5 years later...

It's hard to believe it has almost been 5 years since I last blogged. There have been times that I have missed writing. Maybe even craved it, but never made the time to sit down and get back at it. I began to write so that family and friends could keep up with my crazy life, but then Payson happened and it became my way to keep everyone informed. Eventually the hardships with Payson and the roller coaster ride we were on became so painful that blogging was painful. I had to relive what I so desperately wanted to forget. Unfortunately in doing so I have no record of our daily up's and down's for the past 5 years and I regret that. My kids deserve a record of our life together. So, here I sit on a Saturday night dipping my toe back into the water. Updates: Payson - No longer has a trach. No longer has a hole. We no longer have a nurse during the day. No longer has dreaded diseases that should be lifelong. He has been healed of many complications. That isn't to say we don't still have problems as we do, but he has come so far. He does still have a g-tube as he can't consume enough calories to support his body. He is small, but he is mighty! Boy is he mighty! He can run, jump, swim, bike and play. He outlasts us all! First grade has been a success and we are looking forward to second grade. MR - aka Mother Hen. She is super smart, beautiful, tender, kind, fun and a complete joy. I have spent the last half of the year homeschooling her, (homeschooling is not meant for me). As far as her brother is concerned she can care for him better than I. She has begged us to help in caring for Payson, so these last few months I have showed her how and she is a natural. Although she has decided not to be a nurse she will be helping people by being a police officer. You go girl!!! Zach- is 20! Crazy! He is a full-time student at University of Texas San Antonio. His major is actuarial science...calculating risks. Todd and I often wonder what got him to that specific degree and come up empty, but he is well on his way and has his whole path planned out. Texas is okay for now, but he looks forward to returning to the East Coast. Condensed populations seems to be a thing missing from Texas and he misses it. No one special in his life, but is living with a friend in an apartment and plays ultimate frisbee, until he hurt his knee. We have him this week, but have to let him go back to do summer classes. Walker - oh, my boy Walker! He is also 20 and we are planning a 21st birthday get-a-way! Due to college costs he decided to go to the local community college and get an associates. He has been developing his art and is a very talented artist. Some of the things he draws I question where he comes up with it. It's amazing to see how his mind works. Tattoo's are a passion of his and has a full arm sleeve of water themed tattoos. It's his desire to become a tattoo artist, but not just any artist a business owning one. Like Zach, he seems to have his path planned out. He still lives at home and helps out with the kids when needed. Its fun to see these young men become adults and deal with the real world. He and his friends have turned out to be great young men. I am super proud of all of them! He does have a special someone and has for the past year and a half. She is a delight and is the ying to his yang! (: In the past 5 years I have learned of some health issues that my body hosts. They are pretty scary if I focus on them, but I rarely allow myself to sit and dwell, but try to live my life one day at a time and as if it is my last. There are times I will text someone to let them know how special they are to me and they immediately wonder what I want, but it's just me trying to make sure all the people in my life know how much I appreciate their presence in it. It's these moments of appreciation/deep thought that I have craved my return to writing. Funny how life reminds you of what you need. Well that's our update! I will try to continue writing on a consistent basis as it is more for me than anything else.

The Eve

As I sit here on the Eve of Payson's 3rd birthday I find myself doing what most other mom's do before their young child's birthday; reflect. Most parents think in terms at this time we were doing this; right now three years ago this was happening, only so many hours until the arrival, etc... I find myself doing that as well, but with a twist. I think about how ignorant Todd and I were. We were blissfully waiting for son's arrival only for the birth to be traumatic for all who were there. I think in terms of what we were doing, what was going on and how many hours, but I find myself harboring dread of what I now know would happen. All the hopes turned to fear, all the excitement turned into tears, all the wishes turned into prayers and the normal turned into a world turned upside down. 9:06 am three years ago marks the time when our lives changed and our battled to save our son began. Within hours of his birth he'd be transferred to another hospital. Within 24 hours against my doctor’s desires and low on blood I signed out to be at my baby’s side. The next few days Todd and I desperately tried to process the information coming at us with computer speed. We endured our first surgery, the news that we'd have to wait a couple weeks and that the medicine I took possibly had done this to my baby. It isn't a moment I like to relive, but one that is permanently etched in my memory.

Yet, as I remember all the gut wrenching heart ache I also remember this precious life. The one who was so tiny with tubes all over him and many imperfections (need I remind you of my favorite genetics doctor), but oh so precious. That birthday eve as Payson refused to sit in a spot so he could be monitored was he was foreshadowing how much of a stubborn fighter he'd be? Those long 151 days in the ICU when I was moments from losing him to those days when he'd just smile the day away. The moment that I almost broke down when we were walking down the hall of the ICU with Payson on the stretcher as we were finally headed home and we stopped so I could erase his name off of the patient board. Such a simple action, but one I clasp to greatly! Payson's has defied the odds and exceeded everyone's expectations. He was able to quit his therapies early as he reached their goals, he communicates very well, eats everything in sight (as long as it is chopped up), he runs around like a child who sat in the hospital way too long and has got to make up for lost time. Even his doctors are impressed with what he can grow out, be diagnosed with and how "interesting of a case" he is, (none of which is a good thing, but he is exceeding). For the most part the bad has given way mostly to the good. Although I am left with some not so fond memories of his birth he has given me a bazillion times more happy memories to outweigh the bad ones.

Payson,you are one of a kind! You walk around with your back straight, head up and parade around like you own it. The vocabulary that comes from your lips downright shocks me sometimes. Your belly laugh is so contagious and your personality beams. There isn't a person who looks at you and doesn't smile because of how cute you are, but also because of the orea you possess. Your life has strengthened our commitment as a family, parents and in our marriage. You have done this in only 3 years of life; boy oh boy I am looking forward to seeing what else God is going to do with you! Son, you are a gift to this world, but mostly to me and daddy! I love you passionately! Happy 3rd Birthday!!! On a final note: I will never forget my OB looking at me after the MRI confirmed Payson was okay and asking me, "What would you have done had it shown he wasn't perfect?" "What do you mean", I asked. She replied, "Would you have aborted?" "NO! He is perfect as he is!" Knowing what I know now I still stand by my reply. A verse God gave me for Payson last year just because: "Out of all the people on the earth the Lord chose you to be His special cherished possession" Deuteronomy 7:6

How fast life changes!

I can't tell you how many times I wrote in my head a post and just never got around to it. There must have been 20 or 30 written in my head. I guess half of it has been laziness and the other half wonders why anyone wants to read about our problems when this country is in a state of desperation. Yet, I do find that this blog can be therapy and if no one reads it that is fine at least I have gotten it off my chest. Well, a lot has happened in the short time I haven't blogged. Some of the happenings are good others not so much, but we are still chugging along and for that I am thankful. Let me start with the kids: Walker and Zach both finished their freshman year on honor roll. They have been fairly lazy this summer, but at 15 this is most likely the last "lazy" summer of their lives. Early in the summer we forced both of them to attend 24/7 with the church youth group. Basically, it is an at home missions trip. They camped on the grass at church, "showered" outside and spent the week having fun and serving others. Despite the kicking and screaming it turned out God had a plan. Walker recommitted his life and was baptized that week. I had the honor of watching Walker be dunked under that water and the tears couldn't be held back! So, proud! After that both of them endured the "awful" two week vacation down in North Carolina. Instead of staying in a house full of little kids age 9 down we decided to let them stay with my grandfather. Best decision ever! It was a much needed break from routine for my Daddy Bill. He loved talking to the boys, asking what they did that day and listen to them be boys. The boys on the other hand had a whole mountain top to roam free on. They loved it just as much as Daddy Bill loved having them. It warms my heart to even think of it now! A couple days before we were to leave NC I got word that something had happened on the mountain with Zach. When I asked what it was I was thrilled to learn that my grandfather had prayed the sinner's prayer with Zach! I was so proud and happy to know my two sons had chosen to follow Jesus. At 94 years of age I don't think my grandfather felt he could still make a difference in a young man's heart. I made it a priority to let him know God still needs him in this world to make a difference even if it is one person at a time. God Bless my grandfather! My grandmother is dancing in heaven with how graceful he has become in his older years! As we finish out the summer Walker is working as a life guard and dating a girl, (please pray for that one...whew). Zach is enjoying the last of his summer days and will head back to his mom's next week. I have enjoyed having them both home and our family complete. Margaret Ruth is moving beyond the stomping phase. Not sure if she grew out of it or if it was when she stomped and cried I'd tell her I'd give her a reason to dance. I think it was 2 or 3 times before she really understood the meaning of that. She has become such a little lady; crossing her legs in the car, carrying a purse, rocking her babies asleep. It is funny how many times I have heard her repeat my words! Like all of us she was in North Carolina and had a blast. My sister's third child is three months younger than MR and they hit it off. They played for two weeks straight beautifully! Never a mean word, nor a disagreement! My sister and I enjoyed watching them bond! MR also went to "fubs" aka clubs where they tie dyed a shirt, went on walks, went to the pool, sang silly songs, etc She is experiencing what I did as a child. I can only hope she will love Montreat as much as I do. After that trip we had a couple weeks back home, but one week involved Payson being hospitalized, so we packed her up to have camp grandparents. She was the center of attention from Grandma and Grandpa Young! She loved it! She also has a cousin out there who is three month older and they spent a lot of time together having sleep over’s, helping grandma and being little girls. It was such a blessing for me not to have to worry about MR while I was stuck in the hospital. Todd was able to work and come visit freely. All while MR was having fun. Payson - deep sigh...Shortly after my last post we found out that Payson had a new diagnosis of bronchiectasis. In short when he was lying down in the hospital (we assume) some gastric acid refluxed and went into his lungs. His airways/lungs had been permanently damaged....Sigh...In a nutshell this means that Payson has a lung function of a CF child. His life expectancy isn't altered, but he is going to have lifelong medical interventions. They increased his inhalers, added a neb treatment twice a day, ordered a vest and informed me that when Payson was sick they would treat him aggressively instead of passively. They also ordered a vest that would provide consistent chest PT unfortunately the insurance declined it, but I appealed. Anyways, it took me a couple of days to recover from the news. I was disheartened and frustrated that this temporary status had now become permanite. My heart just bled! Yet, as a mother of four you can't be down long so we picked up and I put my focus on the insurance company battle for the vest. After our trip to NC I had threatened to bring myself, Payson, Todd, Walker, Zach, MR and our nurse down to appeal the decision and explain why I felt it would be beneficial for Payson. The morning of the hearing I got a phone call stating that they had reversed their decision and Payson could have his vest. WooWee!!!! I think threatening them with an appearance made a difference, but also that God guided the medical director’s decision. Thank you Jesus! While in NC Payson and my grandfather bonded over the medical interventions they both had. Daddy Bill is old and feeble and there is Payson young and medically dependent. Payson was impressed that Daddy Bill had a vest, so now when he uses it and fusses we tell him "Daddy Bill wants you to do it with him" works every time! Payson enjoyed the mountains and the break from the every day! We were glad to get him home close to his doctor’s b/c he had gotten sick while we were on vacation! Between May and the end of our NC trip it became clear that Payson needed to return to the Ventilator. Without it his O2 levels in his blood are in the lower 90's and they really need to be 95 plus. In stride we put him back on the vent full-time knowing that since we were unable to remove the trach this year that we might as well let Payson really rest while he sleeps. His numbers at night have been beautiful. All he needed was some CPAP. We did spend some time in the hospital and that was well...pointless. The only thing we gained from the stay was that he has some bacteria in his lungs that we can't treat unless it rears its ugly head. GREAT! The doctor is unsure how to treat it without causing Payson to build up immunity towards some antibiotics. So, for good times he put us on Zithromax. It is an antibiotic that he takes Mon, Wed, and Fri. Just another thing to add to Payson's to do list. It was also confirmed that in Payson's esophagus he has a shelf that would cause Payson to get food stuck there. Ahh Haa, we suspected that might be the case. After the hospital we headed off to Ohio for a week and Payson loved every minute of it! That leaves me here at today...It is just another day where I have no complaints but a boat load of prayer requests. If you think of it; please pray for Todd's business. We have hit some snags and need to refocus our attention back on the business.

Hot n Cold

Every time I get on to blog I feel like we either have exciting, hopeful news or heartbreaking news. This entry will not fail in the Hot n Cold theme that engulfs my life. This past week has been one of frustration and sadness for us. Nothing dilapidating but something that took the wind out of our sails. As you all are aware, Payson, was supposed to have his trach out this past week. So, instead of a celebration we had to place hope in a tomorrow. We did continue with his procedures which showed nothing significant. While Payson was in recovery the doctor informed us that we needed to take our time trying to get Payson's trach out and that maybe sometime in the next year we could get it out. One test showed that he does not chew his soft foods, but ends up swallowing them whole. Ahh, ha! That helped solve the gagging/vomiting issue, so now we just use a chopper and cut his food up to fine little particles. As soon as I knew those results I was on a mission. There was nothing holding us back now! He could get the trach out since we had an explanation for his GI issue and confident he wasn't aspirating. So, I told our nurse that I would not leave until they removed the trach. Within the hour my ENT showed up with 2 of her "lackies" to hash it out with me. I gave them my best shot and helped give them a clearer picture on where Payson was functionally at. Finally, she agreed to compromise! She would keep us an extra two days and have him capped 24/7. Then in two weeks if all was okay we would try to remove the trach. I couldn't believe it and was excited. After a quick downsize in trach we capped. He had his sats #'s perfectly! Actually his O2 saturation was higher than it had been all day. We were so pleased and hopeful! As soon as he went to bed we began to see his normal saturation drop...95-90's, but they didn't stop there and continued to decline. After a little while they put him on O2 through a nasal cannula. It was a rough night as he didn't want anything on his face or in his nose, (can't say I blame him there). The next morning we all realized he had failed his trial and we needed to quit before he suffered. With a disappointed heart I had to admit he couldn't do it now. Please remember this kid was scoped down his airway and GI track then had a probe placed down his throat for a whole day. He was not in tip-top shape to be trying anything, so I pushed him hard. Once everyone agreed it wasn't the time we headed for home. Once we got home he just went downhill. Eventually requiring O2, the vent and an antibiotic. I haven't gotten too disappointed I guess I feel like we have to pick up our spirits and carry on for the long haul. So, I just took this sickness in stride and have easily put him on the vent. He sleeps so well and his alarms remain silent at night when he is on his vent! He is getting better but two more tests have been delayed due to this development. Yes, this sucks! No, No, No this blows! Yet, I have no other choice!

The battle

The phrase decannulation (removal of the trach) is cancelled has been on auto repeat ever since I heard those words. Without a tear I managed to listen intently to what the nurse was telling me despite my heart being shattered and being sick to my stomach. I physically ached and even today two weeks later I find the ache ever more present then the first moments after being told. Monday would have been our big day and we will still have to go through the process, plus more testing, but will leave with Payson's accessory still attached to his neck. Our entire stay in the hospital will feel like I am being kicked straight in the gut. Seems a bit cruel doesn't it? Yet, we have no choice but to keep moving forward even with 10 lbs of concrete attached to each foot that moves forward. 

With this latest development it has become very clear that this could possibly be a life long attachment. My "normal" life just might include nursing, doctors, hospitals, trachs, insurance battles, full time medical coordinator/librarian. My body instanly reacts with a dull sickness in my stomach, longing desire ache in my heart and physically everything that contains me screams in begging desperation how I just can't keep going on like this. No way no how can I continue doing this battle. I have gained so much weight that I am embarrassed to be in pictures. When I do take a picture and see it I get saddened that I look awful. Everything I was no longer exsits. I barely recognize that woman with large arms, plump face and a potato sack on for a dress. I feel just as awful on the outside as I feel on the inside. 

So, in my typical Windsor fashion starting tomorrow I am going to give all of this a good ole one two heave hoe. Despite being financially tight I am going to join the YMCA and work off the 50 lbs. I have gained. I am going to stop telling myself that I will start to eat better tomorrow and just do it today. Then on Monday I will take up my cause and as long as his preliminary teats reveal nothing I am going to get the doctors to remove the trach against their wishes. I know my boy and I will not put him in danger, but I also won't let him continue to suffer if there is nothing we can do about his GI issues. So, all of those who believe in my fabulous God please pray on our behalf. Pray that God will only let me crave the heathy things, not over eat b/c of my misery and lose my desire for sweets. Pray that my sweet Jesus will be enough comfort so that I don't turn to food. Pray as I begin this battle that the one I continue to fight will end someday soon. Pray that nothing is revealed on Monday and I can insist on moving forward. If something were to reveal itself within PAysons  body pray it is a quick fix and we can move on. If Gods will is to not have this trach removed during our stay that he give me a peace as to not push our doctors hard. Either way please go to battle with and for us as we forge ahead on the road of the unknown.

This doesn't go into mention the war we are waging with Walkers teenager temptations. He is being typical, sneaky, deseptive and has turned from Christ. He is still my sweet, good, adorable Walker, but he now finds himself in a struggle from the boy he has been to the man he is to become. Unfortunately that man is being influenced by a world that has changed dramatically over the past 18 years since I was his age. The pressures are worse, drugs and alcohol are already a major issue at school and sex is a obscenely common activity as if one were to chew gum. I can only hope that my desperate plea to God that He fill in where I have failed Walker as a parent kicks in soon. I really miss my son and can only pray this is the worst of it. Please be praying for him as we are distracted as parents and he battles worldliness. 

Thank you all for following me on this journey but for also being people that I can turn to for prayer. Thank you!

Comfort of ole brown

A couple years ago after my dear grandmother Tai Tai died the family gathered in her room and went through her closet. There were a lot of clothes and her tiny shoes to donate. There were trinkets from here, there, near and far that held a special memory from the millions of miles she traveled. Enough costume jewelry to fulfill every little girl’s dream of dress up. Of course among the fake was the staple to every outfit; strand of pearls. You were never fully dressed until the pearls draped around your neck! Then somewhere in her goody bag closet were blankets. One was a pink itchy blanket that accompanied her to every hospital stay she ever endured. I eagerly asked for it. It wasn't functional but it had sentimental value. The other blanket was made of a luxurious cashmere with an ugly side; its color being poop brown. There was no story behind that blanket, nothing special that made it stand out, but for some reason I took it because it was my grandmothers and I was grasping at every tangible thing left of her. Since that beautiful June day these two blankets hung in my closet freshly laundered waiting for their next task. When I packed my hospital bag to have Margaret Ruth I saw those blankets I figured I'd continue the tradition and take the itchy feminine blanket, but as I felt it I realized it was just pretty with no realistic function. So, I decided on the poop blanket b/c it wouldn't irritate my new baby’s skin and would be softer than her. Since then every time we enter the hospital I always have this blanket with me. It has become a comfort in times of instability. Has watched me birth two children, sat in the hospital room with Payson for months awaiting my visits and been packed in those emergent rushes out the door to the ER. At the end of a long frustrating hospital visit it brings me comfort to be able to pull this cherished blanket out of my bag and have it keep me warm in these cold hospital rooms. So, as I sit here once again in a cold isolated room I am finding the warmth from trusty ole brown especially nice when all that surrounds me is unfamiliar.

16 and counting

First and foremost.... He has risen, He has risen indeed! Thank you Sweet Jesus for comin on Sunday to redeem us all!

I pray your Easter was as beautiful as mine! In a small town church where older ladies wear great big hats and there is a fimilar hello even if your a stranger, with cousins endlessly playing in a yard with the mountains exploding with wild glorious beauty, the warmth of the spring sun with a chill in the wind all while the adults just sit and be family! Cherished memories and ones my soul thirsts for!

As I leave Virginia taking the shortened drive home I find myself reflecting on a word my mother spoke of; forgiveness. It made me think of all the things I had needed forgiveness for and for my future withdrawals. As I think of my relationship with my mom I think of the one I "have" with my daughter. Not my little princess who is always on the tip of my tongue but the one I have physically ached for 16 long years! Time has eased my loss, but has it heightened hers? Is she one of the ones that I will need to beg forgiveness from since my sin affected her whole life? Does she even think about me? Does she know how much I long to hold her face in my hands? Does she know if I am givien the opportunity that the tears that will overflow my eyes won't be sorrow but relief that God decided to honor me by allowing me to hold her once again. Does she care that she enters my insecure thoughts several times a day? Does she realize how much I desire for my phone to ring and here the words I am ready? Does she know I am here waiting, longing, desiring to meet the young woman she has become? Is she secure enough with herself to be able to pick up the phone to the unknown? Does she know that she was my first real love and has a piece of my heart? Will she ever know what I want her to know; the things that words can't articulate? Will my family ever be complete? The will she, does she, can she haunts my thoughts. So as we head into year 17 I still wonder and secretly hope that tomorrow might hold my first bornes first words to me.

Until then, if it even happens, I will have to use this forum to let her know how I don't regret her for one second. Yes, she was really early in my life, but right on time for her parents. To ask for forgiveness for not using her life as a lesson and get pregnant 7 months later with my son. It was never of I didn't want her but wanted him. It was a matter of survival, I just couldn't survive another heart wrenching adoption. It wasn't that I didn't want the best for them both but that I just couldn't. I'd tell her I was proud of the family I specifically choose for her but would ask for forgiveness for whatever hurts she endured because of me. I'd let her know that every time I look at the stars I find comfort in knowing she is under the same sky as me. It isnt my roof she is under but at least she is under the same sky. Oh and how I long to tell her I love you!

May you know how you have never left my heart!

What a long, strange trip it has been

As I sit here in Payson's hospital room I reflect back at our journey these past few years. It is amazing how time gives you a different perspective and appreciation for what you have been through. In my reflection I wonder how did we manage to juggle everything after Payson was born? It is amazing that as parents we were able to spend several hours a day with Payson in the hospital, manage to run a business and a household. It is amazing that in the beginning of this ordeal we refused to let our lives crumble and that we have managed to keep a "normalcy" in our lives. I stand in awe in my families amazing ability to grab life by the boot straps and carry on.

We all have our contribution to this normalcy, but there is one person who deserves more credit then others...he is the quiet center of our family, one who doesn't need to be acknowledged, but one whom should be. He is our steady rock, our smiling force and the glue that helps keep it all together. He is a person I don't deserve, but the man I am honored to call husband. Through everything we have gone through...a really tough first two years of marriage, blended family, new children, a medically fragile child, betrayal and demands of a business he has remained faithful, loving, kind, selfless and strong. When I lost my humor he found it. When I lost my temper, (and boy do I have one) he was e water to cool me off. When I have had enough he is always there to take over! He spoils me rotten and shows the kids how a real man is to love his wife. Everyday he shows all our children how important they are by stopping to listen to them and spend quality time playing with them, (he is the daddy I always wanted as a little girl! How lucky Margaret Ruth is!!!!) He demonstrates everyday to anyone he comes in contact with how kindness, love and selflessness look like. Honestly, I can't say enough about him; not because he is my husband, but because he is just an awesome human being. One whom I am lucky to know, love and spend the rest of my life with. Todd, you are a saint to put up with me and my antics, just ask my momma how much of a saint you are! You inspire me to be a better person. Your laid back, take a deep breath and laugh at yourself approach to life has kept our family from going insane. I love you so much it hurts and thank you for being you, (and thank your momma). I am honored, privileged and blessed to have you by my side. I don't deserve you, but am glad you thought I did!

Clap, clap, clap...standing ovation my love!

As the world turns...

Can you hear that? Do you hear the sound of the distant drums? We do and everyday they are getting closer!

Excitement is building around here! There are nurses whispering and wondering what's next for them. Phone calls between doctors, hospitals and equipment companies all trying to coordinate the next stage in Payson's care. All the while we are elated with reluctant hearts and scared what the future holds. The day is almost here where I will for the final time pull that life saving contraption out of my son's neck and throw it, stomp on it and bid a tearful goodbye. Can this be possible? Are we really here? Let me back up a month....

So, the last time I wrote we had just had surgery to remove a large piece of skin blocking his airway. After realizing the size of this mass we gained a whole new appreciation for the fight Payson fought just to try to communicate with us. If that skin didn't stop him...Nothing will! It took Payson all of 24 hours to heal before he was acting like Payson. Within days we were able to notice a difference in his effort to speak to us...there was no more effort, he was able to speak easily without breath force. It was exciting too see, but he had more in store for us. Right before Christmas the doctors decided to put in a smaller trach and cap the end of it, (close off the trach completely) and he did awesome!!! In the meantime he was weaning of his ventilator at night...2 hrs. to 4 hrs to 6 hrs. By the first week in January we were off the vent for 10 hrs. He rocked it! Then after a tough battle Christmas week to get him to eat when we got home Todd and I decided enough was enough. If he is hungry he'll eat if not he won't, but no snacks and we decreased his feed at night by 200. Slowly we all figured out that he could eat it was what we were giving him. So baby food was tossed aside and normal toddler meals were placed in front of him...He ate it...ALL!!!! Then one day we got to hear the sweetest thing again; his old man laugh! It is great and he can't do it enough to satisfy my desire! Everyone who has been in Payson's life these past few years we will ask if they have heard it and then Todd and I diligently try to make him laugh. As if those developments weren't enough my boy can talk. Not just babble crap he can talk! He is understood at least 50% of the time by others and 90% by me. I no longer have to interpret his words for people they can hear it for themselves! Not only does he talks he sings and sings and sings! If you tell him to tune it down he just gets louder; as if he is saying I was quiet for so long now you will have to listen! Despite our headaches it is a sweet sound, (but we are beginning to wonder why we wanted him to be able to talk). Then last week after making it to 10 hrs off the vent he went to have a sleep study. Todd said as far as he was concerned he felt it was okay, but the official results wouldn't be in for several days. So that brings us to the here and now!

So, Payson is eating full meals and grazing throughout the day! He is slowly going down on his night feeds thus the end of the g-tube is near too! The official results from the sleep study arrived today and well everything was NORMAL!!! So, now we let Payson cap all day for a couple weeks. Within one short month we should be checking into the hospital where we will bid goodbye to Paysons trach and spend the next three nights learning to live without one! Yes, we are here and yes I am nervous, scared, anxious and emotional over the whole thing but excited no less!

So, the end of our medical nightmare is near!

What was revealed

Yesterday was a very L-O-N-G day! We had to be there by 8:30, but they didn't take Payson back until 12. Trying to entertain a 2 year old in a room the size of a shoe is close to impossible, but we did manage to keep him and us sane. After an hour and a half the doctor came out to speak to us. She informed us that everything went beautifully! She did have to cut open more, about half the perimeter of his stoma (trach hole), then she originally thought which would require an additional day in the hospital. In the end she got the tissue, which was 1 cm, (which is significantly large in a toddlers airway), and was able to view his airway. She was happy with what she saw. She was so confident in his airway she decided to keep Payson off the vent that night...Yup, despite just having had surgery. Then she informed us that she wanted to begin capping trials the next day. If that went well we would go home doing capping trials then in a month cap him during the night while having a sleep study next month. If the results of the sleep study were normal...wait for it, wait for it...we would schedule D-E-C-A-N-U-L-A-T-I-O-N!!! WooHoo, I can finally see the light at the end of the tunnel!

Okay, so that plan is one Todd and I have longed to hear, but getting to that point would prove to be bumpier than we had hoped. First we had to endure the musical beds of the ICU. We arrived in Payson's room to be stuck in the smallest, brightest, loudest room in the unit. Yet, that wasn't the worst thing...the roommate had MERSA! Are you kidding me? Payson gets sick if you breath in his direction, but now you are confining him to a room with el sicko! GREAT! Yet, within a few hours the roomie left and we moved over into the corner of the room with more space! Literally an hour later the nurse comes to me and says, "I have bad news, we are going to move you to the PACU". She mentioned something about a mix up blah, blah, blah. Yet, the kicker wasn't that we'd be moved into another small space with no room and less privacy, but yep you guessed it we'd get el sicko back as a roommate. ARE YOU KIDDING ME?! We just got rid of him! Let me take a step back for a second...You all are so sweet in your encouragement to us reminding us that we are handling Payson's medical trials beautifully. Well, you should have seen the fit I threw last night then you might think differently. It was late, Payson just fell asleep, I wanted my PJ's and to hit the sack, but no no I had to wait another hour to get moved then settle us in just to go to bed. Not to mention the roommate has MERSA! I was furious and everyone heard it! It must have been hilarious to see me ranting and raving then try to be calm down enough not to make the nurses feel like it was their fault. Anger flowed through my veins like hot lava from a volcanic mountain side. Then the tears flowed, pouting and if I had the energy I would have kicked and screamed on the floor. I was so annoyed/angry that the little sleep I was going to have was cut short by a couple of hours. After we were moved, Todd left to get some sleep at home; I sat quietly in the dark for an hour before figuring out I could stew all I wanted but should at least work while I do it. After a couple of hours I could no longer deny sleep. I got the 80's coach/bed prepared all while wondering how many cheeks had sat where I'd lay my head. I pulled Payson's curtain which blocked the light from the hallway, but left me exposed to be viewed by every person who walked through our room. Once I finally fell asleep Payson and our roommate decided to have a battle of the beeps. Then for the rest of the night sleep eluded me with disturbances of nurses performing their work, Payson crying and finally doctors rounding at O dark thirty!

Once morning arrived or let me say once daylight was seen I was up and handling all the doctors and the plans.Shortly after Todd arrived the doctors decided cap Payson's trach. They put this plug like thing on the end of his trach and Payson immediately started crying and dropping his sats. They took it off and tried again a few minutes later only to have Payson do the same. Our hope of having a decanulation date in Feb. or March began to slowly slip from our fingers. It was then that the doctors decided to put a smaller trach in then view his airway. So, we changed out his trach and the doctors took a look at his airway. Within seconds she said the trach was up against a wall, but continued with this trial. So, we waited and watched with hopeful eyes. If you remember we had to have a custom trach made when the doctors realized that the end of the trach was being covered up by a pouch made of loose skin. So, we watched for every sign that it would work. After a little while we realized he was working a little harder to breath. Then we decided to put the cap back on him and he did the same hating every minute of it. So then we did the next best thing and put the passey muir which allows him to breath in through his trach, but forces him to breath out through his mouth. He hated the first try, but once he was playing on the floor we put it on him and he did beautifully!!! So, what does all this mean...that the only one who has the answers to our sons rarity's is God.

Until God decides to reveal all we do have a plan. For the next week, they are going to allow Payson to heal from surgery and not change a thing. Monday, we will begin to wean him off the vent at night 2 hours at a time. We will continue until he is completely off, but the goal is to be finished by Jan. 10 for our sleep study. Then on the 22nd we will have received a smaller custom trach that they will insert in clinic and try to cap then. The smaller trach should allow Payson more room to have a leak around his trach in order to breath properly. If all goes as hoped and we get to the sleep study and the results are normal we can move forward planning for decanulation. Although this might sound exciting, which it is, I am still very doubtful that all this can happen in that short amount of time. Again only God will reveal the real plan until then we keep walking through the open doors around us.

Thank you all for the kind words, encouragement and thoughts, but more than anything for praying for our miracle. We have found much comfort knowing Payson is prayed for by people all over the world! Thank you for walking through this journey with us and caring for the amazing little boy!

Surgery #5

I am sorry I have failed to give you an update on Payson, there are a million and one excuses as to why I haven't. So, the on the eve of a big surgery I am going to give a quick update:

Back in October when Payson was last in the OR, where all three of his new doctors were able to view his airway and esophagus at depth, we found out that Payson would have to have one more surgery before we were able to get rid of the trach. This information wasn't hard to hear, but brought Todd and I an ahha moment. When they scoped Paysons upper airway, (which had never been done) they realized that Payson had developed a form of scar tissue that blocked a majority of his airway. This skin was very difficult to see past, just a tiny opening, but beyond that they were very positive with his airway. As rare as Payson is they informed us he was on the less side of rare spectrum that they'd seen. Comforting...sort of! So, after tomorrow Payson's breathing should be so much easier. After tomorrow a lot more air will go around his trach allowing him to be louder and clearer allowing us to hear his real voice, (or so we hope). After tomorrow we are just a few steps away for having the trach removed for good. But in order to finish this chapter Payson has to endure another painful surgery. They will have to cut open his neck/revise his stoma, which means anyone who tries to get near his trach he will Kung Fu fight them. Needless to say we will be in the hospital for a couple days with a sedated boy. Yet, once we pass through recovery they will be able to begin to cap the trach essentially close it off without removing it. This will force him to breath normally and get him ready for the removal. If he gets sick and has a hard time we will have the trach as a back up. So, we move forward...

We are supposed to be at CHOP tomorrow at 8:30 meaning his surgery won't start until 9:30-10. Please pray that Payson's anxiety is minimal, the surgeon hands are just an extension of Gods, that recovery be easy and fast, we return home in just a few short days and that as parents we be the best advocate for Payson that he could have.

We will keep you posted!

Reality

After two years of living with a special needs child Todd and I have learned the in's and out's of Payson's care. We are so comfortable with his care that we have become complacent. We just do the same routine day after day maintaining the normal so that we can just sail right on through to the end of our "trach" period. (Which after our scope last month we should be capping, which means closing his trach forcing him to breath like normal, by the end of next month...after surgery). Yet, Payson had other plans and wanted us to revive some old unused skills last Tuesday night.

Todd and I had spent last weekend in NC with my family. It was just Todd and I sans the kiddos. It was a fabulous weekend, but that is another post. Because all last weekend was covered 24 hours a day we had to make up hours so last Tuesday night we decided to do the night shift. For us night shift is typically easy we have to get up to add more to his feed answer alarms and suction him, but it is normally 2/3 times a night you have to get up. Pretty easy that is until last Tuesday (12:30 Wed. morning)...Todd and I were both in the office downstairs chatting it up. He stopped mid-sentence and asked if I heard the alarms I said no and went on with our conversation. A few seconds later he stopped again and said his alarms are going off then ran off. Within seconds he was calmly calling me upstairs. Now, usually when Payson's feed has come undone and he finds it he calls me up to help him change sheets, but this time he had some urgency in his voice. When I arrived at Payson's bedside I saw a mother's worst nightmare. My miracle son was once again struggling to stay alive. He was blue, unresponsive and unable to breath. His eyes were rolled back into his head. It was his eyes that took me back...it was the same look of Payson being in there, but he wasn't there, it was the "help me, I am scared" eyes despite that he was looking past me. Tears filled up my eyes and we both jumped into gear. Todd had the bag out and was trying to take breaths for him; I was getting another trach ready for him while calling 911. We did a trach change still not response just dead weight when I tried to sit him up. I put him back down and we bagged again. Todd was calmly, steadily and urgently doing all he could think of to get Payson breathing. We sat him up again and patted his back firmly. Within seconds he threw up and finally he reassured us with his voice. I left Payson with Todd while I ran downstairs opened the door for the paramedics and woke Walker to call Sara. I run back upstairs and the paramedics are on the sidelines letting Todd do his thing. I jump in and suction him. The more stimulation we give Payson we are slowly getting a response. First his breathing was re-established, and then his color and lastly his eyes allowed his soul to shine through. Despite Payson being stabilized he still wasn't himself so we got him ready, (meanwhile cops and paramedics are just watching us do our thing asking if we both had medical training...911 is useless for a special needs child except for transportation.) By the time we got his vent, bags and him ready to head to the ER he was his scared feisty self. I knew he'd be okay when he fought me trying to put him in the seat on the ambulance telling me no and shaking his hand side to side. Todd knew he was okay and that he hadn't been deprived of O2 for too long when he heard the sirens on the ambulance and was in amazement. He was so enamored with this ride that he wanted Todd to take pictures/video. By the time we were at the hospital he was fine. A chest x-ray, EKG, evaluation and 5 long early am hours we were home. Despite the lack of sleep since it was 6 am he decided he was too energetic for sleep and began to play with his sister. Todd and I were emotionally and physically tired. Seeing your son that close to the danger zone and having to bring him back wipes you out. Unfortunately, we didn't have nursing until 9 am so we hung in until then.

As if this wasn't enough...less than 12 hours later Payson was outside laughing and running around like a wild man. Suddenly I hear him screaming. Todd walks in with the nurse and tells me to get ice. When I saw the huge knot and scrape in the middle of Payson's forehead I just looked at the nurse and said I can't do this, you need to take over. I just couldn't muster the energy to comfort him. It sounds mean I know but I was in self-preservation mode; the night before killed me on all kinds of levels.

Less than a week later and all is well. He is back to his spunky, fun self. He even went to church with us today for the first time in over a year. Mom and Dad are okay too. Needless to say one of us remains close to his room so we can be sure to hear his alarms, we also check on him and suction him a lot more and when we hear the alarms we no longer hesitate to see if it stops we go up. Teaches us for getting too comfortable!

I will post video/pictures of the boy soon. I will also blog about our North Carolina trip and give a summary of Payson's medical outlook after the scope! Whew I have a lot of catching up!

Perspective

The other day I had a nurse come in and tell me that Payson was the first baby she cared for that was developmentally normal. Sometimes I focus so much on the muck and mire that we are going through that I forget to look at the real picture!

Thank you Lord, that Payson is a typical two-year old with several accessories! Thank you that he can run, play, hit, fight, laugh, rough house, cry and tell me at each house trick or treating that they gave him CANDY! Thank you for the excitement his eyes reveal when he sees Elmo, his dad or just going outside. Thank you that our journey, though tiring, is only a blip on the radar screen and one day this will just be a memory! Thank you, Lord Jesus, Thank you!

The big reveal?!

As I lay here tonight my thoughts are on tomorrow. My nerves conflict with the excitement that dwells within. One part of me can't sleep excited like a girl going to the first day of school. Nervous that the doctor could delay or that we are left with more questions than answers. I so desperately want this procedure done. I want Payson's new doctors to be able to view the inner complications my sons body has to hold. I need these doctors to dabble with our reality and finally know our sons body. I want to know what lies ahead! Yet emotionally I hesitant because Payson is now aware and terrified of medial atmospheres and anyone he doesn't know in scrubs.

Who would I be kidding if I said that I am being purely selfless in my desire. Ha I want answers! I want to know when/if our life will ever return to our normal. Will they be able to tell us an end date or will they devastate us with a longer stint in this emotional taxing life we lead. I want to know when I might not ever have to worry about Payson getting sick which has become our baseline for him. I want to know is he safe to eat, what can he eat, what restrictions or give the green light. Will the g-tube be a life fixture even after all this therapy because he body can't handle large quality of foods? What is going on in the upper airway that is blocking his exhalation? What caused his vocal cord to be paralyzed? I need not go on as you can see I desperately want answers and we really need them.

I have to trust that it is all in Gods time not mine, but don't blame me for giving the old college try. I promise you that the doctor will have very valid points as to why we should proceed with the OR appointment! Poor man has no clue who he is about to meet tomorrow!

May Gods hand be on Payson tonight and tomorrow, (actually for the rest of his life but one step at a time right now) for His big reveal!

Howdy Ya'll

Wow, did I really let a month and a half go by without posting?! There have been tons of things that happened. Here is a recap:

Payson started the intensive feeding therapy and is eating all his meals now! Yup, we went from eating nothing to everything. He is still a young eater and has a ways to go, but he is well on his way. Eating all his meals also means NO G-TUBE feeds during the days! Yet, that all might change since has lost some weight, but we will see the nutritionist next week to play around with calories and weight issues.

We officially changed our GI doctor from DuPont to CHOP. Love, love, love the new doctor! He took the bull by the horns and has ordered every tests possible. He also helped with deal with Payson's very angry g-tube stoma. We have gotten the results from every test and the gastric emptying study showed that he was a little slow to empty his stomach. This is not a surprise. It also showed that he had some reflux, which surprised us since he had a Nissen (stomach wrap to prevent reflux). The next test that we did was an upper GI study. This showed that he had very little to no motility in his esophagus where he was repaired. We were aware that this could happened, but shocked that this was the first time it was noticed. I think a year and a half is plenty of time to follow up on the recovery phase of his repair. This is why we switched to CHOP. We will follow up with GI and nutrition next week to get a plan of action concerning the slow motility.

Speaking of doctors I have been at odds with my pulminologist. I disagree with his lack of aggression towards my sons constant repository issues. Now, the doctor is excellent and very aggressive which I appreciate, but he is also just doing the typical treat Payson instead of trying to figure out why. So, I am investigating switching pulminology to CHOP too. I have had several people recommend a certain doctor to me, but he is so good that he has closed his books to new patients. We will see, I am still trying to worm my way in!

Finally, we have begun to transition our nursing to another company. We will remain with the one just to keep one of our nurses, but will try the other company to see how they will proceed to fill shifts. The current company is so unorganized, has left us with many holes and told me that trach/vent cases are not profitable. So, before vacation I decided to call the owner of that company to let them know what was going on. Needless to say we had a meeting with everyone and were left just dumbfounded by the lack of respect towards our case. Our son brings them over $6K a week and we shouldn't have to deal with inconsistency. ARRR. The new company starts tonight so we have our fingers crossed hoping this will be a much better fit!

Now onto other family news:

Walker is now an official 9th grader. CRAZY! It is so hard to explain the raw emotions this milestone brings, but I guess disbelief is what it is. It wasn't too long ago that I was in high school and my mom was in my current position. How did I get that old to have a high schooler? It blows my mind and saddens my heart! It is flying by so quick that I am unable to soak in and enjoy it! Time is just slipping through my finger tips! (Let's not mention that my daughter will be 16 at the end of this month)! So hard to believe!

To end Walker's middle school career my boy went to his 8th grade formal. He looked so handsome and made me one very proud momma! He was just a baby right?! Currently, he is down in Va. for the next month hanging out with his dad. They have many years to catch up on and Walker seems to be craving it! It is good for him to be with his dad helping him do hay and work on a farm.

Zach is also an official 9th grader, but we didn't celebrate b/c his school system keeps them in Jr. High thru 9th grade. Next year we will celebrate his arrival to Sr. high! He has spent the last three weeks with us hanging out and helping with the kids. Poor thing is beside himself with boredom since Walker isn't here to buddy around with. In the begging of August he will return to his mom's house and start his year off.

Margaret Ruth...well she is three and every bit of the determined, hard headed, princess that I ever was! (Thanks mom for praying for someone worse then me for me). She is hysterical with her bottom shaking, dancing and singing! She is every bit a drama queen and keeps the house active! Since being on vacation for 10 days, just us, she has begun to play nicely with Payson and Payson with her, (although he won't take any crap from her and let's her know how it's going to be...Oh, dear, not another one!)

Yes, we just returned back from a family vacation! Just us, NO NURSE! It was hard and challenging at times, but it was soooo worth it! We needed it! On our way down to NC we stopped at my sisters to celebrate, Clayton's 1st Birthday! He is too darn cute! After spending the afternoon celebrating we loaded up again to continue onto our destination! We arrived in Montreat at 12:30 am with kids that were wide awake! It was hours before they finally hit the hay! The next day we celebrated me turning the 33. Wow, really?! Again, wasn't I just 16? My husband made me breakfast and my grandfather gave me a little party! It was so sweet! The next day my sister and her crew traveled down to join us. So, we spent the 4th and the week as sisters, cousins, in laws making precious memories! I am so blessed that were able to start that tradition years ago and hope to keep it going for many years to come! The only bad thing was I felt horrible for the boys because we are limited in doing things because of the two little ones! Despite the limitations they seemed to enjoy themselves!

So, as I sit here and type I am gearing up for another vacation in Ohio! This time we will take a nurse for a couple of days so that we can go and do things...cedar point, Kalahari, boating on the lake, etc...We have to fly her back after 3 days b/c that is all Ohio will allow.

Well, that is it for now! I promise to post pictures soon of all the adventures we have had lately!

Thoughts...

It hs been awhile since I posted. The reason for the delay, (besides my life), haven't felt like it. Not that I haven't thought about doing it, but just couldn't muster up the words to put down. I also know that if I blog out of guilt or feeling as if I have too my blog feels impersonal and blah. So, that is my excuse like it or not.

Tonight I was doing the seasonal switch of clothing and as I was putting away Payson's smaller clothes, (he has saved us a lot of money b/c he can wear last years clothes 12-18 months...my tiny boy) and was just reminded of how much I have been robbed. There were some cute overalls that still had tags on them b/c Payson can't wear onesies and overalls b/c of te G-tube. As I went through the baby clothes that he'd never gotten the chance to wear b/c of his extended hospital stay I saw his "coming home" outfit. I remember I spent weeks searching for the perfect outfit to bring him home in I carefully washed it and packed it neatly in my hospital bag. My heart stood still for a minute when I saw it b/c Payson never had the chance to wear it. It was quickly put away only to remain in storage since. Crazy how something so little can bring back such raw emotion. It just makes me realize how much I lost out on. All those first moments, the sweet smell of a newborn baby, napping with the breath of your baby gently caressing your skin; gone, time has stolen it away. It makes me wonder if Payson's lack of affection comes from those missed precious moments. I guess I will have to keep kissing and hugging him.

While I was silent Todd and I saw a rare small blip of time that we could enroll Payson into an intensive feeding program. Last Friday we went and I wanted to jump right in! It is an expensive program (they don't take insurance), but one that has a high success rate. A year ago when I first heard about this program I knew Payson wasn't ready b/c he wasn't behavioral, but had sensory issues. Tides have turned and we have conquered the sensory issues and he is fully behavioral. So, now we try back control and make him eat! In other words a battle of the wills...I can hear the banjo's now! It will be interesting to watch and I have been warned that it will be hard to see. The first few sessions I will be behind a 2-way glass window watching how the therapist gets him to eat. He will cry and want to be rescued and I will have to sit there to watch him struggle with the loss of control. It will take all I have got to withstand this struggle and do it everyday for three weeks straight. After the first few intensive weeks we will only have therapy a couple of times a week and slowly faze out the amount of therapies he gets in a week. The whole program from start to finish should take 3 + months. He might not be eating full on meals, but he will be eating some only to improve from there. I look forward to the end result, but dread the intensive beginning. I am already burnt out, tired and worn down I just can't imagine being able to get us out the door and to West Chester (40 min. drive) by 9:30 everyday for three long weeks. I know I need to do this but my body, mind and soul are depleted of everything I have.

I keep trying to tell myself that I have it easy compared to...but I feel as if I am robbing myself of the right to be exhausted. Not that I ever had much patience, but of late have found myself closer to my breaking point then ever before. My mind is fried that making simple decisions just seems to be impossibly complicated. Then to run errands or keep up with what little life I have just exhausts me at the thought. I know what all yall are thinking...that girls depressed! Yes, I probably am or maybe it is the place I am in my life's journey! What I wouldn't give to for a complete break for just a few hours, no kids, no responsibilities, no therapy's, nothing demanding my attention. Ahhhh...No shirt, no shoes, no problems! Someday soon!

Please pray for us as we embark on this program and the intensity of it all. Not only is it hard on me, but hard on everyone in this family. Everyone gets disrupted! Please pray this is successful for Payson and that we don't have to temporarily relocate to attend another feeding clinic. Thank you for supporting our family now and back then!

Funny thing is....

It has officially been two weeks since the wind was blown out of our sails. Although the disappointment still lingers we have carried on with our daily lives. It's funny how the world doesn't stop because you had a bad day, need a moment to catch your breath or need a five minute reprieve. The world will always spin, people will continue on with their lives and will not slow even for a split second. How I wish it would! I just want time to soak in the things that have happened these last couple of years. I want to have time to be upset before we get hit with more potentially upsetting news. I am tired and feel pushed to keep moving when all I want to do is be still. Although that is my desire i can't have it no matter how much I long for it.

So we put one foot in front of the other and march onward! I think the hardest pill to swallow is having the nurses an additional length of time. My home is no longer my safe haven but a revolving door of many different personalities. Most of them have lost respect that they work in someones home, care for a loved child who is part of a family unit and needs to participate in a normal fashion with their siblings. We have had nurses isolate Payson in his room, get annoyed with even angry with Margaret Ruth for behaving like a typical sibling and be intrusive in my relationship with my husband. I get so angry when I see it happening yet I do nothing. My heart aches for Margaret Ruth as she is only 3 and doesn't understand why Payson has someone everyday to devote their entire day to him or why so many people come to visit and play with him or why he gets to go play at therapy. This senecio is hard to watch and I say nothing because I am too exhausted to fight that battle. I feel lost in a dark hole unable to protect all that is precious to me...my home and my family.

One night last week Todd came home to find me crying, which is a rare sight and knew that I was over all of it. So, after his business trip this week we spontaneously cancelled the nursing shifts for the rest of the week and headed out of town with the two little ones in tow. Even though we aren't at some resort relaxing on a warm sunny beach, but are in Ohio where spring hasn't made an appearance and winter still has a grasp it is away! Away from our nurses as a smaller family unit ( theboys had other plans) away from most everything that makes us frustrated. It has been delightful even in the cold rain. Just the thought of going home to nurses on Monday makes me cringe.

Despite my lousy mood I have spent time reflecting on what today means! I can not believe the king of kings died for me this cosistant sinner! Oh how fortunate I am to be able to follow him and love him!

Happy Easter and know our savior is alive and well!

Heart full of disappointment

As I sit here my heart is somber. The house is our version of "normal" with the younger kids asleep, the older kids watching TV, Todd & I sitting on our computers and the hum from Payson's machines fill the air. Tonight the hum seems to be louder than before; mocking me that they will over stay there welcome. The alarms seem to sense our desperation for quiet and peace by reminding us this isn't over with noisy beeps. All the equipment, supplies and stuff associated with our medical nightmare is unusually over crowding our space.

All the hope and wishing that I had this morning, gone with one view. 3-5 minutes is all it took to sadden my heart. All my dreams of getting my life back dissipated with one sentence, "It is my proposal that we cancel decanulation in May and we take another look at his airway in August." Over the past couple of weeks I had prepared myself for the "in case", but found myself ill prepared for the reality of it. As the doctor continued to talk about Payson's airway I tried to listen intently, but didn't hear a word because I was mightily trying to hold back tears. I nodded and shook my head as he told me to continue with plans for the sleep study on Monday and that he will cancel the OR in May, blah, blah, blah. While being lost in my sorrow as he continued to talk I broke his words with, "after seeing his airway what are our chances that we will decanulate in Aug?" His reply was he didn't know.
When I pressed him again for a percentage he looked at me and said, "What I mean is I really don't think it is likely." As mere moments passed I wrapped my head around his words, nodding in agreement as tears overwhelmed my eyes. It must have been difficult to watch this mother have an internal struggle that was boiling over into my eyes courageously trying to keep my composure. Finally it was all too much the tears began to flow as I buried my head in my hands. After a few minutes flooding my face and wailing in heart break I pulled myself together embarrassed I'd shown some vulnerability. As we finished our appointment Payson kept looking at me strangely it was after a couple more tears escaped my control that I realized my son had never seen me cry. I never once let him see me cry over his condition. I never wanted him to feel as if something was wrong with him, but as he sat on his dad's lap he looked as if he was saying, "hey she cries too?"

The afternoon has been spent in sadness, not dispair, but a grey cloud of sadness. We are having to re-adjust our thinking from a month from now to a year from now. I am having to let go of the desire to just get in my car and go with the kids in tow; no bags,vents, nurses, nothing medical just go. The hope of a summer vacation as a family alone is lost. The possibility of nice relaxing cruise is out of the question. Visiting my family with just the younger two gone for the moment. All my plans without are now gone. We desperately looked forward to not needing nursing and being an average family now we must buckle down for another long year. There are no words...In the last few steps of our race the finish line diminished before our very eyes. Leaving us exhausted, stunned, heart broken and desperate for an end.

Not your rose colored glasses...

Tonight I am in a mood! Not sure why or what the cause of it is, but there is an internal struggle of angry raging within. I guess when you boil it all down I am exhausted, pissed off, frustrated and disappointed. Every time I get in this mood I always turn my thoughts to another family who has it worse than I do. This is a wonderful way to broaden my horizon and look beyond myself, but tonight I don't wanna! I want to sit here and focus on my suckage, pain, misery and annoyances! I just want to have the right to feel what I feel and for it to be okay with the world just for a moment!

My husband, Mr. Optimistic, can't stand posts like this. He always finds the good any situation! Not me!! There are times I just wanta be miserable. His outlook on life causes me to be frustrated eventually leaving me disappointed at myself. I want to see the rainbow, but I also want to mourn the losses of things too. I guess I feel as if I am not allowed to grieve what I have lost. By no means does Todd intentionally make me feel this way quite the contrary. Yet, his positive outlook can really dampen your depressed state of mind.

Part of this black cloud stems from all the frustrations that come with having a medically challenged child. The nursing agency is a full time drama fest. It is CRAZY! One nurse doesn’t want this, another needs to move this, the other can't do that...ARRR. I have bent over backwards to accommodate and welcome these strangers in my home. I have even turned a blind eye to a nurse not doing their job b/c I like them. After the phone call I got from the nursing agency yesterday basically saying we had numerous open shifts and that a nurse wants this...I am D-O-N-E! I have made our home so easy to work at that I feel taken advantage of. So, after that phone call I realized that this is just a job for the nurses and they are going to do what they deem best for them, not us! Move over nice guy, Ms. Thing just arrived! I am going to insist on what works for us from now on and there will be no blind eye! I look forward to nursing not being my problem!!!! Our home, our rules, our discipline and no one else!

Over the course of the last couple of months I have realized how much I missed out on in Payson’s life. We never got to bond those first few moments of his life, he never knew his siblings until he came home 6 months after his birth, he never knew mom & dad to be in one room or what it was like to sleep in our bed. The list of things he/we missed is endless! It deeply saddens me to realize how much we lost while we eagerly waited for Payson to grow. We wanted him home so bad we wished his babyhood away. There are times when I see a mother with her baby when my heart cries for the loss of a typical first year with a baby. Geez we missed so much! Although, I got one "happy" childbirth experience I wished I could have gone out of the childbearing stage with another one. Quite frankly, I am angry I wasn't given that opportunity wasn't my first daughter enough? Did I really have to add another heartbreak to my life story? Honestly, I can't even begin to describe the frustration and disappointment I feel inside because of typical infancy happiness that we were robbed of.

This is my life...

Todd arrived home safely tonight after two days away. The kids and I have started a tradition to hide as soon as he pulls in the driveway so that he has to find us, (hide-n-go seek is a favorite lately). Unfortunately, Payson isn't the quietest kid between him yelling daddy and then his normal breathing he is a dead give away! I wish I could video the kids faces every time they see daddy after a couple of days...PRICELESS! The light that radiates from their faces and they are so excited to see him! It makes my heart smile! Here is some videos from our night of daddy and the kids playing. *Notice Payson doesn't walk, but sort of runs into a room...like Kramer from Seinfeld sliding in the door, (Payson's hair matches Kramer's too).