Fly high sweet baby boy! Your job here is done, and we are all so proud of you.
I'm glad I came up to meet you, if only for a few moments!
Prayers to the family as they struggle to go on without their Carter Jay.
Happy Memorial day!
Prayers to the family as they struggle to go on without their Carter Jay.
Happy Memorial day!
I also got this email from a friend two days ago. Again, its timing eerily clear. You may have heard it. I had not, but its beautiful...
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
I teared up because I could totally picture my Jaxson up in heaven, saying that he wanted to come down to earth, to suffer, so that it would make the world a better place. Indeed he has done his job. I wouldn't have met the people I've met without Jax. I wouldn't know sweet Carter and his momma if I never had Jax.
So we wear our Team Carter bracelets, and pray tomorrow that everything goes according to Gods plan. We will miss sweet Carter, but he will be whole, and tube free, and able to run and play with his angel friends!
Also when I came home and got on the computer to write this post. I see that sweet Ben has also earned his wings today. Ben was one of the first kids to get a blankie. And the first kid I got to hand deliver a blankie to. He was stuck in our PICU, accross the country from home. His mom is so sweet, and not to long ago she was here again and we got to have breakfast together. We love you Ben and your sweet mom Becky!This picture is his old and new customs. You can see the one on the right is a tad bigger around. Our hope is it will push the airway open and help the coughing fits. We'll see! But look how tiny the holes are compared to my fingers. How in the world to you breathe through that tiny hole?!
Echo tomorrow. Send good heart vibes and good pulmonary pressure vibes please!!As you can see from the picture above, that was taken this morning, its been a very cold, dreary spring! Yesterday was chilly, but we decided that would be a good day to go to the zoo. The animals tend to be more active when its not super hot.
This is what Jax did most of the time at the zoo. which is a good thing, because when he's awake, he needs constant suctioning. It makes it not so fun to take him places anymore. Which negates my whole feeling of including him in everything! But look closely at this picture, do you see anything unusual?
Yeah that's a nice, big bee on my son's chest! I had no idea it was in this picture. Gives me the willies just looking at it! This kid is a bee magnet. When he was barely out of the hospital from his 4 month stay, our first outing with him, he had a hornet on his chest. I didn't see it and I put him over my shoulder. He started fussing and when I brought him down I saw it. I totally freaked out because I'm terrified of bees. It had stung him like 3 times. I was scared to death he was going to have some weird reaction, after all, he had just spent the last 4 months fighting for his life. We were still extremely nervous about his health.My little sleeping stud muffin in another new pair of shoes. I just can't help myself. I have a shoe fetish, a baby shoe fetish!!
Today we finally had our pulmonology appointment. The good things are, she said he sounded pretty good, she gave me a perscription for the robinol, and Tobi is our new best friend every other month! The bad things are, she has no idea why he's so junky, she thinks it may be his heart, YIKES! She got our echo moved up to next week, So thats great. My ped had been saying she wanted to try and get it moved up because she thinks his already loud murmer has gotten louder. You should hear it, its impressive! Pulmo said the same thing and she's wondering if something heart related is going on. We are in big trouble if its heart, because cardiology here is famously aloof! They don't have to be nudged to get things done, they have to be punched to get things done. So we'll see what the echo shows, and hope it gets accurate pressures, because they could still be high too. We are just wondering why his saturations are still low, when his lungs sound ok and the x-ray is not any different than normal. Who knows, Jax makes up his own rules!
I'm still trying to get a hold of people, and get addresses so I can get the auction items sent out. So if your still waiting you can email me personally at laceyrugg@hotmail.com. The auction seems like a simple fundraiser, but it is indeed a lot of work on my end, so bear with me! Also, since the bows were so popular, we have decided to sell those continously on Makayla's blog as an ongoing fundraiser. So if you didn't win them and want some, you can still buy them. I just need to figure out a good way to post them on there. If you know how to link a post so you can click on it in the sidebar please let me know how to do it! I hope to have them up in the next day or so!
I remember him being all boy when he was little. He loved to play baseball, until he was hit with a pitch when he was 6. That was the end of baseball for him. But the last 4 years, he has been an emotional roller coaster. We joke that he's our girl because he has more drama and hurt feelings than any girl I know!
He is Jax special buddy, and lover of all things special needs!
He played soccer a few years ago, but never really got into it. When Carter started baseball a couple of years ago, and became a 6 year old superstar, Mondo decided he wanted to play baseball again. Last year he told us he wanted to play after sign-ups, and there was no more room. So this year we asked him early. We warned him that if he played, he was going to be playing with kids that have played for years! And that they would probably be a lot better players than him. I didn't want him to be disappointed.
I'll admit, I was really worried about him playing, especially after I found out the team he was on consisted of players that played in a super league too. But we lucked out big time. The coach is incredible, and the players humble. They included him immediately, and never got upset when he struck out or missed a ball. Mondo has yet to hit a ball in a game. It is frustrating to me because I know he can do. Sunday we took the boys to the park and he was hitting them like crazy. He gets out on that field and freezes.
My shy, sensitive boy!
Last nights game was a nail biter. The two top teams were playing each other. It was a very close game, and unfortunately we had a horrible umpire. He botched calls left and right, for both teams.
We lost by one point.
Mondo was extremely upset. Not really because they lost, but because he didn't hit the ball. After hitting all those balls on Sunday, he was ready for the game. The umpire did call some bad balls on him, and I know that didn't help, but his self esteem is shot! He literally sobbed after the game. He also has CRT testing in school this week, and tons of make up baseball games. We will be at the park every night this week. Last night I gave him one of Jax trazadones to try and help him sleep all night. He's like me, he will lay in bed all night, unable to shut his brain off. He woke up pretty happy this morning, but I hate that his self esteem is so low. I want my boys to experience everything. Everything except heartache. And I know that heartache is a part of life, but I also think what they've been through with Jax is enough for a lifetime. What do we do when we don't have that plastic bubble to wrap around our kids? I want him to hit the ball so bad, and I know he can do it.
Its also so hard with Carter. He is probably going to be playing in the super league next year with a couple of his team mates. He is just to good for this league. His team is undefeated right now. That doesn't help Mondo's self esteem at all either!
Sigh....
What do I do for him?
Being a mother is definitely harder than any job I know!
The top is the beginning of May and the bottom is the end of May.
Four years, wow, that means my baby is going to be 5 this year! Wow how times flies, and yet seems to stand still at the same time. Its amazing to both see how far Jax has come, and how stunted some things still seem to be.
Like I never thought four years later we'd still have so many tubes climbing into his crib, or that he would even still be in a crib!
The boys wanted to bring me breakfast in bed, which was really difficult. I stayed in bed as long as I could but it ended up being breakfast in Jax room after his morning suctioning!
Whatever, the boys had a great time doing it, and thats all that matters.
I love being a mommy more than anything in the world. I can't believe that next Mothers day I will have Makayla here with us!