Friday, February 6, 2009

matty matt- 3 and a half weeks

we took matty matt to the zoo today and really had a great time. me, my two kids, a friend and her twins AND newborn, and "r" with "e, j" and matt. it was mayhem, but super fun mayhem! everyone was well behaved, it was great. i will post more from the zoo later, but i wanted to post some of matt, because people, i am not kidding. this kid gets cuter every day. i think he really liked the zoo....







Thursday, February 5, 2009

rollercoaster

i wanted to thank you all for going on this roller coaster with us. nothing is for sure, or determined, or whatever medical term you'd like to insert. but things don't look good. matt is back home, i snugged him for a moment earlier (he's super snuggly). i personally don't understand anything but that God is sovereign. and He is sovereign over this. He even must be sovereign over the fact that someone mentioned hope and then it all seemed to fall apart. why would that happen? how could it happen that we are in a place of contentment, sad, but understanding that there is no hope for matt's little life to be extended, to jumping for joy that there is a CHANCE that he could be healed, and then back to square one. back the original diagnosis. hydroencephaly, life span, less than 12 months. and this is where God provides His peace, and He has. but i am not even his mommy and my emotions feel like conditioning week in high school sports. spent. all done. in pain. please keep praying for "r and s" and their emotions. their faith has not wavered in any of this, and it is such a testimony to me and all who know them. thank you to all of you who check in on him and pray for him. we will continue to do what we were doing, following his life, documenting and posting all the new experiences he has as he is loved endlessly.

Wednesday, February 4, 2009

LATEST UPDATE:

i just talkd to "r" and she is at the hospital about to take matt home.

the results from his cat scan were inconclusive.

so hard to hear. because we really wanted answers. but the doctors, for whom "r & s" are really thankful for, are still looking over the films and contacting some other experts to look as well for anything that they might have missed.

what the doctor's deem "possible" as a cortex on the film seems to have calcifications covering the area, which most likely is a result of an infection while in utero and what might have caused his condition, but would make it impossible to treat. this finding would put him back with his first diagnosis of having hydraencephaly (sp?) and no procedure could be done to reverse it. so it doesn't seem he is a candidate for the procedure any longer but they have been asked to wait again, while other doctors are called in for second opionions. so they wait.

so as matt's family waits with the words "inconclusive" lingering around until more doctors can look at his results, they are obviously disappointed and sad. but "r" reassured me that as as hard as this rollercoaster is and how grim the news is to take if this "miracle procedure" can't be used with matt, their faith does not waiver. they are finding good things in this day as they were overwhelmed at the physicians they were blessed with today and how each one kept them encouraged and informed all while being very compassionate and caring for matt and his best well-being. they felt covered in prayer all day and are very thankful for a body of believers who would go alongside them on this rollercoaster of a day...

they will take him home within the hour i think and the kids are excited to see him and missed him today. so "r" is just glad to be able to get him out of the hospital and have him home tonight. she is mentally going back to "normal", whatever that is, ha...and glad to be getting matt home where he can be loved on and be comfortable...

they will wait to hear more from doctors over the next day or so, but for now are praying and praying God's will..and loving on sweet matt.

"r" wants to thank EVERYONE for their prayers today..

update on matt's tests...

UPDATE******matt is done with his tests. he was alert and taking a full bottle and ready for a nap when i talked to "r"..they can take him home very soon..he is doing ok. just waiting now...lots of waiting.


the latest on matt is this...

matt will be sedated at 1pm today for a cat scan. the doctors won't know until tomorrow or the next day what the final decision will be. they are looking for a thin layer of cortex in his brain. if they cannot find this thin layer of cortex there, they will not be able to do the procedure.

please continue to be in prayer for matt, for comfort and ease of pain and for protection during the tests.

pray for "r" and "s" for peace of mind and comfort as they give matt over to the doctor's care and wisdom and for patience as they wait it out over the next few hours and days for the results...pray for a peace and calm that surpasses ALL and any understanding...

pray for the doctor's wisdom, discernment and care over matt. pray that if it's God's will for matt to be healed that the thin layer of cortex will be seen without a doubt...clearly shown to the doctor's eye so that a proper decision can be made for matt's without any hesitation.

will be updating with more news as we hear it!

bless you, sweet little matty matt! be a strong brave boy today. God's loving hands are on you, sweet boy! hundreds are praying for you and bathing you and your family in prayer and love....

Tuesday, February 3, 2009

PLEASE PRAY STAT!!!!

**UPDATE**
it's not much of one, but matt was admitted to the hospital this evening and will have a CT scan tomorrow afternoon sometime around 1pm. they will then decide where to go from there. please continue to pray for wisdom and thank you all so much for the comments. as a matter of fact, if you are reading and praying please leave a comment so "r" and "s" can see just how many people love them and their boy. they will cherish your words forever. also, i have to share... i was driving home tonight from the store, and just praying and begging God for a miracle for baby matt if it's His will. i was listening to klove at the time and the DJ came on and decided to share a story of a listener mom in oklahoma or somewhere who just gave birth to premature triplets and needed prayers for a miracle. the DJ wanted to share some of the many phone calls he had received about it. it was "i wasn't expected to live when i was born, and i'm 24 now", or "i had sextuplets and one was tiny and very sick but today she is healthy and 3 years old", etc. i thought it was so crazy that this came on right when i was praying the words "miracle baby"! i think it was God telling me that He can do ANYTHING. that doesn't necessarily mean that he will choose to heal matt and i know that, but wouldn't it be awesome.
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Eph. 3:20


(original post)
i fear that some of you will read this and think "no way, that's a lifetime movie" or something like that. but this could be a miracle. "r" got a call from matt's hospice neurologist today. he wants matt to be admitted immediately to the hospital for a procedure. this dr. thinks that there is a chance that matt has a normal brain, compressed by this fluid; if the fluid was drained from matt's brain, that his brain would "open up" and that he could lead a normal life. walk. talk. all of these things. it's almost too much to write, my fingers shake as i type this. as soon as the hospital calls and says there is an open bed, "r" will take matt down there. please pray for wisdom. please pray that they will know whether or not to do the procedure here or somewhere else. please pray for protection over matt during the procedure. please pray for "r" and "s" as it will be so hard to take matt and leave him at the hospital. please pray over ALL that God's will will be done in this and that we will all have peace about whatever it is. and that we will remember that God is sovereign over this. all of it. no. matter. what. happens. PLEASE PRAY WITH US. i will update soon. but it could be the middle of the night before they call back. thank you all so much. i know this sounds crazy, but God is bigger than this. and no matter what He does, we will praise Him. this was totally unexpected.

a thank you from "r" and "s"

Father God, Thank you for showing us your goodness through your body, the Church. You have provided for Matt in a cohesive, consistent manner that speaks of your omnipotence and sovereignty. You arranged transportation for Matt's mother to the hospital, a home for him to reside in, wisdom for the foolish, formula, medical care, medications, legal and professional services, baby clothes, a sling, swings, comfort, companionship, diapers, car seat, stroller, and burp cloths, and you did all of this without any effort on our part. All of this and much more you have done through the members of your body in multiplicity so that no one of us can take credit for your goodness. Thank you that you are God and there is none like you. You are the Restorer Redeemer who patiently seeks to transform darkness into light. Matt was born as the result of a tragic assault on a bright, sweet girl only 15 yrs. old, and he has a "lack of brain" condition, which is incompatible with life. Despite these evils, you have provided for this "unwanted" child with seamless compassion. You know that Matt's ailments are too much for us to carry alone, and as a result you have given us your body to act as your tangible hands and feet. Thank you for Matt, our "gift of the Lord." He is yours, and we thank you for this opportunity to know your love through the love of your people. “Now unto the King eternal, immortal, invisible, the only God, be honor and glory for ever and ever. Amen.” 1 Timothy 1:17

Jesus said, “By this all men will know that you are my disciples, if you love one another,” (John 13:35). Over the past two weeks, we have watched as the body of Christ united together to love Matt in a functional and practical manner consistent with 1 John 3:18, which encourages us to love “with actions and in truth.” God graciously utilized the “different gifts” present in His body to provide for all of Matt’s needs. We hope the following thank you notes will testify to God’s glory and His supernatural compassion on “the least of these” as we have seen his goodness worked out in accordance with Romans 12: 1-16 (some of the gifts given are italicized below, however, the list in Romans is not intended to be exclusive so there are not italics in every thank you note).

"unnamed sister" Thank you for serving as Christ's hands and feet in the "hour of need." When you found Matt's young birthmother, "t," wandering on the street, you brought her into the hospital just in time for her to deliver Matt. Thank you for staying with "t" through the birth process and for showing yourself to be a kind neighbor, such that she was willing to share with you the secret she had kept from the rest of the world for the previous 9 months. Thank you for being available to serve despite the inconvenience it caused your own family and children. In short, thank you for cheerfully showering mercy on “t,” Matt, and our family.

"r&s" Thank you for teaching about the body from Romans 12 in the week leading up to Matt's birth. Your faithful exhortation from the Word prepared us well for the challenges and blessings of the week. Thank you for sharing your gifts of teaching and encouragement with us.

"g&g" Thank you for sharing your adoption journey with us. Your prayers and encouragement brought us into contact with just the right adoption agency at just the right time. Without you, Matt would not be in our home today. Your words of support and your wise counsel "spur us on to love and good deeds."

"s&a" Thank you for coming to our house in the middle of the night to pray for Matt on the night of his birth. Your concern for Matt and our family persists in tangible form to this moment. As a result of your heart for "the least of these," your family was "home study ready" which allowed you to take Matt home from the hospital. Thank you for loving Matt as your own—waking up with him all night long, snuggling, holding, feeding, and helping us to make difficult medical decisions. Thank you for putting your life on hold for more than a week to care for "e&j," bring us dinner, lunch, and dinner again. You spent a night in the hospital and cried with us over Matt's terrible diagnosis. Then, you went home and stayed up all night to pray over us, when we were too exhausted to pray for ourselves. Thank you for wearing out your knees, your hands, and your feet on behalf of Matt. While your treasure waits in heaven, we here on earth are in awe of the love you have shown to us. Your faith, earnest counsel and love shout God's love to us no less clearly than if He himself had spoken. Thank you, also for letting me borrow your awesome "new" sling. Thank you, "d, k, n" for opening your hearts and arms to Matt with abandon and for giving him such a nice green blanket. You have generously contributed to our needs.

"h&a" Thank you for all the baby stuff: diapers, oils, etc. Thank you also for coming over to visit Matt and encourage us after we brought him home from the hospital. Thank you also for giving “s” that wonderful sling; it makes taking Matt along with us on walks a warm, cuddly possibility. Most importantly, thank you for your faithfulness in prayer!

"h&b" Thank you for loving Jesus and giving your hearts in service to His will. We have known you for only two weeks, and yet you have sacrificed precious family time, sleep, income, and anguished with us through this process. Only by God's grace and your obedience, could complete strangers become the dearest of brothers and sisters in a matter of 14 days. Thank you for not only believing that "pure and perfect religion is to take care of widows and orphans in their distress" but also living practically to that end. Your wise counsel and kindred spirits are truly a gift from God. We also continue to pray and thank God for your ongoing ministry to Matt's birthmother. Thank you, "i, a, l", for giving "e&j" the opportunity to laugh and play in the midst a very challenging time. Thank you for your service.

"c" Thank you for closing down your agency for nearly a week and working tirelessly and at great expense to yourself (and no expense to us) to find a home for Matt. We are grateful for your heart for the "least of these" and for your continued concern for Matt's birthmother. Thank you for sacrificing so much for someone so little.

"z&k" Thank you for leading us through the adoption/guardianship process by diligently working to establish a “culture of adoption” within our fellowship. We were encouraged by your willingness to literally standup in support of this little one. Thank you for encouraging “h” not to take our heavenly treasure from us in her attempt to protect us from the suffering inherent in assuming care of a terminally ill child. Your words ring in my ears each time I am tempted to prideful rejection of assistance on Matt’s behalf. We are learning to let others help Matt because whatever others do for Matt, they do for Jesus.

"r" Thank you for providing all of Matt's and our legal work for free. We pray that your reward will be great in heaven, as we have nothing of consequence to offer in return for this unmerited gift. Thank you for your bright light in a field, which often seems so dark. May God bless you and your family with the riches of His Spirit for your generosity and service.

"t&m" Thank you for calling to check on us and following up with us on Sunday. Thank you also for arranging for Matt's last minute dedication and as-needed additional meals. We appreciate you practical service and leadership.

“e&j" Thank you for giving fearless counsel on a very dark night. Thank you for urging us to "fight for Matt" when our knees were shaking and we were ready to turn tail and run. Thank for you encouraging us to be cognizant of our limitations and the hubris inherent in assuming we were or are equal to this situation. You are our iron that sharpens us on a daily basis. Without your constant love and the shelter of your prayers, are lives would be—as God knows all too well—lacking in the fruit of the Spirit for which you so valiantly advocate on our behalf. Thank you for covering Matt in prayers and the cutest clothes any little man could ever hope to wear. Tomorrow, Matt will wear the sweater that you sent for his dedication. I know the clothes are more for me than for Matt and I am ever so thankful that God has equipped you to give me strength in my weakness. Thank you for falling in love with Matt knowing that when he goes home your hearts will break along with ours. "Every perfect gift come from above from the Father of Lights with whom there is not shadow of turning;" you are our gifts from above. When all the drama subsides, thank you for continuing to talk and pray us through the mundane troubles of the day (and sleepless nights).

"b&m" Thank you for taking "e&j" on a moment's notice and caring for them late into the night. Your compassion and humility provided a safe place to land when the tragedy of Matt's diagnosis was too much to bare; we found comfort in your prayers and listening ears when our delight over a potential adoption turned to horror over Matt's unimaginable diagnosis. Thank you for covering Matt in visits, proffered babysitting, "church clothes," and hats. Dinner at your home was a lovely treat as well. Thank you for your practiced hospitality.

"cp&dj" Thank you for your lifelong ministry to those widowed by age and most recently to orphans abroad. By your example, you have showed us how to love those who may at first glance appear unlovely or unwanted. Thank you for your firm belief that Matt is a priceless treasure, whom you have welcomed with open arms into our family. That Matt bears both of our names in great part due to your wisdom with regard to his identity. Thank you for the visits, baby clothes, childcare, popcorn balls, dinner, fellowship, movies, and calls. You have given generously and taught us by example.

"r" Thank you for your compassionate wisdom with regard to how to best care for Matt. We called you late one night discouraged, and you encouraged us with the integrity of your faith and the knowledge of your profession. Given your tender heart for babies and years of practice, your advice carries significant weight. Your message the following morning was so encouraging, I stood in the kitchen and wept at God's kindness conveyed by your concern for this precious little one. Later that same day, your prayers for clarity with regards to Matt's diagnosis were answered. Thank you for your ongoing concern for Matt.

“p&l” Thank you for your diligent leadership, prayers, and fellowship over many years and now for Matt. Just seeing your faces each Sunday is a reminder of God’s faithfulness.

"n&j" Thank you for speaking my love language of preference, Starbucks, when I needed it most. Thanks for making time to stop by and visit or call. You have spoken just the right words at just the right time. Thank you for being available and merciful to us.

Amy & Kenny, Alyssa & Ian Thank you for literally walking through life with us. Thank for staring anxiously at the phone waiting for it to ring to tell us whether Matt would be coming home with us or not. Thank you for the texts, messages, and restlessness when the answer was not forthcoming for hours that turned into days. Thank you for being Christ's hands and feet on the pavement of our neighborhood and our lives by 1) taking care of "E&J" so well they don't know they are being "babysat", 2) spending hours at Target to purchase all of the essential baby items we didn't own and paying for them, 3) bringing gifts for "e&j," "s", and I so we wouldn't feel left out, 4) dinner, 5) burp clothes and bibs galore (can you believe I actually used them all in one day!), 6) adorable new outfits from three different stores—our baby shower in a bag, 7) walking and walking and walking so that the "baby blues" and the "oh, by the way your baby is dying blues" haven't had a chance to set in, 8) for winning the "war of words" in your lives and encouraging us to do the same, 9) for being vulnerable in your faith so that God's grace and repentance shine in your weakness, 10) for waiting an hour or so every time we walk because I cannot figure out how to get all four of us out of the house, 11) for making Matt the apple of your eye and your photographic genius, 12) for taking care of Matt so I can love on the other two and go to appointments, 13) for your kind concern for Matt's birthmother, 14) for making a blog for Matt so that other's can keep up with his progress, 15) for more clothes and a prescription from Target, 16) for patience when I don't answer the phone, 17) for the car seat, stroller, papasan, and most of all, for your partnership in the faith and the hospitality of your hearts. Thank you for loving Sydney and showing us that although crying may last for a night, joy will come in the morning as we allow the God of all comfort to comfort our souls. Thank you for celebrating Sydney's life in such a beautiful way that I am a tiny bit less afraid of how we will handle Matt's absence. You will walk with us down that path in a practical way leaving no detail uncared for, no song unsung, and no need unmet. Finally, when we or you fail to attain the good we so desire, you will lovingly direct us back to the cross of grace from which all blessing flow. Thank you for your faith, hope, and love, but most of all for your love.

"c&c" Thank you for being the speediest little seamstress (and seamstresses' husband) in the Southwest! I still cannot believe that Matt had a personalized blanket to come home to when he left the hospital. Thanks for the swing as well!

"g&a" Thank you for your prayers, the fanciest swing I have ever seen, and your persistent offers to help us. We truly feel that you have adopted Matt into your hearts as we have into ours. Your partnership in the faith is truly a gift, and we often thank God as we remember your kindness and the transparency of your faith.

"m&g" Thank you for calling the meal ministry for us! The impromptu cookies, frank fellowship, beautiful lullabies sung to our sweet boy, and the hospitality of your home encourage us daily. Thank you for "adopting" Matt into the heart of our fellowship.

"m&d" Thank you for your faithful prayers and kindred spirits. We welcome your thoughts and cherish your prayers on Matt's behalf. Your words and jokes give light to our path. Please let us know when we can come and give Matt his first glimpse of snow!

“m&l” Thank you for having a cup of tea with me while we talked through this wild ride. Thank you also for the snuggly blanket for me!

"b&d" Thank you for calling, leaving messages, bringing us lunch, watching "e&j", visiting, and alerting your prayer team to Matt's predicament. Your devotion to Matt and our family is evident in all your attention to us. "c" Thank you for the soft blue blanket you gave to Matt. He really seems to enjoy its warmth, especially at night or when we leave the house to brave the cold winter winds.

"gt" Thank you for coming to visit Matt, bring us lunch, and snuggle Matt in your experienced arms. He seemed to really enjoy resting in your arms. Thank you for loving on him.

"j" Thank you for the gifts all the way from texas for "e", "j" and Matt.

“j&k” Thank you for your faithful prayers and encouragement. We are so glad God brought you into our lives. Thank you, “t,” “j,” & “d” for showing “e&j” the sunny side of life.

"a&j" Thanks for the calls and prayers from the boarder lands. We love and miss you!

"f&a" Thank you for your wonderful card and the lovely surprise waiting inside. Earlier this week, my sister asked if I had gotten a letter my ne
phew had sent to "e," which reminded me that I hadn't checked the mail in two weeks! I don't know how the mailman fit the mountain of mail in our little mailbox, but I am thankful she didn't send it all back. In any event, the pile was daunting, but when I saw the card with your name on it, I knew I had a great reward waiting for me when I had finished. Thank you for your kindness shining like a little treasure in that big, old pile of bills and junk mail.

“a&k” Thank you for praying us through this process and offering a listening ear of continued support. We thank God for you each time we think of your joyful service to the body.

"st. louis sisters" Thank you for praying for us and offering your husbands expertise as well!!

“my prayer warriors” and "faithful blog readers" Thank you for faithfully continuing to pray for us. I am so thankful for your partnership in the faith both in the past and now.

Thank you for the amazing meals, "d&t," "n&family," "r&m," "p&t," “j&k,” and many others whose escape me b/c there are so many of you!

love,
"r" and "s"

Monday, February 2, 2009

matt's dedication






















"r" and "s" and their family dedicated little matty matt to Jesus on sunday. i was flooded with emotion, all kinds. from happiness to sadness to confusion about it all. i didn't realize it would be hard to watch all these other parents with their babies, praying for wisdom in raising them, while "r" and "s" are literally giving him to Jesus and praying for wisdom to take care of him during his short life. they pass out books and pamphlets to help with parenting, when none of that will be necessary for him. it was hard, but beautiful. we got to take a picture of "abuelo", whom matty matt is named after. i love the one of him kissing him. doesn't it look like matt is kissing him back?







































































"
I'll lend you for a little time a child of mine," He said.

For you to love the while he lives
And mourn for when he's dead.
It may be six or seven years
Or twenty-two or three,
But will you, till I call him back,
Take care or him for Me?
He'll bring his smiles to gladden you,
And should this stay be brief
You'll have his lovely memories as solace for your grief.
I cannot promise he will stay,
Since all from earth return,
But there are lessons taught down there
I want this child to learn.
I've looked this world over
In search for teachers true,
And from the throngs that crowd
Life's lanes, I have selected you.
Now will you give him all your love,
Nor count the labor vain,
Nor hate Me when I come to call to
Take him back again?"
I fancied that I heard then say,
"Dear Lord, Thy will be done,
For all the joy Thy child shall bring,The risk of grief we'll run.

We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known
Forever grateful stay.
But should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that come
And try to understand."

edgar guest

thanks ellen, for sending me that poem. i think it fits pretty well, for all of us with kids really. this baby, as bad has his prognosis is, will never not know love. he will learn love while he is here, if nothing else.