6 months, Today

Six months ago today our hearts literally broke.

Someday I will get to writing about that whole experience, someday.

Today, I miss Paxton. With every cell of my body. I ache to hold his body and kiss his cheeks, ear, on down to his neck; stroke his hair; and feel his hand on my face. I miss seeing him wake up so happy and look towards the window, as if it would tell him what kind of a day it would be. 

I miss him always being there, with me. On the floor. Putting him in his rocker, wheelchair, bouncer, high chair, or walker. I miss rolling the ball to him, him kicking it back to me, or picking it up and rocking it next to his face. The most gentle blissful smile.  I miss his beaming eyes. Miss helping him to stand, roll, rock, reach, and play.

It is quite an interesting thing when someone you love so much and spend every minute with passes. It is a difficult cross to bear. Time seems like forever. It already feels like forever since I held him. And feels like an eternity before I will hold him again. I know that is not true, and of course I am so grateful for the knowledge that I do have, that the only thing that will be for eternity is actually being with him. And my other boys and Dave and all our great loved ones here and there. That is what eternity is, and I hold on to that.

Both in Paxton’s life and death I have been nudged to see the more eternal perspective of things. Of this life. Of our cares and worries. Even 6 months later, I have been trying so hard to work on his photo books, putting his videos together in some sort of place for them to live on, in some order. It is hard. Hard to get the time to do it with two other youngsters running around; hard because of the emotion it enlists, especially to be interrupted all too soon and have to cut off that core emotion so abruptly. But I also know having these kids is what keeps me going. You have to. ...Still, even with how important those good “things” (projects) are that I want to do, I have come to realize that even they (as important as they are to me), are just things. They are not Paxton, himself. I could work all day on those treasured memories, giving them a place to rest with us forever, but my house could burn down and I could lose everything and all that really matters is my family. Just like when Paxton was here, with Paxton, it’s the relationship that counts. Not things. Not even good things that we make or read or do. People matter. That’s why I have to take it all in stride, in such careful balance. Two days ago Camden asked me to come play out in the snow with them. I realized it made me feel so good to be asked, and there was nothing better I could do with my time. And I was right! It was so fun for me, too! Sledding and having a snow fight was just what the Dr ordered! I had just come back from California the weekend before- so beautiful and refreshing and I felt like I could see and feel Paxton in every butterfly, hummingbird, and sunset. Then, as I was playing with the boys outside, the sky here was so glorious. The sun setting was as breathtaking as in California, and I just felt such a surge of gratitude. Life is good. Life is so beautiful. Life and Time with those we love is all that really matters. It is such a blessing and a gift! I know there are so many good things to do, even better things. But I’m convinced that the best things have to do with people, the relationships in our lives. Whether it is with God, our family, our friends, ourselves, nurturing our Spirits is all we can take with us and all that will really bring us fulfillment, even here. I am living experience of learning this. I’m grateful God is still teaching me. I know He will. I want so badly to feel His presence, and to feel Paxton’s presence. I know he is busy.

I’m not like other moms who have seen their child who has passed (in a vision or dream), having such a peaceful experience that gets them through any hard moment. I wish I was. I hope to become one of those moms. (Really, really bad.) But it may not come. It may be part of the test. I remember that I am loved. I know God loves me, that’s why He gave me these precious souls to live with. I know Paxton loves me, that’s why he came and stayed so long (one of the many reasons). So it’s okay. I have to trust in God, and I do. I know where Paxton is. I honestly don't even doubt it. That's not what's hard. I know he is busy doing such good things, ministering to even more people than he could here because of mortal limitations. I know he is blessing all of those close to him. Sometimes I am the lucky one to feel him. But he is very busy.

It has helped me so much, since just after New Year’s, when I got a sweet card from my niece. She told me all the ways she misses Paxton, too, and finished it off with, “I know it's hard, but at least he was yours to remember.”

Wow. Out of the mouth of a child. I am SO grateful and humbled that Paxton is ours to remember. That WE had him to live with us and teach us so many beautiful things about life. I miss the part of me that is no longer working in that way, that is dormant, the feeling that came from taking care of his precious body and spirit every day. It was such a blessing and a gift!! He was so perfect and peaceful and still. His body was active but his spirit was so still. He spoke so many sermons without ever saying a word. Oh, I love that boy so much. I miss the great, strong, perfect way you loved. I miss who you made me, Paxton, and I miss you so much! 

So today I (need to) choose Gratitude. I love my little angel so much and miss him like crazy. I miss everything about him and caring for him, even lifting that blasted heavy wheelchair into and out of the back of the car. ☺ I miss you and still cherish you, Paxton, every bit of you. My heart swells with gratitude for the gift of getting to live with you for three years! I am so thankful. Thank you!!! I love you, sweet sweet boy. Happy six months to you in Heaven. ☺ I hope it is as perfect as I imagine it is for you. Love you. ~Mom

Peace

As much as it feels like everyone in our immediate world knows this, there are some readers who I know do not. Our precious son, Paxton, passed away on July 17. You can read his obituary here. 

I have wanted to get on here since to share SOMETHING, ...but which of the constant flood of thoughts or many emotions do I choose to share??? Where do I begin? This will not be by any means all-inclusive, but perhaps satisfy the demands of my heart to share ...something. 

First,  I must say thank you. Certainly to everyone reading this, and to many others as well. For the sincere and continued prayers, love, and support of Paxton, our family, and the journey we have traveled for the last three and a half (pregnancy) years. I'm so grateful for everyone who has helped us, and especially those who really shared in the "knowing" of Paxton and who he is, with us. I have felt their love as we have witnessed them mourning the loss of his treasured presence alongside us. 

Our life changed so much when we learned of Paxton's challenges in utero, when he was born, and now with his passing it is completely changing again. At first we mourned the loss of a normal, healthy, full life. The things he wouldn't do as a child, the things we wouldn't do as family. We came to accept those and deal with the circumstances as they were, certainly making the best of all that we COULD do. Now we are mourning being separated from that beautiful, perfect, innocent, happy, hard, special-needs and special blessings life. ...We are sad to lose the opportunities and blessings that having Paxton brought to us. Perhaps it is like being released from being a bishop, a missionary, any calling that you absolutely treasured that unique time for. Although it was hard, that is what made it so special and the blessings of the effort given so abundant. ..What made it so hard to say goodbye and to rearrange the time and efforts of your life, taking what you have learned and putting it all into action in new ways and allowances.

We miss Paxton everyday. We see his toys and his walkers, his equipment and supplies, his favorite blankets, toys, and spots to sit and play in the house. Where we would see him when we walked in the room or (for Dave-) in the house. Where we would pick him up and throw him in the air and tickle him all over. We long to see him there rocking and twisting, looking up and reaching out. I wish I had a perfect video in my head that would never forget one detail- one pixel of his face or one frame of his movement, that I could play back at any time. That I could perfectly see him lifting his chin and tilting his head back as a huge grin spreads across his cutest little face. How his eyes danced as he smiled at who knows what (or who). And yet maybe a perfect memory can't be afforded because it breaks my break heart when I let myself go there so deeply. I can't believe how much I love and would wish to hold a body! Truly I never knew. Even in burying him, touching his body wasn't the same because his spirit had already gone. But, oh how I miss touching his simple body, skin and hair. It was all so perfect and beautiful to me, and I felt so lucky to be the one to take care of him and bathe him, hold him and carry him. Never once did I hold him without all of his attachments, until after his spirit had left his body. I can only imagine the intense joy that will exude from my body when I can finally hold him- body and spirit- after the Resurrection. Suddenly this blink of life seems a bit long to "endure to the end".   

I'm feeling like I can go a couple of days with being pretty positively focused on the boys, the house, responsibilities, etc., but then comes a point where I just need to let myself sit and 'go there'. To feel what I need to feel, cry like I need to cry, and just plain miss and think of him. As sad and hard as it is, you want to remember so much every detail. You don't mind the sharp pain because it means you are remembering. Even still, I have learned it is good to be busy, with what I call "healthy distractions", to not "stay" in those hard, long, and sad moments. I know where I draw my strength from and after searching in the scriptures and talks from others on the topic, I have the hope and peace I need to get up and go forward again. These things really help me and I am so grateful there is such an availability to find what we need so easily. Luckily, I have a spirit that once it learns and feels something deeply, it stays with me, and I continually build upon it. So the strength I derive sustains me until it hurts again, and then I build something upon what I learned and felt last time. 

 I know where Paxton is. I know he is happy. That death was sweet to him and we will be with him again. That he would be sad and confused to see us so sad over him ...being in Heaven! I can just envision him whispering to us to remember, "But you know where I am, Mom. This is not sad at all! Thank you for loving me and caring for me while I was there... Now just keep going strong so you can come be with me again. All of you. You will love it when you get here; It's worth it, I promise! It will be here in no time!"

Sometimes, no matter what you know, it is still just plain hard going through it. But for the most part, I have felt blessed with 'eternal perspective glasses' that have brought great clarity to my life. They give me personal fortifying peace and strength. A motivation and desire to "hope for the things of a better world" and to use this time "to prepare to meet God." To give my living children opportunities to feel the Spirit, choose the right, and feel loved and connected to us everyday. These are the things that are most important, and I never want to forget them.

A couple weeks ago on a night when grief hit me hard, I found a talk entitled, "The Doors of Death", by Elder Russell M. Nelson. It helped me to realize there are more reasons to rejoice than to be sad. Do you know what a gift that kind of incredible awareness gives?! I felt so strong and even happy. I immediately wanted to share with Dave all that I had learned and felt from it's words. I share with you these words that have helped me so much in dealing with this "Birth we call death", this "passing" from one life to the next, this transition we have to make of learning to live with a loved one separated for a time, on the other side of the veil. From the brilliant words of Elder Nelson:

 Death separates "the spirit and the body [which] are the soul of man." (D&C 88:15.) That separation evokes pangs of sorrow and shock among those left behind. The hurt is real. Only its intensity varies. Generally the younger the victim, the greater the grief. Yet even when the elderly or infirm have been afforded merciful relief, their loved ones are rarely ready to let go. The only length of life that seems to satisfy the longings of the human heart is life everlasting. 

 Mourning is one of the deepest expressions of pure love. It is a natural response in complete accord with divine commandment: "Thou shalt live together in love, insomuch that thou shalt weep for the loss of them that die." (D&C 42:45.) 

The only way to take sorrow out of death is to take love out of life. (!)

 Eternal perspective provides peace "which passeth all understanding." (Philip. 4:7.)

We were born to die, and we die to live. (See 2 Cor. 6:9.) As seedlings of God, we barely blossom on earth; we fully flower in heaven.

 Scriptures teach that death is essential to happiness: "Now behold, it was not expedient that man should be reclaimed from this temporal death, for that would destroy the great plan of happiness." (Alma 42:8; italics added; see also 2 Ne. 9:6.)   (!)

 Our limited perspective would be enlarged if we could witness the reunion on the other side of the veil, when doors of death open to those returning home. Such was the vision of the psalmist who wrote, "Precious in the sight of the Lord is the death of his saints." (Ps. 116:15.) 

 Mortality, temporary as it is, is terminated by the doors of death. Questions then come to searching minds of those left behind.  While many questions cannot be fully answered with available knowledge, much is known. ... (see talk for more details on what happens after death, where the spirits go and what they are doing.)

 Meanwhile, we who tarry here have a few precious moments remaining "to prepare to meet God." (Alma 34:32.) Unfinished business is our worst business. Perpetual procrastination must yield to perceptive preparation. Today we have a little more time to bless others-time to be kinder, more compassionate, quicker to thank and slower to scold, more generous in sharing, more gracious in caring. 

 Then when our turn comes to pass through the doors of death, we can say as did Paul: "The time of my departure is at hand. I have fought a good fight, I have finished my course, I have kept the faith." (2 Tim. 4:6-7.) 

 We need not look upon death as an enemy. With full understanding and preparation, faith supplants fear. Hope displaces despair. The Lord said, "Fear not even unto death; for in this world your joy is not full, but in me your joy is full." (D&C 101:36.) He bestowed this gift: "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." (John 14:27.) 

 As a special witness of Jesus Christ, I testify that He lives! I also testify that the veil of death is very thin. I know by experiences too sacred to relate that those who have gone before are not strangers ...to us and to you, our loved ones may be just as close as the next room-separated only by the doors of death. 

 With that assurance, brothers and sisters, love life! Cherish each moment as a blessing from God. (See Mosiah 2:21.) Live it well-even to your loftiest potential. Then the anticipation of death shall not hold you hostage. With the help of the Lord, your deeds and desires will qualify you to receive everlasting joy, glory, immortality, and eternal lives. For this I pray in the name of Jesus Christ, amen. 

I love these words!

Yesterday I was able to share my testimony. I felt this burning desire to share with the youth, those who have prayed for Paxton for 3 years, and seen him get better, time after time, in accordance with our faith... I felt like it was so important for them to know that because Paxton didn't get better this time doesn't mean that God doesn't love us, or that we didn't exhibit enough faith, or that He didn't hear and answer our prayers, or that we weren't "blessed" because Paxton wasn't healed this time. (Ironically, the day our family and friends fasted for us was the very day Paxton passed, and I KNEW, even before the fast began, that their prayers and faith this time would be to help us to accept God's will for Paxton.) Sometimes it takes more faith to not be healed, than to be healed. Paxton was going to return home this time, and that was simply because it was God's will and God's appointed time for Paxton. Paxton had accomplished his mission here on this earth. I believe even the time he was allowed to stay with us was an incredible gift, that possibly it was even longer than originally planned. And even if not, what a gift his 3 years have been! They have changed us all and made us want to be better. To do God's will and follow His plan. To celebrate the simple beauties of life and to joy in the love we feel one for another.

I'm so grateful for God's love for us. Isn't it amazing that without death we could never have a fullness of joy? It is a necessary part of the plan of Happiness! We are not meant to live here forever. It's not our eternal home! One day we will all go there and see and feel and remember all that we knew before and be so glad we did everything in our power to return there. I know this is true. I know God loves us and sent his Son, Jesus Christ, to suffer for (that thereby He could suffer WITH) us, to die for us and overcome death on the third day (yes, there is really something special about those 3's). I'm so grateful there is a merciful God who knows the details of our lives and will guide them if we want Him to. I'm so grateful for a grand reunion and Resurrection that we can be together again, and not only feel each other's spirits but embrace fully, both body and spirit, those souls we have since lost and loved a while. I love this Gospel. I don't know how I could function and breath so happily without it. Life would certainly be full of despair and not feel very worth living at all. I'm so glad I know there is so much more than that to offer, a truth which brings that "peace which passeth all understanding." I wish to share it with the world, and that is why I venture to leave these words with you today. I know God, the Father, and His Son, Jesus Christ, LIVE, and that because they live, we shall live also. I share these things with you in the name of Jesus Christ, Amen!

Progressing in 2013

The Norton Family is doing great. There have been a lot of exciting and happy moments in the last 9 months. We had several surgeries last Fall, but made it through the winter unscathed. Pax did have a little setback at the beginning of May but has since recovered and seems to be doing well now. He is as happy as ever and so much fun to interact with. 2013 has brought Paxton a lot of changes so far:

A new wheelchair.

An incredible hearing aid that Pax can wear around his head instead of in his ears.

Horse-back riding therapy.

Being outside more, tolerating outdoor light better (with hat and sunglasses).

1st road trip! To St. George for Spring Break! - Paxton's first time hiking. Put his feet in pool, an napped afterward like he had swam the length of the pool. :) We felt so normal and think he did, too. 

The boys fight over who gets to push him in his wheelchair or carry one of his bags. They love to push his med syringes and both have fun holding him and making him laugh. 

Paxton loves grabbing people's mouths and hair. Touching your face is his way of discovering you. But as he gets older I hope the mouth fetish goes away a bit. :) He likes to grab onto mine and Dave's mouth like a fishing hook. Not so fun when his nails need to be trimmed, which is very frequently.

He IS a ball-boy! (Just like his daddy prayed for.) He LOVES balls, especially his white baseball. Whenever he sees it he just beams and can't wait to grab it and hug it to the side of his face. He loves pushing balls back and forth on the ground to whoever wants to play with him. And he loves to kick the ball when he is in his walker. We may have a special olympics soccer player in training here.

Paxton just got a new stander, courtesy of his awesome older cousin, Carson. Pax loves to watch a show in it and bang on the tray. It helps him bear weight on his legs so he can get stronger when he tries to stand outside of the stander.

We just saw Ephraim's Rescue and Pax was sitting on his blanket rocking through the whole movie, and loving every moment of it. It was so cute, when there was a big spiritual moment, Paxton would laugh! ...I would cry; he would laugh. I love his way of expressing his joy. I think he knew something was up because he was just so happy at those miracle moments. Afterwards he got to meet some pretty special people who have been praying for him since he was born. He even got a kiss on his forehead from President Uchtdorf. Talk about a loved little guy. 

Just last night we were treated to an amazing evening with the Salt Lake Bees, thanks to the loving service of the Sons of Baseball Foundation. Wow, everything was so first class and top notch. We felt spoiled and special, and much like with the BYU football team last Fall, Paxton LOVED every minute of being there, outside, on the field, hearing the ball crack against the bats, and getting lots of attention and smiles from players and friends the entire evening. 

Deseret News

KSL Sportsbeat

Sometimes I feel embarrassed for the attention that we get at these types of events; I'm sure there are many we know who are sick of seeing us have these 'special experiences', but then, we have pretty awesome friends and family who support us and come anyway. It is so fun to share it with them. The memories made me smile today when I was loading and unloading Paxton's wheelchair and equipment in and out of the car and his dr apts today. Sometimes it is a lot of tiring work, but it is so fun to have those magical moments that keep your family going for a long time. 

My three favorite moments were seeing Mackay getting to place the bases down on the carefully groomed sand, and then continuing to pounce on them quite un-cautiously; Camden out with the grounds crew spraying the field with the hose; and of course, Paxton rolling his favorite stuffed baseball down the pitcher's mound to the Bee's catcher, just about 4 feet away. It was the cutest thing. The Bees were amazing to us, in every way. From custom-made jerseys, to pre-game field, dugout, locker room time with the players, a signed bat and ball (from the away team, too!), great ballgame food provided, and amazing kindness shown to us from every level of the park at every step of the evening. We are big Bees fans now and will smile at the thought of that day for a long time to come. Thank you, Bees, and SOBF. 

Recovery, Whining, and Blessings

I'm so bad at getting on here. Argh.

I am sitting up here at PCMC, while Pax is finally peacefully sleeping, and I have had a chance to read some of the most inspiring blogs by other special needs moms (Summer-always overcoming so much, Rian- her quick, helpful, humorous posts, Shannon P -always makes me laugh, April-makes me cry)... Wow! I love the blogging world in all of the good it can do; what a great way it can be to share wonderful and powerful learning experiences with others, strengthening them in the process. So I am thankful to those mamas!

Our Pacman is recovering from some surgeries he had last Tuesday. At first I thought his recovery would be smoother than most, because it seemed his pain was so well controlled the first day and half. But since then we have continued to see other complications, as usual. High fevers up to 104.2, morphine not cutting the pain, sedation not cutting the agitation, blood in stomach, etc. etc. With Pax after surgeries, so often we realize an infection has brewed but it is such a puzzle to find out where it is ocurring. For the past week, he wouldn't open his eyes, and would literally kick and thrash back and forth constantly on the bed all day and much of the night. He was so swollen and his eyes so puffy, that now they are cracked and peeling. These recoveries are not my favorite. Even when you have "scheduled" surgery and can plan and prepare, knowing you will be here for at least a week, the going through it is still so tiring and draining. I hate to not be able to do anything to calm, comfort, or even decipher his pain. Thankfully, today I feel we are on the path to ending that phase of this process. Though still wincing and rocking, he has much calmer periods today, I can hold him again, he is opening his eyes, and he has given me a few smiles. Yay! We have had 24 hours now without a fever and now we are just waiting for some bowels to get moving and tolerating feeds again. Whatever the antibiotic and pain meds are helping, they're working. Yippee! I'm hoping and praying we will not see another virus or complication before we get to go home.

Being in the hospital always makes me super contemplative. It becomes so apparent at these times where my efforts are failing, what my kids need more and less of, how Paxton has changed our life- the good, the hard, the reality; how hard we have to work to get to spend any time together, and how blessed we are in terms of our support group and also the situtation we find ourselves in with Pax.... I am always reminded that someone always has it worse- not that I want them to! I don't wish those things on anyone, especially these little tender hearts housed in children. It is just such a dose of perspective every time I'm here.

And yet, (Stop reading here if you don't want to hear a special needs mom whine - wah wah wah!) sometimes I am surprised by how many doctors and nurses I know here, some on a first-name/cell-phone basis, always passing in the halls or at the cafeteria, maybe embarrassed that I know them so well that I stop them when I see them even outside of a clinic appointment. I know more about this "life" up here at the hospital than I ever thought I would have. "Primary Children's Medical Center" used to be such a lofty and scary term to me, a place reserved only for where children went when something is seriously wrong or a child is seriously sick, where someone is life-flighted or taken by ambulance after some life-threatening, horrible accident (both of which we have done more than once). It is out-of-body like to realize this has become such a continuous reality for us, a process we know more than we would like. I know most of the guards, cafeteria workers, same-day surgery workers, hospitalists, and the head of almost every specialty/department. Um, is this my life?! A couple weeks ago I got to go to a girls' night and we stopped at TJMaxx afterwards, ooh yes, and as a friend was holding something up for me to see, I realized how sad it was that in deciding if I liked the cute sweater, I was picturing myself in a doctor's office and walking up and down the halls, maybe in and out of the cafeteria, at PCMC..."Would that be comfortable, simple, cute...?" Ah! PATHETIC!

I cannot lie - sometimes I do miss feeling "Normal." (I hate the term, btw.) It's hard not helping in carpool, getting to know the other moms and my kids' friends as well, not being able to attend birthday lunches, dinners, and activities as often as others because I can't get a nurse for that time, taking forever to pack up and unpack the equipment, meds, and wheelchair to go anywhere, not having my kids signed up in every itty-bitty sport because there is no way we are making it to all of those activities, and even being left out of/not invited to things...me or my kids, and wondering if it's because they just knew I couldn't go anyway and "didn't want to make me feel bad", or maybe they didn't want to carpool my kids to that sport if I couldn't take them myself. Blah blah blah. If I do have a nurse I'm so calculated in my "hours" that I have a hard time just relaxing and doing normal things like talking to a neighbor or watching a show. I feel like I have to get done as much as possible in and out of the house in that time that I'm sure I'm missing some of what I'm supposed to enjoy just by having that break time anyway! I worry constantly about Paxton and his needs, his therapies, medicines, emotions, attention, and yet my other boys need it just as much, if not more, and yet it is often harder to give it to them. (Because they are the whiny, fighting ones, you know, and Pax, albeit needs and all, is just sweet and silent! Although sometimes I do want to take his sat monitor our for shooting practice.) We are constantly checking the monitor, starting and stopping food and meds, suctioning, trading on and off, and packing him up and downstairs to be with us.

Enough! I am grateful he is not vent-dependent. I am grateful he is playful and interactive and oh-so-smiley. I am grateful we have home nurses!! I am grateful I have an amazing husband who really lives to make us happy and spend time together, and who helps me a ton with the kids and the home. I'm grateful for our helper, Crystal, who is amazing and helps me with more than I deserve!! I'm grateful for my mom who is completely trained with Paxton and helps out whenever she can and probably does a better job playing with him than I do! I'm grateful for sweet neighbors who call and text and ask me if they can come get a Paxton-fix for a couple of hours (while I get a break, too)- Love! I'm grateful for KIND therapists who are gentle and yet so helpful in pushing me and Paxton to work harder. I'm grateful for amazing insurance and for the amazing Stephanie Carlson who took her trach-vented, oxygen-dependent, g-tube fed child to our state's capitol day after day until they recognized her need for help, and then created the Blessed Travis C. Waiver that gives these technology-dependent kiddos in Utah some respite and help. I'm grateful for my counselor, Wendy, who comes every two weeks for two hours to talk to me about all the challenges that are common to these families with special needs and chronic health conditions, who helps me feel normal (in this category), buoys me up, and instructs me where she thinks I can do better. So many pieces of all the good things that help us get through the day-to-day. I'm grateful for the Mormon Channel, I LOVE listening to the Conference talks and hearing the words from the speakers' voice, as it was given; listening to "Enduring it well" and "Conversations"... There are so many amazing and inspiring people out there that help me to count my blessings and buck up a bit on my drives to and from Primary's. I'm grateful for the people I have met at PC, the other trach/gtubes/SN moms I know. For their blogs, their courage to go and do and move and multiply! Nothing gets these mamas down. Well, I know it does, but they get back up so gracefully and what seems like quickly, we all would never know it. They make it look easy. I'm grateful for neighbors that bring my family food when we are at the hospital, and that drive up to visit us and put a smile on our face in Paxton's room. There is so much MORE to be grateful for! It far outweighs the hard. Plus, I know we all have our own hards, this is just ours. Yours may be private, big or small right now, but they are there, and will be there.

I was grateful to hear these words yesterday from Elder Neil L. Anderson's most recent general Conference talk:

By definition, trials will be trying. There may be anguish, confusion, sleepless nights, and pillows wet with tears. But our trials need not be spiritually fatal. They need not take us from our covenants or from the household of God.

“Remember, … it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.”²⁴

Like the intense fire that transforms iron into steel, as we remain faithful during the fiery trial of our faith, we are spiritually refined and strengthened.

President Ezra Taft Benson said, “Every [person] eventually is backed up to the wall of faith, and there … must make his stand.”²³ Don’t be surprised when it happens to you!

Sending my love to all of you, fighting your own battles, standing up in your own trials. Thank you for inspiring me to keep on doing the same. Hopefully we can all be stilled as we count our own blessings amongst the hards. Loves.

I cannot believe my Angel Boy is 2!

Happy Birthday our Dear Sweet Paxton.

How many ways you have enriched our lives.

You have taught us about Love. Hope. Perspective. Faith. Service. Diligence. Stillness. Activity. Blessings. Happiness. Closeness. What Matters Most. Family. Dreams. Little Victories. Medicine. Knowledge. Skills. Sacrifice. Being Brave. Doing Our Best. In all things giving Thanks to God. Prayer. Priesthood Power. Fasting. Desires. Learning learning learning. 

I feel like everyday we are learning something new. Or learning the same thing, again, whether I want to or not. You have helped me to learn oh so much about myself. About priorities. About choosing. About submitting. About seeking. 

We have a bond that is deep and true, intrinsically knowing each other and how to communicate one with another, without spoken words. I love every part of your body and soul. You are a miracle in every fashion and form. A gift from God to teach us more what He is like, about His Love. A gift to help us focus and become what we can become. How our life has changed with you in it. The struggles have been great. But the blessings are greater. I am grateful for this gift. For the gift you are and all of the joy, learning, people, and growth you have brought into our lives. You have made me aware of things that I knew nothing about. That I did not know were so important, or difficult, for others. You have stretched our capacities and our compassion. You have exhibited more faith and strength than any of us could muster at any age. You are a saint for being here and submitting to an imperfect body, all to have the experience of mortal life, and I know, to bless us with all that you have to teach us. We are so grateful for your time here, everyday. Even with the sacrifices, and the "hards", you know we wouldn't have it any other way. With your perfect innocence you are molding us to be better people. Inspiring us. Reminding us. Lifting us. Loving us! Oh, how we love you!!! Thank you for your example of faith, mildness, simplicity, joy, and endurance. You are teaching us more than we could ever teach you.

I love to see you tilt your head back with laughter and glee when you are so happy. Usually from an interaction with us, seeing a toy you think is being silly or you are excited to play with, when we gobble your tummy and thighs and you go crazy. :) Even when you see us getting a diaper to change you, back goes the head and up goes the smile, happy as can be. You know what you like, and you know what you don't like. You kick things away when you are done with them. You will guard your face or trach if you don't want to be bothered or suctioned. You will allow it if you know it will help. 

You still smile at the angels. I have noticed now they are most with you when you are alone. I will see you laughing and smiling at the ceiling, like they are making you laugh. Who is playing peekaboo with you?! Is someone dancing in their angel whites, swishing their soft fabric over your face? You light up when they are around, and we both smile knowing that you are not alone. Mommy is grateful in those moments that I watch you from the monitor, usually when I need to finish getting something important done, and I know it is a tender grace of God that He has not left you alone. Or me either. We have been so richly blessed. You have given us strength and confidence in ourselves. To do things we never dreamed we could do. 

I'm amazed at all you have conquered, overcome. Your life is not easy but you don't know any different and you are happy most of the time. Unless you are hurting.  You are a true champion, Paxton, and always will be, no matter what. Come what may, you are our Hero. Our Angel. Our Miracle. Our Champ. We love you, Pacman. Happy Second Birthday! ...and many more...

Longing

Ah, that is more about me than it is about Paxton. I have had such the urge to WRITE for so long. It is just so hard to do it. How do you other SNM (Special Needs Mommies) do it? For-reals?! I think about things all day, even record memos on my phone, jot things down on paper, but it is just so hard to even make my way in to this nice little seat I have here in front of my computer to get to share anything.  I have a lot of high hopes of sharing my thoughts, so many more experiences and updates about Paxton, improvements and successes for our whole family (little victories), writing about some of our big days, all the things I'm learning, blah blah blah!

I have had so many wonderful experiences lately. I feel like so many doors keep opening. It has literally been one thing after the next lately. If you have posted on my blog or reached out to me on FB or even sent me an email, please know that I am just (I don't like to use this phrase...what is a synonym for 'dying') to write you back! Seriously, I am so grateful and appreciate people reaching out so much. I am loving meeting new people who share similar experiences and stories and emotions. It is a great blessing to make those connections and strengthen each other. I just never get time on my computer! And if I sneak a read on my phone here or there, it's still too difficult to write back.  So seriously, when are you mommies searching blogs and writing your own? Don't you people sleep? :) I joke but that is the only time I can get blogging done, if I sacrifice my sleep. And, usually my body wins over my brain at this hour. But I couldn't wait any longer! I need to blog. Like I said, one big thing after the next. I have a big 'thing' tomorrow morning, which I should really go get sleep for, then I hope to start making more of an effort to be on here.  I don't assume it is for any of you. I know it is for me. But I do love to share the lessons I have learned and the solutions even physically we have come up with to help make life a little easier everyday with Paxton. So slowly but surely, simply and small, these posts will come!

Tonight I am so thankful for a couple wonderful weeks that we have had. The weather does so much for all of us. I look back at where we were a year ago and I just COUNT MY BLESSINGS, one by one.

Really...I literally used to take the video monitor with me to the bathroom!

Paxton could not tolerate the 'nose' (HME) well, so we were literally stuck in his bedroom all day.

I remember telling myself all winter that we just had to get through RSV season at home, just keep Paxton well enough to make it through the winter, then we could start to go outside again and feel the sunshine and some sanity. Well, his "triple crown" surgery on May 2, the very beginning of Summer!, knocked him out for what became a continual roller coaster of fevers and pneumonias until this February!!! That was HARD. Almost harder than last winter...waiting for summer to come, seeing people outside, and me still being stuck up there in that hot room doing the same things over and over again. :) Don't get me wrong, I love caring for and being with Paxton. I wouldn't trade any of what we have been through and I have learned for anything. That was not the issue...but anyone goes crazy staying in one room all day! Even the little man!

I used to have to schedule someone to be with my kids when I would take Paxton to the doctor, and yet another person with me to drive my car so I could sit in the back with Paxton, suctioning him and trying to calm him down (bc he hated the car seat).

Wow, we have come a long way.

Paxton not only tolerates the nose all day, whenever, wherever now, but he is even doing so well on his speaking valve (passy-muir valve). Thank heavens for this! He does not mind the car seat now and since last Fall I have not needed another adult in the car, we can go just fine on our own. I hardly have to pull over to suction him.

I don't have people in and out of my house all the time helping me with one thing or another. No, I actually have some privacy and independence. A lot of times now if there is more people here it is other kids playing with my boys, as it should be!

Pax has been so much healthier since he had his Nissen surgery in January. Yes, it was an awful route to get there, but it has certainly paid off. With him being so much more healthy and at home, he has been able to grow and progress much more. I am getting so used to packing everything up and going, whether it's downstairs, to a doctor, on a walk, etc. How nice that we are not only NOT bound to that room anymore, but also not bound to even just the house. We are venturing out more and more as Paxton is able. I have just come to accept that there is no EASY way to go about taking Paxton with us, even into my room while I shower, but it's worth it. Worth it to get him out of that room and for us all to feel a little bit more normal. It just takes time. Time to unplug and pack everything up, something I might have to do several times a day as he may go back up for a nap, then out again later.

We are still working on his sensitivity to the light (hurts his eyes because of the pressure from glaucoma); being outside is super hard on him in the daytime, but I do feel like it is better than last year as well. We have lots of baby sunglasses, hats, and even cushy goggles that we try to soften the burn for him! Some days are better than others, but I know he will get there eventually.

We love going on our family walks/bike rides in the evening now that the weather is nice. Oh it makes me so happy and feel so normal. It's amazing how feeling more and more normal, that one little word, makes you really feel so much better. We are not normal. But that's okay. We are adjusting and we are happy! Good things are happening. It is crazy, but I do truly feel like since Conference Paxton has been doing so well!! There must be many more strangers praying for him everywhere, a lucky and happy consequence/blessing for us. I am so happy for him and of course it makes myself happy as well! So thank you for your prayers. They are always helping. My 'prayer list' has grown quite a bit as well as I have learned and gained a testimony of how important it is, how much it truly does work and help when we pray for each other. I want to help anyone I know that is struggling or needs the extra prayer in anyway. I hope it does help!

So see, I'll end tonight where I started... How in the world do YOU busy mommies blog and is it really replacing your sleep? :) Loves and night to you all!

LDS General Conference

Wow. What a day. So much to share. Big post to come quickly.

 Not a bad way to start out your day... a hug from Elder Holland, him asking us how Paxton is doing, and saying, "Well let's go hear more about him!" So cute. He is always so kind to us.

Today demonstrates yet another layer of Paxton's mission being here. That he could come to a family who had a link to someone who could learn and express these thoughts with many people all over the world in similar situations as us. I feel so grateful. He teaches us all so much. My mom joked after the session, "We need to make him a little missionary nametag of his own!" So true! We were grateful to have some of Paxton's caregivers there with us who I hope felt the Spirit of the whole conference. How could anyone not? The leader's of God's church are amazing. I am so inspired and happy, motivated and content. I can't wait to study all of these talks further.

And even I will watch my dad's talk over and over as something different stands out each time!

Thanks to you all for the well wishes and fun comments today. It feels so good to share your story. What is yours???

Church News Summary

YouTube

Happy Fall (Nov. 13 post)

I know, I know. I am the worst at getting on here. I guess I'm going for the quarterly catch-ups now. :)

Pax is doing great. We are STILL battling all the concurrent fevers and infections, literally one right after another since May 17. BUT, we are also still seeing progression and development, which is great. I have had such joy the last few weeks in seeing Paxton really respond to certain therapies that we have worked on since coming home. It's great to see him coming along, even if it is delayed (but we expected that). About two weeks ago Paxton finally figured out how to roll all the way over, to both sides, and back. He has been rolling forever, but now, for the most part, he can get that last arm up and out from under his belly. Yippee! He is getting super strong at tummy time, and can balance himself so much better sitting up in my arms. It's delightful.  He also is still doing fabulous on the HME/nose, meaning we can bring him downstairs on his portable equipment any time we want, and he doesn't struggle as much in the car anymore. It's liberating to be able to take him to dr's apppointments on my own (although I enjoyed the visits with Grami and neighbors who would help us in the past). I may have to pull over once or twice to suction but usually that's about it. Yay!

I feel like we are much more really into a rythmn now and I can see all of us doing better. That first year really is survival, and I would never wish to go back to any moment of it! Pax, although still immuno-compromised with so many dr visits, surgeries on the horizon, etc. etc, is so much more stable. I am getting to the point where I can leave him, even rolling around on the floor for a minute while I run to grab his milk or throw some laundry in. And, I don't always feel like I have to be staring at the monitor every second. I can handle evenings on my own now with the three boys, even when Dave is out of town and I am trying to juggle them at dinner and bedtime. I'm not saying it's easy, but it feels good to be capable and to have our home to ourselves again, even if it is stressful and not as picture-perfect as I would like it to be.  So much of it is attributed to what a sweetheart little Paxton is. Unless he is really hurting or needing something, he is an angel and will be content playing on the floor or in a swing while I help the other boys or get them to bed. He also - finally! - at 16 months, is starting to get into a wee bit of a schedule. I can usually rely on noon as naptime now, with a small one around dinner-time. This helps me a lot in scheduling therapies, knowing when I can count on a shower, etc. Obviously every day is not the same, but it's definitely more regular for sure.

The contented feeling has remained. I feel such a joy in caring for my little Pacman and the rest of our clan here at home. And while sometimes I do feel the world outside may be going on without me, I am also feeling that this is my world. These boys are the cutest things to me and growing up all too fast. I'm getting to the ages with Camden and Mackay that I can really feel that some of what we are doing is okay! That we are teaching them, and despite their best efforts to make us think otherwise, they are listening! And getting it! They are gems to their brother Pax, and continue to learn how to help him with more and more things, especially how to play with and hold him. Paxton lights up when they are around and they always seem to know just what he needs. One day Pax's O2 tank was nearing empty and Camden came running to me saying, "Mom, Paxton's tank is on red and that reads BAD!" So cute for a little boy who is learning to read and while there were no words to read, he certainly was right that that meant bad! 'KK' loves to help push every syringe for Paxton, carry his chords when we go from one place to another, and they both love to make him laugh.

Excitedly, I heard Paxton vocalize for the first time about 2 days ago. Although he used to do great on the speaking valve, like on for 30 min at a time when he first started out, interestingly enough, now he is having a more difficult time with it. :( (coughing a lot!!!) But finally, I heard these cute little high-pitched sounds for the first time and loved it! He heard them too and now is trying to make those sounds even when he is on the nose. So fun!

I had a super uber proud mommy moment. The leaves were going. I knew it. I kept wanting to get my traditional annual Fall pictures of the boys but it seemed Davey Dew was always gone! Well finally, on a day that wasn't even particularly good, I packed everything up, got all three boys ready, hauled out the bumbo and my photo chair, my camera bag, and lastly the boys and Pax's equipment all loaded up in the double stroller, and headed to...the back yard! :) We got some really fun pictures that day and their interactions were so cute and genuine with each other. All that and it was all on my own! (Never on my own...God is always helping me.) Physically alone though. Phew! What an effort it was but I felt like it paid off and I got enough to satisfy my urge before the last of the leaves fell. I didn't quite get the smiles I wanted from Pax, but once he was just lying down in the grass and looking up at the leaves, well, then he was quite happy!

So Happy Fall to you all... that "Most special time of the year" is just around the bend!

It was a good day. Yay for updating the photo frames. Happy Mommy. :)

Time Flies

Oh my word. It's been a year! Our angel has turned ONE!!!

What an incredible living miracle Paxton is. It's amazing to see how his life began and how much he has improved and surprised us to this day. The Pacman has had 7 major surgeries, and numerous other visits to the OR for procedures and tests. On average, he visits 1 out of 13 specialists about 4x times a month. He is the utmost example of faith, endurance, submission, tolerance, and love, and is constantly teaching US about compassion, perspective, sacrifice, and joy. Seeing him smile is the biggest reward we could ask for and at the rate he shares his smiles, we are all feeling pretty satisfied.

To celebrate his big day, we had quite the 'open house' for Paxton, 'The Champ'. We were overwhelmed at everyone who came to show their love and support, some to meet Paxton for the first time. So many have prayed for Paxton and served our family in our time of difficulty, and we felt it was important to share that day with many of those very special people. Paxton sure came to a good support group, that's for sure. From family to friends and neighbors, he has a pretty greatly stacked house.

Pax was a trooper for his little get together. Since my last post, Paxton has continued to have fever after fever, infection after infection. Mostly pnuemonias. Well, he had gotten another one the day after his birthday, two days before his party. We decided to have it anyway and Pax was just a calm little bug. He didn't show any of his great smiles for the party, so I think he did sense the crowd, which is something he is definitely not used to. But of course, he was smiling again when our house turned back into the little place he is so accustomed to. I'm so grateful to my mom, my cousin, and several special freinds who made the party look so fabulous and helped restock the food, take pictures, and basically keep things going. Jen, Emily, Misty, Heather, Laura, Terra, Jane, and Jeanette...You Rock!

(You can catch a glimpse of the day by watching this.)

In the last two weeks, our family has had quite the major milestones. Thanks to some paid nursing hours, mom and dad were able to go to Hawaii for a week!

Yep! Wow! What a rejuvenation. I STILL feel restored! Yes, there were times that were very hard to relax, and we had a tough time feeling like we should really be there anyway, but all in all we enjoyed each other's company, great food, the sun and sand and waves and amazing turtles and views, snow cones, pina coladas, sunsets, taking pictures, adventures such as zip lines, kayaking and hiking barefoot through a jungle-ish canyon to swim in hidden waterfalls, jumping off waterfalls and rope swings, body surfing, surfing, long boarding, etc. Like I said, Wow.

That was a mighty thanks to this hot couple, Grami and Pa, who provided an incredible vacation to celebrate Pa's birthday. I know, we are pretty spoiled to be such lucky beneficiaries, children! 

In truth, what a blessing. Dave and I came home very restored and ready to welcome back our life again. In fact, I was excited to come home to it. And not in a naive, grass-is-always-greener kind of way. Being away helped me to realize even more what a blessing I have of caring for my sweet family. It is really an honor to have Paxton, and Camden and Mackay, in our lives, in our family, and I just wanted to come home and be the best mom to them. Even neater is that I feel like I have done a pretty good job since then! Yeah. For being pretty hard on myself, that feels SOOO good. ...

It's amazing how sometimes you can pray and pray for things and they won't come to pass because obviously the Lord knows what's best and it's not His will at that time. But throughout this last year I have also experienced several very distinct instances where it hasn't taken all the many prayers to help something come to pass, but rather, it's been the one, truly-fervent-deep and sincere-desire prayers that have made all the difference. 

I hope it is okay that I share this, and I do so because I think it's such a good reminder to us all that our Father in Heaven is there and ready to grant us blessings to sincere and earnest desires that are good and 'expedient' to us. Upon arriving home from our trip, and after months of feeling sad and tired of still needing so many people's help and looking for a paid 'helper', I plead to the Lord with newfound resolve to "Please, Magnify Me." I can honestly say that I have wanted to do so much more on my own for months and months. It is not an easy thing or a fun position to be in to be constantly needing and asking people for help. There have been many days that I have tried to 'do things on my own', but at some point, I am maxed out, have lost my patience with boys who are bored and need attention to their young minds and bodies (as well as Pax) and don't understand why they need to wait another minute. Those days were always just so hard and although I always wanted to be all of their full-time mom, I just felt I couldn't do it well enough to save all of our sanity. Well, I really really really wanted to be done with that. They are my kids. I want to be with them 100% of the time. Getting home I was determined to not rely on others. I was determined to either find a way to make it doable and healthy for all of us, or pay someone to help me. No more favors everywhere. The good news? My heartfelt prayer was heard!! I have been amazed and so happy at all that we have done on our own the last couple of weeks. There are moments, yes, but I am still so happy to be the one and only at home with my boys, disciplining and loving them, etc. Just feeling capable to run my home and family again the way I have wanted to and not felt able to for the last year. It has almost been so good the last few weeks that I wonder why it was so hard before, and have we really reached our "new normal"? Could we be exiting the "survival stage" of the first year that everyone talks about?

I know it is better for many reasons. For one, I can literally FEEL the Lord magnifying me and helping me to do what I want to do and what I need to do but cannot do alone. He has made my burdens lighter, manageable, made me calmer and more patient, more grateful and more content. It has been wonderful! Paxton has also been in such a better place. I used to not be able to bring him downstairs without him huffing and puffing and crying. Same with the car seat. Lately (after Paxton was on the vent for 6.5 weeks for 24 hours a day to help him recover from pnuemonias and collapsed lungs) he has been transitioning to the "nose" amazingly well! We used to always have him on the trach mask, confining us to his room, and being on the vent was even worse. We were confined for 2 months to that CORNER of the room. Insanity! But we have climbed to the top of that mountain and are finally enjoying a beautiful view! Right now, after Paxton has his morning cares and things, I basically put him on the nose and head downstairs for the day with the boys. I'm also getting so used to unplugging and replugging everything several times a day, carrying his stuff downstairs to play or back upstairs for a nap, back and forth. It's just becoming so much more second nature. This has been a goal of mine for months and I am so happy we are here (more portable), at least for now. I know Paxton is likely to have setbacks again, but also he is older and stronger and able to tolerate more things. He still can't really go outside during the day. We try but it's just too bright for him. Dusk is perfect though and we try to enjoy our backyard or even a walk around the block before sunset. I can't believe I'm even saying that. Just in June I tried taking Paxton on a walk around the block and we did not make it a blip. I feel so much freedom all of a sudden!

So, we have moved mountains and milestones and are all enjoying this bit more normal life. We have also ventured out with Paxton on several quick outtings in just the last month. Paxton has loved all of them with the exception of one - a boat - for a quick ten minute test drive so we thought it would be a good trial. I really think the biggest problem was it was still too bright in the evening. But I'm not in a hurry to try that again! However, Paxton has LOVED these little trips:

to a nearby lake to see and feed the ducks...

a walk up the canyon...

his first day at church (the lovely nakedness due to an awesome blowout!)...

the boat he didn't quite like (but brothers did)...

celebrating Mackay's birthday...(who got staples in the back of his head the day before, was Captain America on his birthday, and had surgery on his teeth 3 days later! Poor KK! He was a trooper!)

the Owlz Game sponsored by Kids on the Move...

No longer does he cry when he gets in the car, and almost always as soon as we put him in his stroller and begin to walk in some beautiful outdoor place Paxton just laughs and grins from ear to ear. Yeah for ALL OF US! But especially "Yeah Paxton, Go Paxton, Everybody say Yahoo for Paxton, Yahoo for Paxton!!!"

Today, the third of our first few drives on our own, with all THREE of my chillers in the car and no other adult, I felt SO NORMAL (!!!) driving home from the doctor's office to get McDonald's ice cream cones. Who knew I could ever be so happy about driving through McDonald's with my boys!! You can only understand this if you knew how limited we have been!

So we are in a good place. Clinging to the summer evening weather and welcoming back early bedtimes, much like you all I'm sure. But for today I am completely relishing the progress and happiness of huge steps forward, especially after 3 months of steps back. Always grateful for "better days ahead."

Happy 1st Birthday to our Angel, Champ, Paxton!
"And many more..."