This song feels like my theme song for the year. It has been a big year for our family, and there have been days where we definitely don't feel strong enough to handle all of the changes and difficulties that we have faced. And we are so thankful that we don't have to be, nor are we expected to be, strong enough on our own. God's got this, and He is strong enough for all of us. Thank you, powerful God!
Strong Enough
Matthew West
You must, You must think I'm strong
To give me what I'm going through
Well, forgive me, forgive me if I'm wrong
But this looks like more than I can do on my own
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up, I'm not strong enough
Hands of mercy, won't You cover me?
Lord, right now I'm asking You to be
Strong enough, strong enough
For the both of us, yeah
Well maybe, maybe that's the point
To reach the point of giving up
'Cause when I'm finally, finally at rock bottom
Well, that's when I start looking up and reaching out
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up, I'm not strong enough
Hands of mercy, won't You cover me?
Lord, right now I'm asking You to be
Strong enough, strong enough
'Cause I'm broken, down to nothing
But I'm still holding on to the one thing
You are God and You are strong
When I am weak
I can do all things
Through Christ who gives me strength
I don't have to be strong enough
Strong enough
I can do all things
Through Christ who gives me strength
And I don't have to be strong enough
Strong enough, oh, yeah
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up, I'm not strong enough
Hands of mercy, won't You cover me?
Lord, right now I'm asking You to be
Strong enough, strong enough
Strong enough
Tuesday, October 11, 2011
Saturday, October 8, 2011
Day 2
We are still here, and we will probably be here for at least 3 more days. Thankfully, day 2 is going significantly smoother than day 1.
After some slight mishaps, we arrived Thursday night at 9:00 pm. They took 15 mls of blood at 11:00 pm. And at 1:30, baby boy finally gave up and went to bed. He slept until about 4:00, and he was up and at 'em again. I finally got him back to sleep at 5:30 and he woke up at 7:00. That equals 4 hours of sleep All. Night. Long. Yesterday morning, I was thinking that if this continues for the duration of our stay, we will all be very miserable by the time he was released! I do not know how a one year old baby can possibly function on that little sleep, but apparently, he can! As a person who greatly values sleep, it is very difficult for me to understand. Anyways, I got him to take a nap yesterday afternoon for about an hour. And then, due to testing, he was required to stay up until 9:30 pm for yet another poke. I am not sure why they insist on doing this at such odd hours, but they do. I am so thankful to report that he went to bed at 10 pm last night- a huge improvement! I had to wake him up at midnight for another feeding and meds, and then he slept until 5:00, woke to eat, then back to bed until 8 am!! And no one disturbed us! So it was a MUCH better night. Thank you for all the prayers for sleep. God answered with a big YES!
He has had hs blood drawn several times since our arrival. His blood work from Thursday night shows that his TSH is high. This is a thyroid test result that indicates hypothyroidism. However, his active T4 was normal, so he does not actually have hypothyroidism YET. Apparently, he is headed that direction. They ran a thyroid antibody test yesterday to see if it is autoimmune related. We won't get those result back until Monday. However, they do not believe this to be the cause of his FTT because his thyroid has been followed over the last year, and this is the first sign of a problem. Yet, he has been having problems growing all along. So, they do not feel they can blame his thyroid for his lack of growth. His blood test also showed slightly low blood sugar..interesting in a kid who eats every three hours all day long and had just eaten half an hour before the blood draw.
He is now taking in 1250 calories a day!! His bottles have been increased to a whopping 35 calories per ounce! The good news is that he gained some weight! It is odd though that it takes such a huge amount of calories for him to grow. Most babies his age need 45-50 calories per pound. He is up to 75 calories per pound. Maybe he just has a super fast metabolism!?!
Our main purpose for being here right now is to monitor how many calories he is eating, collect all stool samples, collect a lot of blood, and weigh him for three days. After they get a good idea of his caloric intake and growth, along with all the test results, they will try to figure out what needs to be done for him to grow or why he is not growing normally.
Please pray that the doctors watching him would be careful and wise. Pray that a good new game plan would be in the works, and not just more of the same. I am hoping something will be accomplished during this hospital stay to lead towards a more typical lifestyle for Beckett as a one year old. I really want this to be our turn around moment. I really want to know why it takes so much for my baby to grow. Pray for peace while we wait as We are anxious for answers. Please also pray for continued sleep because it makes this all much more tolerable for all of us! Also, please continue to keep big brother in your prayers!
Thank you for your prayers and encouragement! We are so thankful!
"Come to me all you who are weary and heavy-burdened, and I will give you rest." Matthew 11:28
After some slight mishaps, we arrived Thursday night at 9:00 pm. They took 15 mls of blood at 11:00 pm. And at 1:30, baby boy finally gave up and went to bed. He slept until about 4:00, and he was up and at 'em again. I finally got him back to sleep at 5:30 and he woke up at 7:00. That equals 4 hours of sleep All. Night. Long. Yesterday morning, I was thinking that if this continues for the duration of our stay, we will all be very miserable by the time he was released! I do not know how a one year old baby can possibly function on that little sleep, but apparently, he can! As a person who greatly values sleep, it is very difficult for me to understand. Anyways, I got him to take a nap yesterday afternoon for about an hour. And then, due to testing, he was required to stay up until 9:30 pm for yet another poke. I am not sure why they insist on doing this at such odd hours, but they do. I am so thankful to report that he went to bed at 10 pm last night- a huge improvement! I had to wake him up at midnight for another feeding and meds, and then he slept until 5:00, woke to eat, then back to bed until 8 am!! And no one disturbed us! So it was a MUCH better night. Thank you for all the prayers for sleep. God answered with a big YES!
He has had hs blood drawn several times since our arrival. His blood work from Thursday night shows that his TSH is high. This is a thyroid test result that indicates hypothyroidism. However, his active T4 was normal, so he does not actually have hypothyroidism YET. Apparently, he is headed that direction. They ran a thyroid antibody test yesterday to see if it is autoimmune related. We won't get those result back until Monday. However, they do not believe this to be the cause of his FTT because his thyroid has been followed over the last year, and this is the first sign of a problem. Yet, he has been having problems growing all along. So, they do not feel they can blame his thyroid for his lack of growth. His blood test also showed slightly low blood sugar..interesting in a kid who eats every three hours all day long and had just eaten half an hour before the blood draw.
He is now taking in 1250 calories a day!! His bottles have been increased to a whopping 35 calories per ounce! The good news is that he gained some weight! It is odd though that it takes such a huge amount of calories for him to grow. Most babies his age need 45-50 calories per pound. He is up to 75 calories per pound. Maybe he just has a super fast metabolism!?!
Our main purpose for being here right now is to monitor how many calories he is eating, collect all stool samples, collect a lot of blood, and weigh him for three days. After they get a good idea of his caloric intake and growth, along with all the test results, they will try to figure out what needs to be done for him to grow or why he is not growing normally.
Please pray that the doctors watching him would be careful and wise. Pray that a good new game plan would be in the works, and not just more of the same. I am hoping something will be accomplished during this hospital stay to lead towards a more typical lifestyle for Beckett as a one year old. I really want this to be our turn around moment. I really want to know why it takes so much for my baby to grow. Pray for peace while we wait as We are anxious for answers. Please also pray for continued sleep because it makes this all much more tolerable for all of us! Also, please continue to keep big brother in your prayers!
Thank you for your prayers and encouragement! We are so thankful!
"Come to me all you who are weary and heavy-burdened, and I will give you rest." Matthew 11:28
Wednesday, October 5, 2011
Back to the hospital
Well, here we are, it is a year later, and we are headed back to the hospital. Last October, was when our Beckett's health journey began. How surreal to be in the same place a year later.
We had an appointment with our nurse practitioner at TCH yesterday, and after looking at his growth curves, she called the doctor to come see us. Because both his weight and height have leveled off over the last few months, they feel it is time for more testing and observation. He has gained weight, but it just is not as much as typical. His height has not increased much at all since June. At one point his height was in the 50th percentile and it has steadily dropped. While is weight and height are not on the charts, the good news is that his head has maintained it's curve at the 85th percentile! Ha! I took my sweet baby to try on one year old birthday hats, and none of them fit him. They were all to small! Oh, the irony...
Beckett will be admitted to Texas Children's on Thursday, and they will begin running more tests Friday morning...and with the way things work at hospitals, I am sure it will be bright and early! Uggg...because I am not a morning person. They are going to re-run many of the tests that we have done in the past to make sure nothing was missed. They are also going to do some new tests including one that will test how many calories his body burns in a day. That should be interesting. I have no idea how on earth that works, but I will be sure to let you know once I learn more about it. I am quite curious about that test. They will also count every calorie that goes in, and test everything that comes out for things such as malabsorption. This has been checked in the past, but they think it is worthwhile to collect all of his stool for at least 72 hours to make sure nothing is missed. The return of the feeding tube is a possibility, but they do not know how helpful that will be considering input is not a problem for Beckett. He does take a good amount of formula a day, about 1050 calories. This is significantly more calories than a baby his size should need to grow. As far as genetics go, his chromosome testing was all normal. So that is not an explanation for his small size. I will try my best to keep you updated throughout the process over the next few days.
Please be praying for Beckett and our family during this admission. Our prayer right now is for answers...answers that would lead to healing...healing that might land us in Italy. Please pray for emotional and physical endurance as we are all quite exhausted. Pray for wisdom and attention to detail for the doctors as they continue trying to figure out pieces to the puzzle. Please pray that just the right test would be ordered that would find exactly what we need to know about Beckett's little body. I spoke with the geneticist yesterday, and she said it is like looking for a needle in a haystack. Even picking each test can be difficult. Please pray for Beckett's body as it is subjected to more poking and testing. And sleep...please pray that my difficult sleeper would sleep in the hospital. Honestly, I am quite concerned about this as Beckett is very particular about his sleep. And he is very hit or miss...so prayers for sleep would be much appreciated. And our Brant, please be praying for him. Pray that he does not feel lost in all of this. Pray that he does not feel too anxious or worried as he is a very empathetic 4 year old. Please pray that Kyle and I will know how to balance Brant's needs with Beckett's needs.
Also, a quick update on Cincinnati- about two weeks ago, they decided they wanted Beckett's actual pathology slides sent to them for their own pathologists to look at. So after signing lots of paperwork, TCH sent the pathology slides and CCHMC received them last week. We are now waiting for the pathologist to look over the slides, and then we hope to hear the plan from the doctor there.
And in other unrelated news, Brant's new school year has been off to a great start. We are so thankful that he seems to really be enjoying school. He tells us that his "teachers make him happy." He willingly jumps out of the car in the drop off line (yes, I love it!) and walks into school with his backpack like a big boy. He has made some new friends, and I know it has been a positive experience. What a blessing and a praise! It is so wonderful to feel like he has a fun, predictable place to go while things at home are a bit chaotic. We are thankful!
Thanks again for your prayers! Praying for answers and healing during this week. Thankful for our God who is holding us in his hands during all of this testing. Thankful that God is BIGGER than this! I am so thankful that my help comes from our Lord the Creator who never sleeps.
We had an appointment with our nurse practitioner at TCH yesterday, and after looking at his growth curves, she called the doctor to come see us. Because both his weight and height have leveled off over the last few months, they feel it is time for more testing and observation. He has gained weight, but it just is not as much as typical. His height has not increased much at all since June. At one point his height was in the 50th percentile and it has steadily dropped. While is weight and height are not on the charts, the good news is that his head has maintained it's curve at the 85th percentile! Ha! I took my sweet baby to try on one year old birthday hats, and none of them fit him. They were all to small! Oh, the irony...
Beckett will be admitted to Texas Children's on Thursday, and they will begin running more tests Friday morning...and with the way things work at hospitals, I am sure it will be bright and early! Uggg...because I am not a morning person. They are going to re-run many of the tests that we have done in the past to make sure nothing was missed. They are also going to do some new tests including one that will test how many calories his body burns in a day. That should be interesting. I have no idea how on earth that works, but I will be sure to let you know once I learn more about it. I am quite curious about that test. They will also count every calorie that goes in, and test everything that comes out for things such as malabsorption. This has been checked in the past, but they think it is worthwhile to collect all of his stool for at least 72 hours to make sure nothing is missed. The return of the feeding tube is a possibility, but they do not know how helpful that will be considering input is not a problem for Beckett. He does take a good amount of formula a day, about 1050 calories. This is significantly more calories than a baby his size should need to grow. As far as genetics go, his chromosome testing was all normal. So that is not an explanation for his small size. I will try my best to keep you updated throughout the process over the next few days.
Please be praying for Beckett and our family during this admission. Our prayer right now is for answers...answers that would lead to healing...healing that might land us in Italy. Please pray for emotional and physical endurance as we are all quite exhausted. Pray for wisdom and attention to detail for the doctors as they continue trying to figure out pieces to the puzzle. Please pray that just the right test would be ordered that would find exactly what we need to know about Beckett's little body. I spoke with the geneticist yesterday, and she said it is like looking for a needle in a haystack. Even picking each test can be difficult. Please pray for Beckett's body as it is subjected to more poking and testing. And sleep...please pray that my difficult sleeper would sleep in the hospital. Honestly, I am quite concerned about this as Beckett is very particular about his sleep. And he is very hit or miss...so prayers for sleep would be much appreciated. And our Brant, please be praying for him. Pray that he does not feel lost in all of this. Pray that he does not feel too anxious or worried as he is a very empathetic 4 year old. Please pray that Kyle and I will know how to balance Brant's needs with Beckett's needs.
Also, a quick update on Cincinnati- about two weeks ago, they decided they wanted Beckett's actual pathology slides sent to them for their own pathologists to look at. So after signing lots of paperwork, TCH sent the pathology slides and CCHMC received them last week. We are now waiting for the pathologist to look over the slides, and then we hope to hear the plan from the doctor there.
And in other unrelated news, Brant's new school year has been off to a great start. We are so thankful that he seems to really be enjoying school. He tells us that his "teachers make him happy." He willingly jumps out of the car in the drop off line (yes, I love it!) and walks into school with his backpack like a big boy. He has made some new friends, and I know it has been a positive experience. What a blessing and a praise! It is so wonderful to feel like he has a fun, predictable place to go while things at home are a bit chaotic. We are thankful!
Thanks again for your prayers! Praying for answers and healing during this week. Thankful for our God who is holding us in his hands during all of this testing. Thankful that God is BIGGER than this! I am so thankful that my help comes from our Lord the Creator who never sleeps.
I lift up my eyes to the hills--
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip-
he who watches over you will not slumber;
indeed he who watches over Isereal
will neither slumber nor sleep.
Psalm 121:1-4
Thursday, September 29, 2011
Happy Birthday to Beckett!
Happy Birthday, Beckett! You are ONE today! We are so proud of you and all you have accomplished over this last year. You are an amazing little guy and quite the trooper!
A little about you--
You love music of all kinds...especially Praise Baby! If you are upset or fussy, we just pop in Praise Baby, and it miraculously helps you calm down. You and daddy enjoy playing the guitar together. You really love TV--maybe a bit too much! You like to dance, dance, dance! (This is very cute and I hope to post a video of it soon). One of your favorite pastimes is picking up the crumbs off of the kitchen floor and handing them to me. You also like to play with your cans of Elecare! You have recently discovered the dvd drawer and could stand there forever pulling out the movies one by one.
You have learned so much! You have learned to crawl on your hands and knees and you have gotten your first tooth! You are pulling up to a stand and may cruise a step or two...especially if there is a remote control in your view. You go for any electronic...cell phones, phones, iPads, baby monitors, remotes. That remote control is how we got you to crawl!! :) (Something I never would have done with baby #1 because remotes are not toys, but, well...it worked and you are crawling!) You like to splash, splash in the bath tub, but prefer your baths to be pretty quick. You really like your bottle now, and will absolutely not except formula from anything but a bottle. Sippy cups just tend to get thrown back at me now, although there was a point in your life where you did take it. Not quite sure what changed your mind... You drink 6-7 bottles a day of your Elecare. You have learned to sleep a 5 to 6 hour stretch at night! Whoo Hoo!
You are about 16.4 lbs and 28 inches tall. Your clothes range in size from a 0-3 month to a 9 month just depending on the brand and what style of clothing it is. You wear a size 2 diaper when you wear a sposie, and we have moved up to the "infant" rise on your cloth diapers.
Your smile lights up the room....really. You melt people's hearts. Your have such a big big personality. You show your excitement by laughing, panting, and kicking your legs! Your laugh is absolutely contagious, and you laugh until you have to catch your breath.
You love your big brother so much that you cry when he gets out of the car in the mornings for school. You love learning from him, and he loves to teach you new things. He was so excited to run in your room yelling "Happy Birthday!" this morning! He loves you!
We all love you so much!! You are a beautiful boy and we are so blessed to have you. Happy 1st Birthday, Sweet Beckett!
Wednesday, September 28, 2011
Welcome to Holland
A year ago today, I signed Brant up for extended day at school so that I could rest and sleep ALL day in preparation for welcoming Beckett into the world the next morning. I knew it would be my last chance to rest for a long time...I just didn't know it would be this long! If only I would have known the extent of my upcoming sleep deprivation, I would have taken much more than a day!
Tomorrow is Beckett's birthday, and we are so excited! We feel so blessed to have him as our son. He has brought nothing but good and priceless changes to our family. We are so thankful to be his parents!
To be honest with you, I can hardly remember his birth day...or week. We looked at pictures and watched videos from the day Beckett was born last night, and it felt like I was watching something for the first time...never having experienced it before, or maybe it just feels like a dream. Who knew that it would take one month and a feeding tube for him to be as big as he was on that first day of life. Who knew that this year would test us and "grow" us in huge ways. But then no one knows what each year, each day will hold. Only God. And as a sweet friend said, "He's got this."
That day feels worlds away.
And perhaps it is because we have entered a different world this year. We have new knowledge that I never imagined acquiring. I have learned about medical conditions that I never knew existed, and my heart has grown. I have watched my baby cry when there was nothing I could do to help, and my heart has ached. I have strapped my baby down for test after test, and my heart has longed for answers. I now know all about home health companies, feeding tubes, too many floors of the children's hospital, too many medicines, too little sleep. I have met moms who are going through painful heartache, moms who face much bigger giants than we do. Click here for more on this all too familiar world. My world has grown and changed this year.
This month has been a long month (explaining my complete lack of blogging) as we have been spending a lot of time doing further testing. We made 5 trips to TCH this month for appointments and tests each one followed by weeks of waiting. We are currently waiting for more results. I have realized as Beckett's first birthday nears that our sweet baby has some special needs. My little man cannot eat birthday cake or anything thicker than liquid for that matter. I have to explain this at each nursery drop off, grocery stores, restaurants. I get looks of shock when people learn how old he is. And he cannot poop (sorry, but it's the truth) without his twice daily Senna (ex-lax) and miralax. So yes, considering our baby cannot eat, poop, or grow (and his sleeping isn't great), which is what babies are expected to do, I suppose he has some special needs. His digestive system does not work as it should. We still do not know if this is something he may "grow out of" or if this will be a life-long battle for him, but for now, I think this essay sums it up well.
____________________________________________________________________
Welcome to Holland
by Emily Perl Kingsley c1987 All rights reserved
I am often asked to describe the experience of raising a child with [special needs] - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I am supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing to remember is that they haven't take you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. (emphasis mine)
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of you life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
BUT...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
___________________________________________________________________
I think that essay describes a lot of how this first year with Beckett has felt. He is amazing, beautiful, precious, and unexpected. We do not feel that we are really in Holland, but we are not in Italy...maybe Switzerland?
And while there are days that I miss Italy-- because I am tired and it is hard to watch everything be more of a struggle for your child than typical--, and I may feel surprised that we are here (wherever that here may be) I am comforted by the fact that this does not surprise God one bit. While landing in Holland or Switzerland may come as a shock to me and the thousands of other parents who are here for some reason or another, it does not shock our God. Our all-knowing Father planned this for my family's life.
Psalm 139:13-14, 16 says For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well....Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
And I find comfort in that. Have there been days of tears and hurt? Yes. Do I fully understand why my child is facing ongoing health complications? No. But being wrapped in God's love has brought peace to those days. Landing here (wherever that might be...for any of us, really) was not a mistake.
This year has been hard. Watching my baby go through test after test, all the waiting, wondering why he is not growing, but I do believe the pain will go away. Because I am not fighting this battle alone.
This is what the Lord says to you: 'Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's....You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to fave them tomorrow, and the Lord will be with you. 2 Chronicles 20:15, 17
I also know the pain will go away because this world-- not Italy, not Holland, not Texas-- is NOT our home. It is not our final destination. Revelation 21:3-4 says And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." As a Christian, the pain will go away. Because this place is not meant to be our home.
Tomorrow is Beckett's birthday, and we are so excited! We feel so blessed to have him as our son. He has brought nothing but good and priceless changes to our family. We are so thankful to be his parents!
To be honest with you, I can hardly remember his birth day...or week. We looked at pictures and watched videos from the day Beckett was born last night, and it felt like I was watching something for the first time...never having experienced it before, or maybe it just feels like a dream. Who knew that it would take one month and a feeding tube for him to be as big as he was on that first day of life. Who knew that this year would test us and "grow" us in huge ways. But then no one knows what each year, each day will hold. Only God. And as a sweet friend said, "He's got this."
That day feels worlds away.
And perhaps it is because we have entered a different world this year. We have new knowledge that I never imagined acquiring. I have learned about medical conditions that I never knew existed, and my heart has grown. I have watched my baby cry when there was nothing I could do to help, and my heart has ached. I have strapped my baby down for test after test, and my heart has longed for answers. I now know all about home health companies, feeding tubes, too many floors of the children's hospital, too many medicines, too little sleep. I have met moms who are going through painful heartache, moms who face much bigger giants than we do. Click here for more on this all too familiar world. My world has grown and changed this year.
This month has been a long month (explaining my complete lack of blogging) as we have been spending a lot of time doing further testing. We made 5 trips to TCH this month for appointments and tests each one followed by weeks of waiting. We are currently waiting for more results. I have realized as Beckett's first birthday nears that our sweet baby has some special needs. My little man cannot eat birthday cake or anything thicker than liquid for that matter. I have to explain this at each nursery drop off, grocery stores, restaurants. I get looks of shock when people learn how old he is. And he cannot poop (sorry, but it's the truth) without his twice daily Senna (ex-lax) and miralax. So yes, considering our baby cannot eat, poop, or grow (and his sleeping isn't great), which is what babies are expected to do, I suppose he has some special needs. His digestive system does not work as it should. We still do not know if this is something he may "grow out of" or if this will be a life-long battle for him, but for now, I think this essay sums it up well.
____________________________________________________________________
Welcome to Holland
by Emily Perl Kingsley c1987 All rights reserved
I am often asked to describe the experience of raising a child with [special needs] - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I am supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing to remember is that they haven't take you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. (emphasis mine)
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of you life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
BUT...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
___________________________________________________________________
I think that essay describes a lot of how this first year with Beckett has felt. He is amazing, beautiful, precious, and unexpected. We do not feel that we are really in Holland, but we are not in Italy...maybe Switzerland?
And while there are days that I miss Italy-- because I am tired and it is hard to watch everything be more of a struggle for your child than typical--, and I may feel surprised that we are here (wherever that here may be) I am comforted by the fact that this does not surprise God one bit. While landing in Holland or Switzerland may come as a shock to me and the thousands of other parents who are here for some reason or another, it does not shock our God. Our all-knowing Father planned this for my family's life.
Psalm 139:13-14, 16 says For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well....Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
And I find comfort in that. Have there been days of tears and hurt? Yes. Do I fully understand why my child is facing ongoing health complications? No. But being wrapped in God's love has brought peace to those days. Landing here (wherever that might be...for any of us, really) was not a mistake.
This year has been hard. Watching my baby go through test after test, all the waiting, wondering why he is not growing, but I do believe the pain will go away. Because I am not fighting this battle alone.
This is what the Lord says to you: 'Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's....You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to fave them tomorrow, and the Lord will be with you. 2 Chronicles 20:15, 17
I also know the pain will go away because this world-- not Italy, not Holland, not Texas-- is NOT our home. It is not our final destination. Revelation 21:3-4 says And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." As a Christian, the pain will go away. Because this place is not meant to be our home.
"Great and marvelous are your deeds,
Lord God Almighty.
Just and true are your ways,
King of the nations.
Who will not fear you, Lord,
and bring glory to your name?
For you alone are holy.
All nations will come
and worship before you,
for your righteous acts have been revealed."
Revelation 15: 3-4
Monday, September 19, 2011
A tooth! A tooth!
See that little glimmer of white on his bottom gum? Yes, it's his first tooth! It broke through on September 9. Yay! And let me tell you, there was a lot of hard work put into that one little tooth breaking through the gums...a lot. It is definitely worthy of a celebration!
We are celebrating the "little things" (and this literally is LITTLE) while we wait. Please continue to pray for Beckett's health and for the doctors who are treating him. It appears as if his c.diff has returned, or there is something else going on in his colon. His poor colon just can't catch a break! Also, we are so thankful that we were able to see the geneticist nearly 3 months sooner then expected! God answered that prayer with a big YES, and we saw this specialist a little over a week ago. We are now just waiting--yes, waiting, AGAIN--for results from some blood work. Please be praying for our family during all of this waiting. I truly believe God is working in my heart during this time of waiting, and He must definitely want me to learn patience, which has never been a strong point of mine. He is teaching me to surrender to Him and trust Him. I am learning not to live in a state of anxiety, but to remember that our God already knows exactly what is in Beckett's (and everyone's) future. He planned it out perfectly for our son, and designed our sons for His purpose. I find great comfort in knowing that God He is taking care of sweet Beckett and the rest of us!
I am your creator. You were in my care even before you were born. Isaiah 44:2a (CEV)
Tuesday, September 6, 2011
Waiting Once Again
Here we are. Waiting once again.
I spoke with Beckett's new nurse at Cincinnati Children's Hospital Medical Center today, and we discussed his case history. She gave me an idea of how the process worked as an out-of-state patient and some scenarios of what we can expect to happen. It definitely gave us a better picture of how this could all play out. She has now passed Beckett's chart on to the doctor they feel best fits our needs, and we can expect to hear back from them next week with a plan of what needs to happen next. More than likely, we will be headed to Cincinnati sometime this fall. It is rare that they review a case and decide that everything is being done exactly how they would do it.
We had a busy GI day today as we also had an appointment with our doctor at TCH. Once again, they were not too pleased with Beckett's rate of growth. He is gaining, which is a praise, but we do need him to gain more! So please keep praying that he will grow! They bumped his formula up to a toddler Elecare formula, now concentrated to 30 calories per ounce (as opposed to the typical 20 calories per ounce in infant formula.) That means we will be flying through these little cans of formula even quicker! And he gets to try vanilla flavored formula which should add some excitement to his day and a nice change of pace to his taste buds!
I am thankful that his GI team at TCH is very understanding about our second opinion with Cincinnati, and they are willing to help in any way by doing any necessary blood tests, stool tests, etc. The NP actually looked a bit impressed that we were working with CCHMC...like she knew I had been doing my research. They are also looking forward to our appointment with the Geneticist here at TCH, as that will help look for rare metabolic disorders that could be causing his failure to thrive.
It is a definite possibility that his lack of weight gain is in direct correlation to his motility disorder, but they agree that it is good to investigate or rule out other possibilities.
So this week, we wait. And honestly, I am quite nervous about it. In a week, we could have new information or be on a path that will change my little boy's health and quality of life. This has been quite a process already, months quietly in the working, months of searching for just the right place to take him, months of waiting for him to "prove" his need for more intervention. And now here we are, a week out from the possibility of more help and more answers.
Over this next week, my prayer is that I can wait with purpose. I can use my time to praise God and love God with all of my heart. I can use my time to teach my boys about God's love and God's truth. I can spend my time in prayer for my family, our dry and "thirsty" state, and those around me. I do not want to spend my time in a ball of anxiety- nervous, exhausted and on edge. I do not want to live in worry while I wait. This is all much easier for me to say then to actually do.
Please pray for the doctor who is doing the final review of Beckett's charts and tests. Pray for patience and wisdom. Pray that they might find the underlying root to his difficulties if there are any and that they would have some solutions to help him grow and thrive. Pray that nothing would be overlooked. Please pray also that all travel arrangements would line up easily in the even that we need to travel. Please pray for our hearts while we wait.
Thank you so much for your prayers.
I spoke with Beckett's new nurse at Cincinnati Children's Hospital Medical Center today, and we discussed his case history. She gave me an idea of how the process worked as an out-of-state patient and some scenarios of what we can expect to happen. It definitely gave us a better picture of how this could all play out. She has now passed Beckett's chart on to the doctor they feel best fits our needs, and we can expect to hear back from them next week with a plan of what needs to happen next. More than likely, we will be headed to Cincinnati sometime this fall. It is rare that they review a case and decide that everything is being done exactly how they would do it.
We had a busy GI day today as we also had an appointment with our doctor at TCH. Once again, they were not too pleased with Beckett's rate of growth. He is gaining, which is a praise, but we do need him to gain more! So please keep praying that he will grow! They bumped his formula up to a toddler Elecare formula, now concentrated to 30 calories per ounce (as opposed to the typical 20 calories per ounce in infant formula.) That means we will be flying through these little cans of formula even quicker! And he gets to try vanilla flavored formula which should add some excitement to his day and a nice change of pace to his taste buds!
I am thankful that his GI team at TCH is very understanding about our second opinion with Cincinnati, and they are willing to help in any way by doing any necessary blood tests, stool tests, etc. The NP actually looked a bit impressed that we were working with CCHMC...like she knew I had been doing my research. They are also looking forward to our appointment with the Geneticist here at TCH, as that will help look for rare metabolic disorders that could be causing his failure to thrive.
It is a definite possibility that his lack of weight gain is in direct correlation to his motility disorder, but they agree that it is good to investigate or rule out other possibilities.
So this week, we wait. And honestly, I am quite nervous about it. In a week, we could have new information or be on a path that will change my little boy's health and quality of life. This has been quite a process already, months quietly in the working, months of searching for just the right place to take him, months of waiting for him to "prove" his need for more intervention. And now here we are, a week out from the possibility of more help and more answers.
Over this next week, my prayer is that I can wait with purpose. I can use my time to praise God and love God with all of my heart. I can use my time to teach my boys about God's love and God's truth. I can spend my time in prayer for my family, our dry and "thirsty" state, and those around me. I do not want to spend my time in a ball of anxiety- nervous, exhausted and on edge. I do not want to live in worry while I wait. This is all much easier for me to say then to actually do.
Please pray for the doctor who is doing the final review of Beckett's charts and tests. Pray for patience and wisdom. Pray that they might find the underlying root to his difficulties if there are any and that they would have some solutions to help him grow and thrive. Pray that nothing would be overlooked. Please pray also that all travel arrangements would line up easily in the even that we need to travel. Please pray for our hearts while we wait.
Thank you so much for your prayers.
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