Wednesday, July 30, 2008
Little Hiatus
Friday, July 25, 2008
Miracles.....
"I have to tell you.... today.... we are ecstatic and tossing aside the "honeymoon" theory. We are so completely thrilled with his progress. Amazed and SO proud of him. We will take tomorrow as it comes with no expectations but TODAY?? Just thrilled. Our doctor who usually paints the most "realistic" picture came in tonight and said "Well... Angel is writing his own textbook on this. He is basically the poster child for liver and bowel transplant." He went on to say that he has never SEEN nor even HEARD of a patient doing as well as Angel has with no complications to speak of at this point. He should not even be extubated at this point and he has been extubated for 2 days. Usually after extubation they are on oxygen for at least 24 hours... he was off in 2 hours. He is only getting pain medication TWICE every shift - which is 12 hours. His tolerance of pain is nothing short of astounding. When I look at that gaping wound with 8 inch wide and tall exposed, CUT OPEN flesh, I cannot imagine that a person could be ALIVE with that sort of wound open... much less laughing, playing, feisty, and even sometimes rolling himself over for the nurses or trying to scoot himself up in bed. I just stare at him and marvel. "
Praise God!!!!
Thursday, July 24, 2008
First Movie
The boys LOVED it!!! Both were delightfully well behaved, and just sat so still, one next to the other as the movie began. They nibbled on popcorn and M&M's as they giggled at different parts, and Hudson would lean over occasionally to whisper "hey.....watch 'dis....watch....he's gonna......" and then he would 'prepare' us for what was coming next. It was super cute! They both took turns crawling up into my lap to snuggle, which I, of-course soaked up! At one point, while Luke was on my lap, Hudson even reached across the seat to hold my hand. :) Awwww.....such sweet boys they are!!!!
About 45 minutes into the show, both boys began to get a little squirmy in their seats and I quietly wondered if we might have to leave before it was over. But their attention remained on the movie for the most part and they made it through to the end! I was so proud of them and so happy that they did so well! We made a pit stop before leaving and ended up playing in the little arcade for a spell, and both boys were not very happy with me when it came time to leave!
:( They would have played there together all day if I had let them! All in all, it was a great movie experience, and I relished not only some one on one time with Luke, but also some moments with Hudson as well! He seems to be doing very well with all that is going on. He spoke a little bit about Angel as we drove...he told me about how he got to see him the other day in the 'hopstl' and how he (Angel) was sleeping. He enthusiastically told me about his tube in his mouth (ventilator) being taken out too and how he couldn't wait to see him again! Sweet, precious boy!
I wanted to let each of you know that Sarah has a new website up to provide updates and such. You can now check in on your own for information on Angel and how to help! It is http://angelswings708.blogspot.com/.
I am off for now to prepare for the weekend. We get to have a fun weekend away at Lake Havasu with Krystal, Will and the kids! Luke is SOOOO looking forward to riding in a boat...another new experience for him! And Ty and I are desperate for some time to relax. It should be fun!
Wednesday, July 23, 2008
I AM...the Bright and Morning Star
I AM...the Breath of all Creation
Who always was ,And is to come
I AM...the One who walked on water
I AM...the One who calmed the seas
I AM...the Miracles and Wonders
So come and see
And follow Me
You will know
(chorus)
I AM...the Fount of Living Water
The Risen Son of Man
The Healer of the Broken
And when you cry
I AM...your Savior and Redeemer
Who bore the sin of man
The Author and Perfecter
Beginning and the End
Yes...I AM
I AM...the Spirit deep inside you
I AM..the Word upon your heart
I AM...the One who even knew you
Before your birth
Before you were
(chorus)
I AM...the Fount of Living Water
The Risen Son of Man
The Healer of the Broken
And when you cry
I AM...your Savior and Redeemer
Who bore the sin of man
The Author and Perfecter
Beginning and the End
I AM
Yes I AM
Throughout the Earth...I AM
The Universe...I AM
In every heart...I AM
Oh, where you are...I AM
The Lord of Lords
The King of Kings
The Holy Lamb
Above all things
Yes, I AM Almighty God your Father
The Risen Son of Man
The Healer of the Broken
And when you cry
I AM your Savior and Redeemer
Who bore the sin of man
The Author and Perfecter
Beginning and the End -
Yes I AM!
Who I AM!
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I heard this song by Mark Schultz yesterday morning as I drove home from spending some time with Laura and Maddie. Every word...every line of this song spoke deeply into my heart, whispering comfort and peace. I cried. You know...those tears that come out of the blue? The ones that spill over as if a fountain had just been turned on? The ones that you were trying so hard to hold in and thought you were doing a pretty good job concealing? Yes.....those.
Yesterday, my heart was anxious. It pounded deep in my chest for a good part of the day and I just felt on edge. Yesterday, my reaction to all that is going on around me was physical (there are other things too, with other friends, that I am not a liberty to speak of...horrible things). While I cannot put precise words to the deep feelings of empathy and pain I carry for my friends who are going through such treacherous times, I do know that I love them all very much and their pain has a ripple effect into the lives of those around them that I feel. I cannot shake it. God has laid them on my heart and I do the only thing I can 'do', which is to pray. I think the anxiety yesterday arose out of the simple fact that I am a do-er. One who wants to be in the trenches, helping. But in all practicality, I cannot act in these situations....I have to relinquish myself to what Psalm 49 says..."Be still and know that I am God." I have to sit still and pray. That is hard for me. It goes against my grain....it seems unnatural. The sitting still part...not the praying part. So you can see how the anxiety began to rise in my heart.
But isn't God amazing? Through that song yesterday, He brought about peace. He affirmed that HE is God....the healer of the broken, the Redeemer. He is here....over it all....watching, orchestrating things for good, comforting. Hhmmmmmmmmm. How glorious!!!! I love how he always does something like that.....sending a song, or a word from a friend...a little message hidden somewhere in your day or a verse from the Bible that shoots like an arrow straight into your heart. He is so faithful!
I am learning. Learning to rest and put my cares on Him. To let go of the worry. You would have thought I would have learned this by now. LOL! And I have.....in bits and pieces. But there is ground yet to gain, and I have a sneaking suspicion that this will be a lifelong process for me. Like I said....its ingrained.
Now, switching to what you probably all came to read...an update. Angel is doing quite well. He was extubated yesterday (no more respirator) and has been awake at times, though Sarah says he quickly exhausts and sleeps. They have been working to manage his pain without compromising his ability to breathe, which has been very rough on Sarah because at times throughout the day, that meant he seemed to be in excruciating pain. :( All the doctors and nurses have told them that Angel is doing amazingly well for this stage of the game. They cannot believe how strong he is! That's Angel!! :) But Sarah also wrote last night that they kinda fore-warned them that this is the 'honeymoon' period...the first three days post-transplant. Apparently around days 3 to 5, infection and rejection begin to arise. She said that "about 80% of liver/bowel transplant kids have some form of rejection". The coming days will likely be harder all around. She was grateful for this knowledge...to be able to mentally gear up and prepare. I would be too.
Sarah met with the new OB yesterday as well and set her c-section date for Aug. 15th (the day before Ellie's 1st birthday!) She will deliver there at UCLA, on the same floor, in fact, as Angel, so Nick will not have to go far to be with either of his precious loved-ones. Another detail God so wonderfully orchestrated! They have yet to secure housing, but are prayerfully working on that as well. Once that detail in set, Laura and I have offered to help prepare for sweet Haven's arrival by gathering, packing and moving a mini nursery to their new location. Again, this is where that deep sense of empathy comes in. I just cannot imagine how disappointing it must feel to have prepared all these months for your precious babe's arrival...to have purchased just the right things and decorated just so, only to have to leave it all behind for a foreign (and teeny tiny) new place. :( It breaks my heart. So it is my prayer that Laura and I can help Sarah to create a cozy, homey little spot for Haven to come home to....a special place all her own to celebrate her. With so much going on around them and so much stress, I pray that Haven's birth will be a time of sweet rejoicing and celebration and not an added stress or burden. I know it will be.....a celebration that is!
Well, my friends...that is it for today. At-least at this point. Here is how you can pray today....
* still for them to secure housing that is both big enough and affordable
* for infection to be kept at bay and there to be the least amount or NO rejection (God could work a
miracle here, if He wants to!!!)
*for Hudson, who is with his grandmas.....that he is able to adjust to all these changes well
Thank you, friends!
Monday, July 21, 2008
A New Day....
Sarah and Nick were able to sleep some through the night, but she admits to feeling very numb and in shock that this is all truly happening. There is much trepidation and fear of what is to come.....of seeing Angel intubated; his body likely not 'closed' in the PICU when the surgery is completed....of the precarious hours that will follow as they try to stabilize him. Unfortunately, the coming hours and days will likely be the hardest, as exhaustion and reality set in. There is housing yet to find (that is insanely expensive... upwards of $3000 a month for a small furnished apartment!!!), details to work out as to where and how Haven will be born, and how/when Hudson (who it seems is now coming down with a sore throat) :( will be able to see his brother. So much for one family to face! Thankfully, there is an army of friends and family around them to offer support in all the ways that will be needed.
I slept fitfully through the night, waking from dreams of Angel and finding it difficult to return to sleep. I must've fallen asleep praying on several occasions. I must admit to you that yesterday was quite intense for me....a little more than maybe was necessary....but I just feel all of this so deeply, with so much compassion in my heart. It is very difficult to watch someone so close to you suffer so deeply and hurt so intensely! It seems wrong that my life can go on 'normally' when there is something so life altering happening to someone you care about! It just seems unfair. And not to mention your own personal fears and worries! I sat for a long time last night, talking to Ty and crying, and at his urging decided I needed to pray for a healthy perspective....that I might be able to be compassionate and empathetic (...and useful!) without being completely burdened and weighed down. It is in God's hands, after all. I have no control over this and I just keep hearing Him whisper for me to trust Him and to allow Him to move and work. Trust. Yes. My mind does. My mind believes every single letter of His word and knows that He is in control. But to submit my heart and my emotions to that trust is a far greater task for me. But really.....it is simple. Am I going to choose to completely trust Him, or am I going to falsely hold on to some small, illogical belief that by being so completely wrapped up in this emotionally, that I somehow have a smidge of control? I relinquish that God, and God alone has the control. And thank goodness for that! Psalm 46:10 will be my verse for today... "Be still and know that I am God."
Restoration. That word has been repeated in my mind since I awoke this morning. God will restore Angel's body, and though wounded now, he will be healed. I trust in this. And restoration is also at hand for me, as I learn to lean on our mighty God more and more ....that I might be a source of strength to Sarah and Nick if/when I am called upon.
---------------------------------
How you can pray today:
*for affordable housing to become available to Sarah and Nick and other finances as well
* for Angel to come through surgery well and begin the long process of recovery
*for Hudson to be healthy and able to come to the hospital soon
*for the details of Haven's arrival (a new OB in UCLA? C-section there as well?)
*rest and comfort for Sarah and Nick
THANK YOU......each of you....for committing to helping through prayer. God is faithful to do mighty things when we commit them to prayer!
Sunday, July 20, 2008
Perfect Match
(I was fortunate to be able to do some maternity portraits for Sarah, Nick, the boys, and sweet baby Haven this week. )
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I just read Sarah's latest update....the organs available are, in the doctor's words "a perfect match" so Angel will be going for his transplant in just a few hours....around 7pm. They have been preparing him all day (both physically and emotionally) and per Sarah, when the doctor came in to confirm that all systems were go, Angel became very quiet and heavily focused into his Nintendo DS. :( I have very few words to express the gravity of this day....only lots of tears, waiting and prayers. Sarah expressed in a previous update that while many families are excited/happy about transplant as it is a new lease on life, she and Nick are struggling to find peace about it all. In her words "...it is very, very hard to take your bouncing, sword fighting, energetic kid and hand him over to the doctors knowing that the next time you see him he will be intubated, wounded and very ill....". Of-course there is hope that he will make it through this better off, but they really are buying a whole new set of issues with this transplant. It just isn't cut and dry or a simple fix-it kind of thing.
Anyhow, I ask specifically now for prayer for a smooth, uneventful surgery (it will likely last between 8-12 hours) and for God's peace, grace, and comfort to be wrapped about Sarah and Nick tonight. Further still, Sarah is reeling from all this and is finding it difficult to image the moment of separation when she must watch her precious son wheeled down that hallway to to OR. Please, please pray for that moment and for her mommy heart to feel peaceful knowing that our Saviour has his arms wrapped around Angel through these dark hours. Lord....keep him safe.....
The journey has begun....
**UPDATE*** 8:45am
Just read another update from Sarah. They are at UCLA, waiting. They are in a room on the pediatric Hematology/Oncology floor, waiting for orders or what it to come next. They have done some preliminary tests this morning (EKG, xrays, etc) but that is all so far. The organs (liver, bowel and pancreas) are coming from a donor in New York.....and on that side of it means that someone there lost a loved one yesterday. :( Please pray for them as well. Sarah and Nick still do not yet know if the organs are going to be 'good' and if they ARE, when surgery will be, so at this moment, they must just wait.....and pray. We all will be doing the same from here.
Friday, July 18, 2008
Where do they go????
Friday, July 11, 2008
Night cap....
Anyway, for the first time in a long time, I'm so thankful that it is Friday and the week is over! It's been one of 'those' weeks for me. Interestingly enough, nothing negative really happened to make it a rough week. Just the day to day, normal things. But for one reason or another, I feel completely drained and in need of a break today. I teased tonight that sometimes I feel like I'm living in the movie Groundhogs Day...where each day is so very much like the last and things are so entirely predictable that you have to wonder if someone didn't just push the repeat button on life. Ever have days like that? When you can predict the precise moment your child will wake up or melt down or the words that will come from someones lips or exactly how your day will go...down to the minute? That was my week. Predictable almost to the point of irritation. Not that predictability is bad...in fact, a few of you readers out there would argue that some predictability in life right now would be a huge blessing. And I keep that in perspective as I write. But tonight, I just need a break from the monotony. I'm slightly underwhelmed at the moment.
Annnnyyyyyway.....my intentions tonight are not to bemoan my mediocrity right now. I actually wanted to tell you about something wonderful that happened this week. On Tuesday, I was fortunate to be able to spend a morning at the park with Sarah, Hudson and Angel. Angel's labs were looking a tad bit better this week (at-least his immunity was up) so Sarah was finally able to end their 2 month long seclusion and take the boys out a bit. Luke, Ellie and I were delighted to be their first little outing! :) We met at the park and played for some time in the early part of the morning before it got too blazing hot! The boys had a BLAST and I must say that it did my heart wonders to be able to spend some time with them! Especially after our 4th of July got jazzed up with the whole strep throat thing! With Angel's health so precarious right now, I just needed to see him...to spend some time playing with him and making a precious memory for myself. And in the same way, I needed to see Sarah too. Her recent weeks have been such a roller coaster and because she is my close friend, I feel like I have been riding those bumps and turns along with her. As I write those words, I have to snicker at myself for feeling 'underwhelmed' tonight. Seems like such a contradiction to the crazy feelings of just a week ago! Silly. How quickly feelings change, eh? Regardless of my fleeting emotions tonight, I was and am so grateful to have spent some time with them! Here are a few cute pics I took after all their running and playing.
Look at those rosey cheeks!!!
And I love these two.....look how grown up they look together!!!!
Can't you just see them in ten years time....teenagers and still friends? I can. Love that thought!
And by the looks of him, one wouldn't know how dangerously ill Angel has been! He has such a fighting, vibrant spirit! He was finally listed for organ transplant last week, with an urgent but not as emergent status as they originally thought. There are daily up's and downs, and the entire situation is still immesely precarious, but for now... for this week at-least, they were all able to live a little! Praises for that!
I am slowly but surely sliding into the abyss of sleep as I type, so it is time for me to go. Sorry for the somewhat disjointed, randomness of this post. Such a strange mood tonight. And it's not even a full moon! :) LOL! Night, friends!
Thursday, July 10, 2008
The little things.....
I'm learning that it is the little, seemingly insignificant things in my daily life that mean the most to me these days. The unexpected "I love you" from my son's lips, the sweet giggles of my children as they play together, the caress of Ellie's hand on my cheek as rock her, the hug of a friend. Those little moments, as fleeting as they are, are priceless to me. It is in these moments where God continually whispers His love into my heart. I am sustained by these moments. Especially when the hustle and bustle of busy days consume the quiet times. These moments are mini-vacations of the mind. Time stands still for the briefest of moments.
This morning, after an early walk, I was again out in the backyard inspecting the plants. It's serene out there this time of the morning. The cool, crisp morning air...the stillness. I love it! And as I went over to take in the delightful, sweet aroma of my blooming roses, Ellie's rose bush again took center stage. Remember how it was budding leaves a few weeks ago? Her first rose is now opening among the few tender leaves. This is still so crazy to me. And it may seem crazy to you that I make such a big deal over it, but is holds much significance for me---more in the lessons it is teaching me than anything else. It echoes God's desire to delight me. Its almost as if He put that rose there just for me. A little gift from him to show me he loves me. I don't know if you any of you have ever read Stasi Eldredge's book Captivating (she is the wife of John Eldredge who wrote Wild at Heart,). Its a fantastic book...highly recommended...and it speaks often of these things. The back of the book reads,
"Every woman was once a little girl. And every little girl
holds in her heart her most precious dreams. She longs to be swept up into a
romance, to play an irreplaceable role in a great adventure, to be the Beauty of
the story. Those desires are far more than child's play. They are the secret to
the feminine heart. The message of Captivating is this: Your heart matters more
than anything else in all creation. The desires you had as a little girl and the
longings you still feel as a woman--they are telling you of the life God has
created for you to live. He offers to come now as the Hero of your story, to
rescue your heart and release you to live as a fully alive and feminine woman. A
woman who is truly captivating."
In part of the story, the author talks about how, one day, her husband spent a morning on the beach talking to God and praying, and as he gazed out into the ocean, the huge form of a whale caught his eye. As he watched it, he was certain that God had sent that whale to him that morning, just for his sheer pleasure....just to delight his soul. Stasi, the author, then spoke about how she wanted such an experience with God. She wanted such a gift, and she prayed one day, that God would send her a whale. Literally. She went out to the beach, praying and talking with God and she asked him for a whale! :) But no whale came. She felt disappointed and wondered why God would not give her such gifts like he gave to her husband. Some time later that same morning I believe, as she walked along the shore, she happened upon a starfish in the sand. She thought it was beautiful and thanked God for the simply pleasure of seeing it. She knew it was not every day that one sees a starfish on the sand like that. But in her heart, it still was no whale! She wanted something grand....something amazing! (Oh, how we are all this way, aren't we? Wanting ever more than we have!) So....she continued on her walk down the beach and her conversation with the Lord. She related that as she rounded a bend a short time later, much to her surprise, a huge expanse of starfish laid out in front of her. Not just one measly starfish, but hundreds there on the sand before her!!!! God spoke to her in this moment that yes...he sent John (her husband) a whale because that was his gift for John. Just for him. But that He loves her just as much and wanted to give her something that would be meaningful to her! So he sent those incredible starfish. Something that would be hers and hers alone. Isn't God so that way! He longs to delight and love us in a way that is ours alone. Not in a cookie-cutter, one size fits all way. God loves each of us individually....uniquely. I love that! And this morning, through my simple, once-was-dead-and-now-it-lives rose bush, God delights me with a simple, lavendar rose. It may not be a hundred starfish or an enormous whale, but it is my gift from my heavenly Father!
So my question to you is, how is God delighting you today?
Wednesday, July 9, 2008
Good intentions.....
Friday, July 4, 2008
Happy Independence Day!
This was our first year going IN to the stadium with Luke (outside my belly!) and his first closeup experience with fireworks. He had SUCH a blast this year and did great with the fireworks, despite how loud they were! My parents were with us this year too....here is Luke modeling Grandma's sunglasses...
Ready for the fireworks to start...
Watching the sky divers....
2008
And now you're all caught up! :) We will undoubtedly have a much more mellow 4th this year. Hanging 'round home mostly. But, it's a day to celebrate nonetheless. We are so fortunate to be FREE! Happy Independence Day, my friends! May you count your blessings today!