Stop This Train....

I decided this morning that I just HAD to update this blog today. Like many things in my life, I let it get SOOO behind that I get overwhelmed at the prospect of catching up! But, I am not going to take my usual path of avoidance until it disappears so that I can add it to my "failed projects" list. I am going to grab the horns and do the best I can. 
As I sit here at my desk, John Mayer popped up on my IPod singing "Stop This Train". Unfortunately, although I've rummaged everywhere and I KNOW I just saw it last week, I cannot find the remote to my dock, so the only way to skip over it like I usually do is to get up and go over there, and Lord knows that's just too much to ask. So here I am, listening, balling as I always do, no matter how many hundreds of times I hear it. It brings to the surface how much I want my Dad, and my Mom, and to see my siblings more often, and to not be 35 and feel like I have absolutely nothing figured out, and how much I wish sickness and loss and sadness did not have to exist, and how I wish I had a magic pod that would allow me to travel instantly to see good friends that I don't get to spend nearly enough time with, and how I don't ever want to go one day without seeing or talking to all 3 of my girls, although I know it's inevitable and it's going to be here long before I want it to. OK, whew, the whiney-cry-fest will now cease and desist!
So, you may ask, what's been going on since the end of January?!? Well, since my last post described my journey in returning back to work,  I guess that tells some of the story. Talk about overwhelmed! Not sure if that is ever going to get better, but I can say that I am in a better place on July 6th that I was on February 6th! Have I mentioned lately that I work with the best people on the planet?!?
Otherwise, we have just gotten caught in our daily life survival mode, and boy does this train move FAST most days. Homework, dance and gymnastics, art lessons, church, birthday parties, meetings, doctor appointments, therapy appointments, more doctor appointments, more therapy appointments, being on the phone making appointments, refilling prescriptions, forgetting to pick them up, etc. etc. etc.{ I have to add at this point that one of my favorite things on the planet right now is the Walgreens app  that allows you to scan the barcode on medications and it instantly submits them for refills.Two thumbs up!} Although it is a crazy, tiresome life, I have been so grateful to be back to our "real life" with Clark along for the ride.

How's Clark doing, you might ask?
She is doing GREAT! It is so hard to believe that in less than a month, the day her Dad and I have prayed and longed for will be here. She's going to be ONE! As much as we've never wanted to rush time, we have been told by so many healthcare professionals "by the time she's one, things are going to be much better", that we couldn't wait to be there, for her sake more than ours! She was cleared at the beginning of June for us to begin to feed her more than just formula. And let me tell you, girlfriend is all about some food. She is definitely her parents' daughter! We have been trying to make a daily balance of the risk of trying any food with any amount of texture to the safety of keeping her airway and esophagus open and clear. Most days, we keep that balance in check. Other days, a teeny piece of chicken creeps in and causes 12 hours of trauma. Again, not wishing time away, but I CANNOT wait until she can tell me when food is stuck and when I can reason with her to chew more and drink more often. I also long for the day that we can  be in public without people assuming that she has the croup or some other deathly communicable disease that will surely be passed on to themselves or their children. Not sure that one is ever going to come, but at least she will be old enough to educate them if questions are asked. Bryant and I comment daily that she really is the best baby on the planet! She is also very sweet and funny and brings so much light into our home! Our lives would definitely not be complete without her.
How are the other two?
Well, tomorrow is Jayda's 10th birthday. Yes, I said 10! Double digits, last year of elementary school, 10!! I am telling you, this one is rough. I guess I almost feel like we are crossing this threshold of what may or may not look similar to Alice in Wonderland scenes and we just have to hold on and pray until we make it out to the other side. When I think about the next 8-10 years, all the changes we will all go through, all the firsts, all the trust and faith we will have to muster up, all the freedom we will have to give, I just about get nauseous. I just hope we get to the other side and none of us has lost our "muchness". However, I just know it's going to be all good in the end because she truly is an AWESOME person. She is so bright and loving and attuned to those around her and articulate and compassionate. She has become a wonderful helper to us and her sisters simply adore and idolize her. When I allow my mind to sit in the thoughts of all she has overcome, I just can't help but praise God and marvel at her strength.

Brynn, of course, is just being Brynn: quiet, sneaky, meek and beautiful. What I marvel about mostly with her is how much is going on inside of her head and heart that we rarely see. As much as Jayda is "external", she is "internal". She will be starting Kindergarten this year and we are trying our best to make decisions for her that are about her. We long for her to be her own person, not just Jayda's little sister. We want to find her strengths and grow them. Another threshold here, and although we feel like we have been here before, we know it looks so different through a different set of eyes.
As a family, we have had an exciting summer. We got a travel trailer and have been fortunate to spend time together away from the distractions of home: chores, TVs, work, computers. We have a couple more trips planned in the next month and are looking forward to lots of quiet and quality time together just "being". Getting a camper is something Bryant and I have wanted and talked about for the past few years and, although we still aren't sure if it was the smartest decision financially, we felt like we wanted to take advantage of every second we could milk out of these girls while they still want to be around us and we thought this would be a great way to do it.

Hopefully this will not be the only blog post that I get to in the next 6 months, but if you don't hear from me for a while, please assume it's because we are doing something like this:

Hi Ho, Hi Ho.....

So, I started back to work this week. Or at least I started leaving my house and going in to work and doing something while I was there. I just feel like my brain is mush and I can't make any coherent sense out of what I need to be doing at any given time. I keep trying to find the best way to organize my thoughts, ideas and to-do lists, but then can't even make myself sit and get it all down on paper. I think I am subconsciously afraid that once it is on paper, it will just be too much and I will lose it! I also think I am in a subconscious state of, "this is too good to be true, so surely it won't last". I wish I had been able to DVR my work life for the past 6 months (or even the past year) and go back and watch it so I wouldn't feel so completely out of any possible loop I should be in. It almost feels like I am starting a new job. I just have to keep telling myself-" it's OK, it's going to all come back to you and then you're probably going to wish you were still in that state of oblivion!"
Having said all of that, I just want to express my thankfulness for all of the following (in no particular order):
1. I have a job and work for a system that has been so supportive of us, which has allowed me to take this time with Clark (and Brynn). Not only that, but I have a job that allows me, at this very moment, to help fill the auditorium behind me with the laughter of about 600 Kindergartners as many of them witness their first stage musical. What could be better?
2. I have co-workers that are the most wonderful, generous, loving and hard-working people I know. They have been, and continue to be, right there to help in whatever way they can.
3. I have a husband that understands me, and all my internal turmoil about this returning to work thing, even when I drive him crazy with it.
4. We have friends and family that are willing to help us with the "logistics" of the daily life of our family.
5. We have found someone who has been willing to take on Clark's "high-maintenence-ness" on a daily basis, and (so far) has done it all with a smile and love! This is awesome-er than you can even imagine....
6. I have the pleasure of working with the best teachers ever, who have been amazingly supportive, understanding and patient.
7. Perspective....every day, I get a little morsel of something that reminds me of how extremely blessed we are as a family.

None of us knows what tomorrow will bring, so I am glad, for now, to experience the gift of today.  Suddenly things that used to feel like a hassle feel like a wonderful opportunity, and I hope my mind stays in this place.

Brave

I found this poem on another blog, which I cannot speak about specifically right now, as it will make me have a complete emotional fallout {and those are so rare for me ;)}. After I read it, all I could feel was such gratitude that the Lord has blessed me with such brave little souls and for every day that I get with them! I also marvel at all the other brave little souls that we know and at how much love they have brought to our world. I will never ask "Why?" again...

The Brave Little Soul
by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

tiiiii-yerd......

Many times, when I ask the bigger girls to do something, such as "put away your shoes" or "clear the table", it is usually met with, "but, Mom, I'm tooo tiiiiii-yerd!" Interestingly enough, they are usually having their own personal dance party with Pandora upstairs within a couple minutes. Boy, do they recover fast! ;) I am definitely having a  "tiiiii-yerd" day, but I do not anticipate a brief recovery. Yesterday was a 'drive to Chapel Hill, talk to 5 medical professionals for 2 hours, drive back home' day, followed by getting the bigger girls from dance/gymnastics, try to hunt down a nebulizer machine, not physically harm anyone in the Walgreens (including, but not limited to, Brynn- who had to potty- so we had to beg the worker guy to unlock the potty since they had already closed it for the day because it was clean {canIdothisathome!?}- who had on tights and a leotard so you have to completely undress me-who really didn't have to potty after all! -who, as I type has on a bikini, but that's a whole nother story- that Brynn) and get back home to finish cleaning out the closet that I had already pulled everything out of to make myself finish. And then, we had COUGH BABY! Cough baby was determined to pull an all-nighter. She did not feel she had prepared quite enough for today's coughing exam, apparently, so she practiced all night! Bryant helped her study much of the night, but I pulled the last shift early in the morning. And, boy, did it work! She has coughed like a champ today. I give her an A++. Personally, I think she's competitive and just wants to out-do Jayda's 6-day coughing extravaganza that started last week.

Anyway, so we now have a new piece of equipment to add to our medical arsenal. A nebulizer shaped like a cow's head that lives in a barn bag. We haven't used it yet- going to do that in a few minutes. The funny part is that Brynn refused to hug a friend when leaving preschool the other day because she was "smokin'", so we can't wait to see what she's gonna do when she sees Clark "smokin'". So, we are getting ready to gear up for medicine hour. It's a little party we have each night. All 3 girls are on antibiotics right now- Jayda also has flonase, claritin and delsym to take, Brynn HAS to have her medicine in ice cream, and Clark has precavid, erythromyacin and now some other antibiotic that starts with a C they said tasted like feet, so it was a good thing we could put it through the g-tube. Now we have to add a 20 min. pulmicort neb treatment. Someone's bound to get the wrong dosage! 

Anyway, I guess I am going to go now, because after several minutes of trying to determine if we could possibly get away with not bathing them tonight, we decided we couldn't. That would just be one more piece of evidence for DSS to use against us, and we want to reserve all of our chances for big things. Here's hoping for a silent night!

Awareness

I haven't posted since last Wednesday! AHHHH!  It has been a crazy few days. Jayda's been fighting a cold/cough thing, which is so frustrating because she can't sleep for coughing. Bryant had all-district auditions all day Saturday and had 13 kids make it, which is AWESOME! He is such a good teacher. I want to be like him when I grow up! ;) The only bad thing is that we "lost" Saturday, but this is the season where we lose lots of Saturdays for school events, so I better get used to it! Mom came for the weekend and we got to spend some time with my brother and his family, so that was great!
Today is going to be an interesting day. We will be joining Lillie (the little girl I told you about last week that was born with the same condition as Clark) and her mom for an interview about EA/TEF  that we hope will be in The Daily News. January is EA/TEF awareness month, so we want to spread the word. This is a condition that sometimes even doctors don't know about, but it is believed to occur in 1 in 4,000-5,000 births worldwide. We hope that spreading the word will help other moms and kids like ours.
Now, back to the beauty of God's plan! We found out that one of our favorite couples in the world also had a baby with EA/TEF. Their baby is now 37! It's amazing that we have known this couple for a while, mostly on a professional level, but I felt that I knew quite a bit about their family. I can't tell you how surprised I was to learn about their son. I have been able to talk to them briefly about their experiences, but look forward to hearing more about their journey soon. I can only hope that we can look back on these days when Clark is 37, take a big sigh of relief, and thank the Lord for his mercy and grace. I felt for several weeks that we were alone in this journey, but I know now that God was just waiting for the right time to connect us with those we needed to be connected with.We now have several people that we can talk to, and I have also found some great support groups through Facebook with parents from all across the US. Although we all have different paths, and are at different places along the way, it is amazing to have the support of those who "get it" on the most basic level.
Well, gonna go for now. Clark and I have to get "primped" for our interview (ha)! I'll let you know if/when you can check it out in print! Happy Monday! :)

Trudging over the hump...

The past two days have left me feeling a little low. I guess it's mostly the "post-holiday, back to reality" thing, but there are a few other things that aren't working out exactly like I had hoped. I try to remember that God is laughing while I make my plans, but sometimes I think maybe he and I just might agree about what should happen next. That's what I get for thinking! Anyway, if you have a minute to lift me up in prayer, specifically that the path I should take will become clear to me, I would be most appreciative. We had home visits today from two of Clark's early intervention case workers. It is incredible how much support NC provides for Deaf and Hard of Hearing kids and so neat to have lovely people that are available to help. We know how much all of these folks helped Jayda and appreciate all the support for Clark, as well.
We have plans to meet another little girl whose story is eerily similar to Clark's and who lives close by. However, she is now 6 and is in 1st grade. I am very excited to meet this beautiful little girl and her Mom, as I know they will provide me with comfort and hope, but will also give us a little glimpse of the "unknown". I am also excited for our big girls to meet her so they can see that, although Clark will continue to face challenges, everything is going to be fine and Clark is going to soon become the "other best friend" they've been anticipating.
We had a very nice joint shower today at Bryant's school. His staff, along with so many other friends and colleagues in the OCSs have been amazingly wonderful to us over the past 5 months. I feel like we should be giving them a shower, rather than the other way around! We are so thankful for their generosity and love.
Well, I have another to-do list staring me in the face, so I guess I will go now to try to move forward with that. Love to all!

one/two/onetwo

Probably a quick post for today, but I just want to say that, after quite a bit of searching, I think I may have found two families within driving distance of us that have kids that had EA/TEF repairs like Clark. This is quite exciting, as I hope to get to meet these families face-to-face at some point. It will be so neat to talk to those who have "been there" before us!
Busy day for all of us today and lots going on tomorrow, as well. Back to reality in a hurry! Off to get the bigger girls tucked in. They are very tired from being so completely off their sleep schedules, as are we. Hoping we will get back on somewhat normal schedules by the end of the week. Love to all!

Happy New Year!

2012 is here! We are in "Sunday afternoon" mode because, as much as we wish it wasn't, tomorrow is a school day for OCS. So, it's get the groceries, get things put away and get everything ready for another crazy, full week. We have more on our to-do list than we have time for this evening, but we will commence to do as much as we can before we crash. We had a great time with friends last night and Clark seems to be adjusting to her pump feedings. Today feels sort of like teetering on the very top of the roller coaster before the drop~ we are not really sure what is to come, but we are pretty sure there will be big drops, hills and valleys, and things that will flip us completely upside down, but, overall, we will look back in December, when we exit the ride,  and realize that, although there were a few scary spots, we had a blast overall. So here I go; off to get on with the year Jayda enters the "double-digits" and starts her last year of elementary school, the year Brynn starts Kindergarten, the year that Clark will have so many FIRSTS! What an awesome thought. Even more awesome are all the little things that will come that we don't even know about yet! May God's blessings abound for all those we know and love!