reason I have a few people that I call that keep me in check. Now having said that I would also like to say that I love my son...I know that he is a gift from God and I wouldn't trade him for all the starbucks coffee in the world and those who know me know how much I love starbucks coffee...By now you are probably wondering where I'm going with all this...Well, here it is...I feel incredibly guilty for some not so nice thoughts I've had ......I get slightly jealous when I hear of people having healthy, normal babies...this includes friends, random people, people at work...I know...you're probably gasping right now, but let me just say that no one is more disappointed in myself than me...I would never wish anything but a healthy normal baby on anyone...but sometimes it's hard to muster up that happiness...I don't want to sell my son short...but I do often wonder what that experience would be like...To have an uncomplicated pregnancy...to be able to breastfeed my baby...To have my baby at the top of all charts..anyhoo....I think that it's important to keep myself accountable so that I don't lose perspective..I do however, get so angry when I come across an abuse case..I think, "This is what they've done with the healthy child that they've been given?.....I do look forward to watching Sam grow up and I can't wait to see what God has planned for him...so forgive my imperfectness...I'm sure that it won't be the last time.

it's the little things

Yesterday was an incredible milestone for Sam and I. We went walking on the greenway together, well he rode in his stroller and I walked. This may not seem like much , but to us it was huge!!!!! He was chilled out with his hands behind his head and one foot up over the tray of the stroller while I pushed him ever the proud mommy. People walked passed us and grinned or said, " oh how cute." I felt like a normal parent. How I had longed for this moment when I could just simply take my baby on a walk like most parents. No oxygen, No feeding pump, No monitor, Just us. We were on lock down for so long and I used to go into Babies R Us and look at all the other mothers with there little babies and  I wished that I could show mine off as well. As I walked with him yesterday and we took in all the sights, I just thanked God that we were there and I couldn't have imagined this 10months ago or even 3. That is another thing Sam has taught me...to enjoy the little things...

Good People, Bad Things

I often wonder what the garden of Eden must have been like. A perfect world created for God's people. Every need met. No wants. No guilt. No shame. Nothing but pure innocence. Every time I think about this world it makes me want to punch Eve square in the face. Adam, of course, is not without blame...I want to say, "What's up man...a peach wasn't good enough..or some grapes...it's Eden for crying out loud..there's probably a tree with mixed fruit up in here !!!!!! but alas...I stopped trying to work all the what ifs and why nots  out in my finite mind. How terribly disappointed God must have been..He asked only one thing, just one...
       God still doesn't ask much of me today..but I, like Adam and Eve, sometimes can't obey. Once sin entered that perfect world and the world became an imperfect place...well....bad things happen to good people...the good news is  that God can always use the bad situations to his glory by how we choose to respond...I admit that I am not the best at this. I am a tad bit stubborn and I have a little bit of an Irish temper. I'm learning. I know that I always will look to see how someone responds in any given situation so that I might draw some kind of hope from them or some  bit of encouragement. I'm in pediatric healthcare so I've seen my fair share of craptastic things happen to really good people, but in the mist of some very dark moments I've seen pure light because of how these people have chosen to respond.
        I have been able to meet some amazing families due to being in the hospital with Samuel. I know of one family right now who was sent home and told that there is nothing more that can be done for their child, but still they thank God every day for the time that they have been given and of course they are praying for his healing. I have another friend who adopted a sweet little girl  4 months older than Samuel also with Down Syndrome and a heart defect. This family is waiting to hear news on whether or not their daughter's heart can be fixed. They adopted this sweet baby at 4 days of age, knowing she had all these issues, and they love her unconditionally just as she is and they continue to hope and pray. There are so many of these stories in the world of bad things happening to good people....I really have learned over the course of this last year that it's not what happens in my life that matters, it's how I choose to respond to it...God promised that He would never leave me nor forsake me and He has kept that promise through everything.

Oh baby einstein, you evil genious!!

I had only hear about these baby einstein videos in hushed tones from other parents. It is like some secret society or something. I could not hold my curiousity any longer. When Sam was about 3months old I purchased 2 of these dvd's for the 1st time and I became a believer.  My son was fussy at meal times and I decided to try and sooth him with a dvd. I put on baby bach and it was like magic...he was quiet and riveted...I was puzzled...until I too fell victim to the melodic movements of the toys and the majestic colors that expoded onto the screen....It was hypnotic...I began to wonder if the was some attempt at subliminal mind control...I just imagined by sweet baby as a toddler and we're out shopping at Target or, heaven forbid, the mall and suddenly we pass the rows of baby einstein products and my sweet baby starts screaming at the top of his lungs for one or all of these items!!!!!! Oh baby einstein, you evil genious!!!! I will forget about these crazy conspiracies for now..only because my child is silent and I can enjoy a moment of peace as he and I become mesmorized together by the creepy plastic bear with symbols....

The only stupid question is the one not asked

I am in healthcare, but I have to admit that when it came to cardiac defects and down syndrome I was clueless. I had to quickly educate myself. I was actually a little embarrased by how much I didn't know. We have been so blessed in the fact that Samuel has excellent doctors...with one exception....his neurologist, but fortunately we don't have to see her very often because he's being weaned off of his phenabarbatol...and I'm sure that she is very good at what she does it's just that she shouldn't be around people...at all..she has the personality of a leaf. She told us that we should be glad because at least Sam has a "good" downs personality. After that I  booked his appts with the nurse practitioner and I made sure to tell her why and I asked her from here on at to refer to Samuel by his name and not his diagnosis.
        I think that alot of parents are intimidated or aftraid to ask questions. I know for me, even being in healthcare, I didn't want to ask questions at first because I didn't want to appear stupid, but I quickly got over that. The more procedures that Sam had and the more doctors or residents I spoke with the more questions I asked and began to write them down so I wouldn't forget.  Both times Sam has been in the hospital we have seen multiple doctors and every one of them would tell us something different and that becomes very frustrating... I believe the breaking point for me was when Samuel was in the hospital for the first time as a newborn in the CICU and I had gone home late that night and returned early in the morning to find out that they had done a procedure without my knowledge. Needless to say that I had a hormonal induced break down right in the CICU. I let them know that was unacceptable and not to be done again. I AM HIS MOMMY!!!! No matter what my husband and I are his biggest advocates...and just because someone has and MD after their name doesn't mean they have all the answers...God placed within all mothers that little sensor. Every mother knows what I'm talking about. That alarm that goes off when something is not right. I know my child. I know what his different cries mean... I know when he doesn't feel good. I know when he's had enough and not even  the best doctor in the world will know my child better than me!!!! Always remember that and never be afraid to ask questions. You will be your child's biggest advocate

Ramblings of a sleep deprived mother

As I am sitting down to write this, I am watching the video monitor that is in my son's nursery. He is supposed to be napping, but he has decided a better use of his time would be to try to escape by pulling himself up using the bumpers on the side of the crib and scream for help. If he only knew how awesome sleep was, I have forgotten. I have vague memories of it. I can remember sleeping until noon, getting up and making myself something to eat, getting dressed and taking the dog for a walk or to the park, maybe going to Starbucks after that and hanging with friends. I can even remember a time when I would go to the gym.....Did you hear that thighs?? I used to take you to the gym....oh they have long forgotten that time..
        When we 1st brought Sam home from the hospital he was a month old and had a BT shunt placed to allow blood to get to his lungs, but his blood was still mixing because of  the hole, so he would only saturate between 75-85%. He was on a pulse ox monitor all the time and then only at night, but I remember just staring at that thing and if he would dip we would both jump up and try to reposition his head or neck. It was completely nerve wracking. He has never really slept through the night..even now..he will get up at least once...maybe 2 times, but there on no more monitors to watch no more checking to make sure he has his oxygen in his nose. I have learned to run on fumes and caffeine!!!!! but as I watch him on the monitor, which by now he has decided to turn himself around sideways with his feet sticking straight in the air and he's babbling at the top of his lungs, I think......I'll sleep when I'm dead...

Til Death or near death do us part

My husband and I are getting ready to celebrate our 3rd wedding anniversary on Nov 16th 2011. The big 3. It feels like we've been married for 30years instead of just 3. This last year has aged us both, but I hear that having kids does that to you. In the last 3 years we have survived 2 miscarriages and the birth of our son and all that came with that. Our marriage has definitely taken some hits. To be perfectly honest there have been days when I didn't know whether or not we would make it. The stress of taking care of a child with medical and chromosomal issues almost seemed too much to handle. We were not equipped. Not to mention the hormonal super storm that was raging inside my body. Every time I went to see Sam in the CICU the poor nurse just handed me kleenex right off the bat.. I was crying all the time and not sleeping and not eating and making my husband the enemy. I remember getting in the shower and just sitting in there for 30 minutes and crying and feeling such disappointment, disappointment in myself,my husband, and God...and then I remembered a verse from Psalms 121:1 ( I lift my eyes unto the hills from whence cometh my help. My help comes from the Lord..the maker of heaven and earth...)  I would just say this over and over again...For any couple going through something like this I can't stress enough that communication is key!!!!! I would just hold stuff in and then explode all over my poor husband...I am learning over time to let him in along the way...to keep him up to speed on what I am feeling. He's my best friend and my soul mate. He is the one whom God chose for me and I have to remind myself of that on a daily basis. It is so important to have a solid foundation and to always remember that God is in control no matter what ...and that the calmest place during a storm is in the eye....And laugh as often as you can!!!!!

This must be my punishment right?

the hours and days afters Sam's birth all I could think in my selfishness was how this would affect my plans..my life...my hopes and dreams that I had for our son...what now? would I still get to watch his kindergarten graduation..walk him to his 1st day of grade school...go to his band concerts or baseball games...watch as he goes on a date for the 1st time...what about marriage and my future grandkids?  What have I done to deserve this? Is this my punishment? What is God trying to do to me? As I looked down the barrel of open heart surgery and a life time of cardiology appointments...speech therapy...physical therapy...all these questions circled in my head. When would he say mamma? Would he recognize us...How much will he understand? I cried so much that I thought I was going to run out of tears. I yelled and begged God to change it...I know what I prayed for and this wasn't it!!!!!!! Or was it?
        As I watch my son now playing in his excersaucer and babbling at me and saying mamma, I wish that I could go back to the beginning of his life and celebrate. I was and still can be so selfish in my thinking. He has exceeded not only my expectations but everyone elses including the doctors. On my worse day he can make it better with one of his super smiles...He is like any other boy: energetic, mischievious , loving, grumpy, curious...all these wonderful things that I was not sure he would be. He is our miracle baby. He has taught me about patience and perserverence and hope and God's never ending love. I still don't know what the future holds, but I trust that it will be all good...We are 3months past his open heart surgery and he is doing well. I simply take it one day at a time and thank God for my gift not my punishment.

a day we will never forget

On Sept 11th 2010 we welcomed our beautiful 1st and only child into the world. Samuel Anderson Van Winkle arrived via emergency c-section surrounded by the neonatal intensive care posse and the pediatric cardiologist. He weighed a whopping 6lbs 11oz and was 19 and 3/4 inches long...He was also born with a serious heart defect called Tetraology of Fallot with double outlet right ventricle and a week later we learned that he also had down syndrome.  We were aware of the heart defect when I was 16weeks pregnant and as time went on we also learned that the risk of him being born with DS was high as well even though he didn't have any of the markers via us. I refused an amnio because I had 2 prior miscarriages before Sam and we decided that we would be blessed to have whatever God had for us.

It was a rocky start. Sam was immediately transferred to Sibley Heart Center the night he was born and I was able to see him the next night. It was so overwhelming seeing him with wires everywhere and his tiny little body laying there. I fell in love immediately. He spent the first month of his life at Sibley back and forth between the cicu and the stepdown unit. Before he left he received a BT shunt to help blood get to his lungs and a g tube because of his reflux. The day he came home we nearly ran out of the hospital and to the car and then the adventure really began. For 8months we were on lock down. We didn't go anywhere except to the many dr's appts and back home.