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!