Eleven?

Wow. January 3rd is here and once again, I am realizing how much I neglect this blog. Sorry blog, I will try and change that.

Back to January 3rd, a date permanently etched in my mind forever, still very vivid. That is our "Welcome to Holland" day (I will explain that later), eleven years have now passed since that day.

January 3rd, 2000, it was a Monday, just like this year. I was having what was to be a routine ultrasound as the doctor was unsure if the baby was breech or not. My husband was unable to come and at the last minute my sister, who was working not too far from the hospital, decided to join me for a baby peek. I will forever be grateful that God sent her to be there with me. We found out via that ultrasound that we were going to be walking a road that no expecting parent thinks they will ever have to travel. The road of a birth defect, in our case Spina Bifida. I had heard of this defect before, but was not educated on it. Well, an education we got, a 16 day crash course in "How much your life is going to change and sorry about your previous dreams for your family" type crash course. The very next day we were down to The University of Iowa Hospitals and Clinics. We heard many things from paralyzed from the waist down, bowel and bladder issues, learning disabilities, wheelchairs, bracing, surgeries, etc etc. All VERY overwhelming and very much not where we thought we would be. Many Dr. visits, ultrasounds and meeting specialists happened in that 16 days, almost every appointment my sister, Dawn joined us, to take notes, we were there to listen. I had a couple amnio's done to test for lung maturity. The plan was to have the baby as soon as the lungs were mature to prevent any further damage.

Backing up a bit. Spina Bifida is where the spinal column does not form properly, leaving the nerve endings unprotected in the spine. It is also one of the most highly aborted birth defects. Our baby had a sack that was on his back that contained spinal fluid and all those precious nerve endings that control the lower extremities, bladder, bowels, muscles, all those things that most take for granted. Our baby had an opening of 6 vertebra that were not formed, T12-L5, that's a large hole in such a little person.

We went in on Tues, January 18th for an amnio, we were told if the lungs were mature, they would call us and to be there the next morning for delivery. Sure enough we got that call. We had made the decision to have a c section to deliver, for the safety of that sack of nerves, so they would not possibly be damaged in a natural delivery. We did have a Dr. try and tell us a natural delivery was an option, I still cant for the life of me wonder why he would think we would want to damage those nerves, nerves that may be ok and still able to function properly when they were put back during surgery.

Delivery went well, minus the student nurse that passed out. Mr Jarrett Christopher entered the world at a whopping 9lbs 3 oz 20 inches long. I got a quick view of him as they needed to take him to the NICU to be evaluated and watched. As soon as he was stable and prepped, they were going to close the back up. He was 7 hours old when he had his first surgery, 7 days for the second. He had a 16 day stay in the hospital before coming home. Let me tell you, leaving your baby for the first time at daycare is NOTHING compared to leaving the hospital without your newborn.

Many surgeries, prosthetics, tests, wheelchairs and therapies have passed. All have changed our family in so many ways. And in so many ways I cannot even begin to explain how grateful I am to get to walk this road. This young man is too soon to be 11, I can't grasp how that does not seem right, that much time has not passed since that day we found out about our new path. But it has. And he is a remarkable boy, tender hearted, funny, smart, has many people who know him, and has a smile that will melt your heart, not to mention eyes that draw attention. Even though there were many times I have asked God, why us? I know I wouldn't change it for anything.

Back to my Welcome to Holland reference, there was a poem that I came across after we found out of our new road we were to be walking with that name here it is and I love it each time I read it still.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Changes

I have been doing a lot of thinking lately about life and all the changes that happen. Just looking around we have one of the most beautiful changes happening around us, Autumn. The leaves are changing and nature is preparing itself for the next season. Isn't that so much like we do?c Constantly preparing for the next season in life? Whether it be children growing, changing friendships or the dynamics of our neighborhoods, life is constantly changing. We have lived in this neighborhood for eleven years now and really there have not been very many changes. Sure we have gained a new home behind us, the neighbors girls have grown and moved out to start their own adult lives and one is going to be having a baby in a few months, the trees have gotten significantly bigger and yes, we have added 5 kids since moving in. But one change that I have been noticing the most lately is the elderly neighbors. We moved into a neighborhood where there were several "older" families and not very many young ones at all. Several years ago the spunky man across the street passed away and this spring another man kitty corner from us passed on. There is an elderly couple across the street that have been in poor health the last few years and currently he is in the hospital. The sweet little old lady whose husband passed a few years ago fell and broke her hip a year and a half ago, her family has been going through the house and cleaning things out to prepare to sell it. The dynamics of our quiet little neighborhood will change a lot depending on who buys it. I secretly hope it is a nice family with kids around some of my kids ages, especially Jarrett. Boys are scarce around here.
Another big change has been my children, where has the time gone (and this year has been fast) Jeni is 19, Jarrett will be 11 in a few months and he has changed so much in appearance and attitude. Gabi will be 7 in March and is changing a lot, she has lost a couple teeth and is a very good helper with Eliza and loves to be a girl. Gretchen will be 5 in March (which seriously is only 5 months away?) that is a whole hand. Yikes! She seems to be trying so hard to be a good helper with Eliza as well, however she has not found her grace yet and Eliza is too big for her to help in the ways she wants to. Elliott will be, gulp, 3 in 8 weeks. He is a blast and has an awesome imagination. And little Miss Eliza, she is almost 8 months old already, really? How can that be? I just had her a couple weeks ago. She has changed so much in appearance and is doing as all babies do, growing and learning new things. I want to freeze time, maybe on a warmer day though.

Conspiring?

When we were kids my older sister and older cousin Veronica had this great game called "Run from Jan" The name of the game is pretty self explanatory as to how the "game" worked.
So, I couldn't help but wonder a couple weeks ago if something similar was going down at my house with Gabi and Addy and Gretchen. Addy was over to play and they asked if they could play face painting, I said sure, naively thinking of little things on the cheeks. NOPE.
A few minutes later Gretchen comes walking up to me looking like this:






I don't think she had any idea what she looked like. I couldn't help but wonder if she consented to the full markering of the face or if it was something plotted out by the older two.....hmmmmmmm

Conversation

This is the conversation that went on the other day at our house:

Me: Gretchen, go get dressed

Gretchen: Can I wear a skirt and shirt?

Me: Sure

a few minutes pass, she returns, in just her underwear

Gretchen: Why can't I wear a dress? (insert whiny voice)

Me: You can, you asked if you could wear a skirt and shirt, so I said you could, I never said you couldnt wear a dress, go ahead.

a few more minutes pass, she shows up wearing....a skirt and a shirt. She baffles me.

It's about time!

Wow, after a friendly reminder that I have not introduced the newest member of our home (thanks Audra!) and a friend discovering and reminding me I have a blog (Hey Josh!) I pulled it back up. Much to my dismay my background had a snowman on it. Gesh! That guy would only last about 2.5 seconds outside today. Time for some updating.
Our lives are not too action packed and no way will I bore you with what has been going on since December in our lives...BUT I will share with you about our sweet little addition to our home. No, I am not talking about any structural changes to our house (however another bathroom would be nice, and a functional basement, and a bigger kitchen and bigger laundry room hehe) I am talking about sweet little Eliza Christine.

Miss Eliza Christine was born March 4th at 1:09 pm and weighed in at 7lbs 12 oz and 21 inches long. Now most people will say, that is a good sized baby, pretty average in size and I would agree. However miss 7 12 coming in after her brother who was 9 lbs 11 oz and the rest of the siblings around 9 lbs, she was as I liked to call her, Dainty.

I am going to rewind the story a bit and tell about her birth, which in itself was alot different in ways than the others as well. Actually alot of my pregnancy was different, less weight gain (nice) not as much pregnancy sickness but more illness that I couldnt kick, like colds, sinus infection, bladder infection.

Anyway back to the big day. We arrived to the hospital and went through all the get changed, hooked up to the monitor, IV put in, blah blah blah, oh yes and for those who dont know, this was a planned c section and our 5th one too. So we are hanging out waiting for everything to get ready, I am texting with my sister (Hi Dawn!) and watching Tv. Chris is reading the paper, pretty normal stuff for us pre baby. They come and get us to goto the recovery room to wait until it was time for me to go in the C section room and get my spinal block. Some someone who was to be there wasnt able to get there right away so back to our room we went. Well, they had already moved my bed to outside the recovery room so I kicked back as good as a largely pregnant woman can in the recliner. Still texting with my sis to let her know what all is going on and talked to my Dad on the phone who had gotten turned around in town and needed help to the hospital.
Finally they came to get us and I went into the surgical room. Now they dont allow husbands back there while they are putting the block in, which is ok as mine doesnt like needles. Now the anesthesiologist was a VERY tall man and he had the bed raised up so high I didnt even have my feet on the stools they give you to put your feet on while they put the spinal block in. So was just a bit difficult to get my back right to help him out with nothing to push my feet on. He got the necessary stuff in and they laid me back while the spinal was kicking in and got me all prepped to go. Only the spinal never took. They tested and waited and repeated several times. Finally the anesthesiologist leans over to me and says "the block isnt taking" (really? so those pinches of pain were not my imagination?) "we are going to have to put you under." I was stunned by this and really not aware of any other options so I agreed. Now this also meant my husband would not be in the room either, since I would not need a support person. This I hated. We had already planned on getting my tubes tied while they were in there and neither of us were going to be able to see the baby in her first minutes outside of me, not the way I had pictured going out of my season of having babies. So, out I went.
I remember them waking me and I was in the recovery room, my nurse was asking me questions that I could only nod or shake my head at. My mouth was super dry as they give you a med to dry out your mouth while the tube is down your throat and my throat was a bit sore. (I kept thinking to myself, now I understand what Jarrett goes through) I was also in ALOT of pain. I remember my nurse asking me if I was numb, they assumed the spinal was just taking awile and would kick in, well it didnt and I was hurting really bad at the incision. So they qickly started me on Morphine with the PCA pump, I kept refering to it as my friend and truely it was! On top of the incision pain they were giving me pitocin to help stop some of the bleeding. The doctor told me I had alot of scar tissue and it bled pretty bad and found out the next day that I was pretty close to needing a transfusion but my blood count started to go up on its own. (whew)
It seemed like forever before I even realized my husband was in the room, I heard him talking to the nurse who was checking the baby. He took my hand and I wanted to cry, but couldnt, all I could do was stare at the ceiling and breathe through the pain and suck on a washcloth to wet my mouth. Finally I was able to ask him how big she was, figuring upper 8's at least. I had to ask him a couple times to make sure I heard him right. She was born at 1:09 and it was after 3:00 before I was taken back to my room. Completely abnormal from what we were used to. With the others (except Jarrett) I was able to nurse the babies in the recovery room and look at their sweet faces right away. Not this time, because I was out of it and in pain they had Chris give her a bottle and it was a couple hours before I could really look at her face and really see her. This being part of the reason she was nameless for a day and a half. We went into the hospital with 2 girl names Eliza Christine and Evelynn but not sure on the middle name. Like we had done with some of the others we had to see her to decide, and we couldnt decide which one she looked more like. We decided on Eliza but the poor little thing, her mama called her Evelynn a couple times :) and in my foggy mind was worried we picked the wrong name.
The day after she was born I got a call from the anesthesiologist to see how I was doing and if the block had taken later. I told him it had not. He said they were going to be doing some investigating as one of his colleagues had the same thing happen to another woman and she had to have a general as well. Both of us having medicine from the same batch and they were thinking it was bad, so they had pulled all if it from that batch. I am glad, I would hate to have someone else go through that. I never did hear anything else about it.
All in all, we got our sweet little one, she is very precious and has killer smile. She stares right into our eyes and she has this look of maturity in her eyes, alot like Jarrett had. In fact her personality is alot like his as a baby.
We are now enjoying this last season of having an infant and it is exciting but scary and sad to move past as that has been what has defined who I am for so many years. Now I have to find a new me in this new season of life. Scary, but I think it is going to be a fun adventure!

There Mama

Having boys can be one of the sweetest things for a mom. Elliott has recently started his training to manhood by taking care of me with various little tasks, all done with no prompting by me at all, just warms my heart.
I first noticed this trek from being a toddler running around doing crazy things to actually doing something for me around Thanksgiving time. I was doing some cleaning and he went and got a toy hammer out and was hitting everything with it, the cabinet doors, the wall, couch and when he was done he would look at me and say "there mama" I guess he is fixing things for me. This act of sweetness has grown into other things, like kisses on my arm or hand (even my belly the other day) all followed with the same "there mama" It is soooo sweet! The other day we were snuggled on the couch and he kept leaning over and kissing my nose!
This morning he did something different, after putting in the morning ritual of Finding Nemo and we were walking over to the couch, I could feel that he was guiding me with his little (ok he has large hands) hands! What a sweet little man I have, already taking care of his mama and being my protector!

The Toe

Wow, It has really been a long time since I have posted anything. Geez, better get this back up and running.

We took Jarrett in for his once every 6 months check up at UIHC for his scoliosis. Great news no change, so the TLSO (back brace) that he wears is doing it's job. Part of the routine is for them to also check his other bracing and his feet, we had an issue this fall with a pressure point sore so everything gets checked out. When the Dr took all the gear off of the left foot, his pinky toe just flopped over to the side. I was behind Jarrett and was a tad shocked to see that happen. I had only ever seen something sticking out that way and that was when one of the wrestlers in High School dislocated his little finger. So, back to x-ray we were sent and sure enough, it was dislocated. No clue as to how that happened. Boys are hard on their bodies and when you can't really feel your feet or legs, we are always battling something on him. But this little toe seems to have become my foe. It is always cracked, bleeding, torn up, and I cannot seem to keep it healed for anything. So, the dr tried resetting it, Jarrett cried. I am not so sure it was due to feeling it as much as seeing what he was doing. We got sent home with gauze(because he ripped the skin open, again) and tape to keep his toes buddy taped together. We are generally never lacking a year in Jarretts life where we have not had to gauze and tape somewhere on him, generally those are more likely to be found in the closet instead of bandaids in this house! New type of taping for me to achieve, feel like if I could only stand on my head while doing it, it may just work better! :)