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.