Amanda and the Hendersons

Today was that day that has been anticipated in our family for the past few months!!!  We knew that our baby was looking healthy, we knew that things were going good..........but now, we know our baby is a GIRL!! This news is weird.  So weird.  It feels like a dream to me.  For as long as I can remember I have wanted a daughter.......Being the oldest of four girls I had a lot of experience with baby girls.......and I always wanted one of my own.   Fast forward a decade or so, and I find myself the mother of two boys.  Boys are Boys.  They are crazy, wild, loud, destructive.........they are boys, and I know how to handle and mother boys. As the doctor confirmed that it was indeed a little {she} swimming about in my belly, I almost could not believe it! What am I going to do with one of those?  I am a little nervous.  But mostly SO SO SO SO SO SO excited!!!  We have had a battle going between the boys the last couple months......Paysen wanting a boy, Parklen, a sister!  The new

I have begun to write this post over and over for more than six weeks now.....always deciding to delete what I have written. Finding that much of what I had to say sounded far too much like an invitation to my very own pity party.. So many things have happened over the past 6 weeks......too much to recount.  Life seems to go by more quickly than I can even comprehend and no matter how I may try....I just cannot seem to slow it down.  The end of November marks many things for our family…I turned another year older, we celebrated thanksgiving. but the thing that stands out most to me is how the end of last month marks exactly four years since we first carried our baby through the doors of a hospital. Parklen is having treatments every four weeks for a while in Denver.....which means lots of trips for me.  His health is not something that I feel like I can talk about lately.  When I start to speak of things that doctors have said, or tests have shown....I find myself upset and wor

Here, once again......Parklen and I find ourselves in the hospital....Yesterday sucked....for lack of a better word.......If it could go wrong, it did.  Parklen was miserable and it felt like the day lasted for an eternity.  A procedure showed that Parklen's lungs are worse than they had even thought.  Today they started some "vest" treatments.  Parklen is strapped into a little vest, it fills with air and then it "wiggles" kind of hard, thus shaking loose all of the stuff stuck in his lungs.  The first treatment did not go over well.  He freaked out the entire time (add in some high dose steroids and it was HORRIBLE)  Cool news is, he has to do them four times a day....even when we go home.  They will be combining this with some other treatments.  They still have some concerns with Parklen's blood tests, and have sent a bunch of them out to other hospitals....still waiting to hear on those.  His main doc says it the best....."he looks bad"  an

I find myself treading water in the middle of my mother shape......my shape is a triangle. It has three sides. On one side sits Parklen, Parklen and his illness.....  His needs, he needs me for his care, for his comfort, for his everything.  I am constantly tending to his changing needs.  Constantly trying to anticipate whats next and stay a step ahead.  Always trying to protect him from picking up more sickness.  Having to keep him home from the things he wants to do because he isn't well.  Because other kids have germs that could bring him down.  The past two weeks he has been very ill.  I find myself staying up at night, running to his aide.....controlling his fever, remembering his meds round the clock, holding his hand as he looks me in the eyes and says, "Mama, I hurt inside."  His side is very heavy...... On another side I find Paysen.  My healthy, beautiful boy.  His needs are so different.  He doesn't need me because he is sick, he needs me because he

Have you ever wondered what it would be like to be the kid that barfs at school?  Ya know.....the kid who, in front of the entire class, loses the contents of their stomach.......  Well, after today, Paysen could let ya know what that's like.  He accomplished being the "barf kid" by puking not once BUT twice on the floor of his kindergarten class.  It has been a week for the Henderson's.....  Parklen picked up an infection and a collection of fluid in his lungs...We had a mishap at the hospital, lots of sleeplessness, and lots of being sick.  God has given Mama a break from her own sickness in order to take care of her babies....which is a huge blessing. The events leading up to Paysens little mishap at school today are a story all themselves....but for another day.  His white little face peering up at me from the nurses bed was something that I am not used to seeing....the kid just doesn't get sick.  I guess there is a family balance in that fact.  Give

So Its been a long long time since I have been here...... There has been so many complex layers of stuff going on it has been just crazy..... and so now, here I am......to let it all out and dump it on this page. Where do I even begin........ How about we start with the MOST of the giant elephants in this room...... So, we are having a baby, Yes, I have spilled that news. We are having our THIRD baby..... Yep, this is the third go 'round for me and pregnancy. However, this is the first time, IN MY LIFE, I have felt this sick. I have lost tons and tons of weight, my motivation, pretty much.....my norm. I have been getting up, taking the boys to school and going back to bed.....remaining in my pajamas...(if you know me well, you know how big of a deal this is.) Been sporting the no make up look, most every day. Please let me just come to my own defense for a second....I am not a wuss.....I have babies drug free, I can handle pain, I can handle stress.....but I have

Yesterday there was a birthday in the Henderson house.....Paysen, our sensitive, loving, smart, compassionate, witty, and wonderful boy turned 6!  Surprisingly I didn't shed any birthday tears like normal.....I found myself too busy trying to just make it through his day whilst feeling super sick.  We do a lot of candles for our birthdays!!  We start at breakfast......a request for his favorite, white chocolate pancakes adorned with some fire sticks is a good way to start your special day.  He got to choose his dinner location......Olive Garden was his desire.....and so we went!!  It was so cute and funny to watch his face as the staff sang happy birthday!  Another candle..... We ended the night with cake......I am not able to bake right now (this pregnancy is KICKING my butt) so instead of purchasing a cake, a friend of mine offered to bake him his homemade strawberry request.......more candles. We celebrated his birthday with friends a couple of weeks ago, I have

Let me tell you a little story....Its a crazy one. I can recall at least a dozen different people that asked me this question in the past 4 months, "Are you guys going to have any more kids?"  Each and every time I would answer, "I'm not sure, but defiantly not right now, things are just too crazy."  I believed this to be true. A little over a month ago I started having little feelings, feelings that I ignored.  About three weeks ago I found myself unable to drink ANY coffee.....none.....at ALL (if you really know me, you know that this is a big deal....I live for coffee)    That's when I knew.  Nothing on this entire earth could keep me away from my coffee.....well except for one thing..... I took a few tests at home, You could barely see the result and Devan insisted it wasn't there.....After a blood test, our thoughts were confirmed.  We are having a baby......a BABY.  Another child, ONE more human in our home......a baby.  You may be able t

This week has been an emotional and crazy ride.  I am not alone in Denver...Devan and Paysen are along for this trip............having someone to share the drive with is a wonderful gift....it will be especially wonderful when I leave the hospital this afternoon, after arriving at 5:20 am for Parklen's surgery and spending last night waking up every hour in a panic in fear that I had overslept.  This girl is going to be napping it in the car.....(this is a risky move around Devan...he is known to snap pictures of his dear wife snoozing along with open mouth, drool and all....) Parklen is back in surgery right now.....they are repairing his teeth that have been rotted away from his disease and his constant meds.....after that they will look at his lungs and see how they are looking after three months of treatment.  I am trying to hold myself together....but its been tough this week.  We took Paysen school shopping and the very thought of having a week and a half left with him

Well hello there......Been awhile eh?  Life has been keeping me busy, as it tends to do.  Some pretty exciting things happening for little Parklen that I would like to share......   A group of wonderful people are putting on a charity tennis tournament for the little dude!!! Awesome right?  Yes!!!  What's that you say? You don't know how to play tennis?  Well, me neither....really.  Unless, of course, you count Devan and I trying to hit each other with the balls in what we like to call, "Combat Tennis."  Fun stuff there.  There is going to be a beginners bracket...which we will play in and I hope, if you can, you will join us.  You can find the information about the festivities here . Annnnd, even if you decide not to play, there will be a lot of fun stuff going on!!  We are really excited about all of the support and help!! It is easing the "Going to Maryland" stress quite a bit!  What have all of you been doing?  Hello.........Summer is almost

This is how Parklen rolled around the floor today.....riding along on his IV pole. Yesterday when we came to the hospital, and they accessed Parklen's port......he didn't want me to hold him......because, "he's not a baby."  So I didn't.....  I could see him smiling behind his mask.... He did it, he isn't a baby.  I have dreaded this trip since our last one.  My spirits aren't high.  Three years and eight months of hospital's are getting to me.  Its something that I am used to, but I wish every day that I wasn't. This month the plan is different than it was last.  Its hard to try and explain to everyone who asks........ They are changing his daily meds to a much stronger drug....one they have tried before but not this high of a dose......hoping that he will respond better to it.  They are considering another round of scopes and tests next month.  And I have been reminded once again, to "think about the transplant." His

Here's where I stand....... I stand afraid, of the future..... afraid of the now. I stand hurt, I stand weak...... I stand confused and puzzled. I stand in the face of perfect strangers...... Ones that send me thoughts and prayers and words of my strength,.,,,, I stand wanting to scream at the top of my lungs.... "I am not strong..."  For, if for one single moment, I forget about God, take my eyes off of him..... I am crumbled on the floor, a weak and hopeless woman. I do what I must, and truthfully, some days I don't know how. I struggle, I tire. I know for certain........ I could not maintain......... with no faith. and I fail to understand how anyone could.......... I am thankful to God, that on days like this.... Days before I head to the hospital.... and I feel overwhelmed, and angry..... He loves me. I am thankful that when its hard to see the sunlight...... I can look to my past and remember the good that has been brought t

I feel like I have been really absent from my blog lately.  Not on purpose.....really, or maybe it is.  Life has been more of the same lately.  Sometimes I feel like I have nothing new to write about.  Its just things...repeating themselves...over and over.  So, I think that maybe people don't want to read my same thoughts....about my troubles....Then someone asks me, "why haven't you been blogging?" So I will. We are heading down to Denver this coming week.  Me and the boys.  Parklen is getting three more days of treatments and we will talk about what they have come up with as far as the future goes.  Thanks to his awesome medicine,,(have I mentioned my hatred for Prednisone?) Parklen isn't sleeping well.....at all.  Some nights its just restlessness, some....he is completely, crazy wide awake....Sometimes he wakes me up screaming..... its different each night.... but one thing remains the same, he and I are not sleeping.  The no sleep thing really set

Thought I would share a few photos from a few recent sessions.......For those of you not on Facebook... This little gal is a heart melter......the daughter of one of my oldest and dearest friends.  We grew up together and our families have been friends since birth.  I've always had a feeling that she would be the best Mama....I was right........and seriously, How cute is this BABY!?!?! Talk about some love....this is one of my all time favorite fams.....True friends....We have been in love with this family since the word GO.  I was blessed to capture some of their spirit in their photos.  Another Gal Pal......and her Sweety... This was a fun night with these two crazy love birds....Lots of laughs!  I taught this young lady years ago at Cosmetology School.  She is such a wonderful person, one of the best I know.....thrilling to do these photos for her.  I should probably also mention that both of my boys are convinced that she is their girlfriend....I havent ha

Wow, that was quite a break I took from blogging.  I have to be honest....I have been really busy, REALLY.  I have been spending most of my time doing shoots, editing shoots, scheduling shoots and editing shoots.  I am not complaing a bit.  This is like a dream come true for me.  If I have had any extra time, I have tried to fill it with something, all to avoid thinking about the things that I do not want to think about.  After our last Denver trip we stopped for a weekend of camping.  What a wonderful time for our family.  There was toad hunting, frog catching, fishing, running, playing, singing, swimming and fun.  It was what my heart needed right then.  I have spent a couple weeks only talking with Denver twice.  I have spent a couple weeks trying to maintain a sense of calm.  I have been floating on a cloud of avoidance.....trying my hardest to feel "normal."    Tonight, as I sat at my kitchen table....it all unraveled.  A simple email....99 words long.

Almost every day, there is an occurrence of concern with Parklen's cough.  In public, people stare at me as though I am the worst mother for bringing my clearly "sick" child out.....In the hospital, we get moved rooms a lot, because the mothers around us don't want their children catching whatever it is that Parklen has.  I want to scream at the top of my lungs.......I want a t-shirt that says.."My child's cough is NOT contagious...it is caused by his diseased lungs....diseased with something that you CANNOT catch"  and then I would probably add in, "My child is also on high dose steroids, so quit staring as he has an emotional break down." It is such a relief to me that Parklen doesnt notice the stares, or the concern about his cough....He doesnt realize that people dont want to be around him.....he just keeps on going, as if moving rooms again and again.... is such an adventure.  Im not so sure how I will deal with these situations when

This is my sister...... This week, she is my life saver. She is tagging along on this Denver trip.... and by tagging along, I mean playing with, watching over and keeping my Paysen busy. She is rocking my socks..... There is a program at Children's Hospital called "Beads of Courage"  It is a special program for children with cancer or blood disorders.......You receive a bead for each and every thing you have done for your treatment.  A collection of your courage to look at and admire. For whatever reason, Parklen had never received any beads.....I'm thinking because it took so long to get a diagnosis.....and by the time we had that, the beads were just forgotten. Today, they gave Parklen his beads. It took three necklaces to hold the beads, and it took me over an hour to string them.  These are Parklen's beads....... Every single one stands for a procedure or hardship that Parklen has endured over the course of the past 3 and a half year

This is how I found my five year old yesterday......sitting in the yard, in front of a self made fire pit....holding a magnifying glass.....trying to start a FIRE....  Can you say, Trouble??  Trouble for sure....but really, I have to be a little proud of how smart he is....I mean COME ON, he made that pit all by himself.  The last week or so have been super busy.....filled with craziness. I have had a million ups and downs.   Many doors have been opening for me lately....Doors that lead to a personal passion of mine.  After much prayer and encouragement from my family and friends.....I have been taking steps towards pursuing photography.  Starting small....have had a lot of wonderful people volunteer to help me practice.  And, thanks to one of the most amazing women I know, I have already gotten to experience what its like to photograph a wedding.  I have often dreamt of following this path, but over the past few years....I have stuffed any personal dreams down.  Knowing that my

No cell service, No Internet, No worries...... This is how the boys and I spent our holiday. In a cabin, In the woods, Atop the mountain...... The smell of a wood burning stove and fresh mountain air, clearing all worry from our minds. Sometimes, a cool breeze and a bunch of trees........ is just what you need. 

My shoulders have felt heavy.  I feel like I am gasping for air. When it comes to Parklen..........I feel overwhelmed.  Denver has been back and forth with me, still with no certain plan. A couple of years ago, I was given a meeting with the BMT (Bone marrow transplant) team.  It was one of the hardest things I have done to date.  I was told that often, as a last resort, children with ALPS are given a transplant, It takes months of living in Denver for Preperation and months after the transplant for recovery.....I was also told that with a child like Parklen, survival rates were only 60%  meaning that 40% don't survive.  After the meeting, I did my best to push all of this to the very back corner of my mind.  Since then, I have thought about that meeting only a few times, each time feeling sick and forcing myself to forget again. When I spoke to Denver on Monday, the Dr. said to me, "We are not quite convinced that its the right time for a transplant."  I was

The past two weeks have been a blur.....There has been so much going on and so quickly. It feels like it was only yesterday....I took my two year old Paysen to his first day of preschool.  That entire year, every Tuesday and Thursday the teacher's would have to pry a screaming Paysen from my leg.  He never wanted to be away from me......By the time I would pick him up a couple hours later, he was done crying....But it was the same every time.   Now, he is five.  He graduated from Pre-school thursday.  He is growing so fast. So fast.  He is ready for Kindergarten.  I am not ready for him to go. I want to hold him here, where I am his most favorite person, where his hugs and kisses come freely.....where we are.  I know that helping him grow up is my job, I just cannot believe how quickly it goes by. This is how he sees himself....pretty cute! I am so proud of this little dude. He is so smart, so sweet and so much my baby.  I am proud that he declared, in front