"I don't know how you do it."
We cannot tell you how many times we have heard those words in the last 3 1/2 years, especially the last 2 days. And over the last 3 1/2 years we have tried repeatedly to come up with a response that truly encompasses the real answer of "how we do it." Craig and I have discussed it several times and nothing really sounds right.
As we sit here, almost 24 hours after one of the scariest moments in our lives, I am again trying to figure out how to respond.
And it is simply...WE don't do it. HE does.
Who is HE? He is the Great Physician. He is the Wonderful Counselor. He is the Prince of Peace. He is the Almighty God, Creator of Heaven and Earth.
How does HE? If you really open your eyes, not just your physical eyes but the eyes of your heart, you can see how He does so many things. In our case, HE does this through massive things like facebook campaigns for prayer and small things like a hug from a friend. HE does this through family-like relationships with amazing doctors and nurses to a text from some unknown number on my phone. HE does this through the "right" devotional on the "right" day to an encouraging email from a far away friend I've never even met. HE does this by placing the loving, devoted, Christian doctors and nurses on our care team who not only say they are praying for us but we know actually do pray to an amazing hometown community who goes out of there way to support all of their citizens. HE does this through the prayers of sweet children to the sighting of a t-shirt with your name on it on someone you don't even know & floods of people you do know. HE does this by miraculously pulling the infection from a person's body to keeping a tiny germ away that we don't even know about. HE does this by instantly answering a prayer for peace and understanding to sometimes even physical, "I can see this with my own eyes" signs of a miracle. HE does this, WE do not.
So how do WE keep SMILES on our faces? If the last paragraph isn't enough, there's one more reason and its very simple...we choose too. Yes, it is a choice. A daily choice. Are there days when we don't want to get out of bed because it all seems too much? YES. Do we sometimes ask why? Most definitely. Are hospital couches our favorite places to sleep? Uh, that'd be a big negatory. Is it easy to repeat the answers to the 900 questions of the admit form in every single doctor's office and everytime a new doctor, nurse, nutritionist, lab tech, etc. comes on duty? No. Do we like to see the tears in our other child's face and know that he will be in, while very capable, someone else's care for an undetermined amount of time? Of course, not. But in all of that we, as a family, know that we only have one life on this earth and our purpose is not to feel sorry for ourselves and make all those around us miserable but to share love and happiness with everyone we come in contact with on a daily basis. But most of all, our purpose is to glorify God in EVERYTHING we do.
Are we perfect? Not even close. There are many things that we struggle with and I personally want to offer a public apology to those I have hurt when I forgot to make the choice to SMILE on a day where things were overwhelming. I know I have spoken unkind words, honestly, without meaning to most of the time. And in those times I did mean to, I hope I have come and personally and quietly apologized. If not, I will and please confront me if I haven't.
Have we always felt this way? Um, well I'll spare you the details but the short answer is no. While personally I have had a relationship with Jesus Christ since I was 8 years old, there have been times I knew He was there, I just tried to do things on my own and only went to Him when I "needed" something. He doesn't always have to use a dramatic, drastic situation to remind us Who is in control but to some of us that are slightly more stubborn than the rest, He can choose to.
(Stop: Do I think that He CAUSED Brynne to have a rare genetic disorder that almost no medical professional has ever heard of just to bring us closer to Him? No, BUT I do know that He promises ALL things work together for good for those who love Him and are called according to His purpose. And boy, do we know He has an amazing plan in all of this.)
All of this is to really to say again, if you ever wonder "how we do it?" The true answer is...
We don't, HE does.
Yes, it may sound like an overused quote you might find on pinterest or something you might hear from a pulpit. But we pray that through all of this YOU see HIM not us. For we are nothing without HIM. And I pray that some where, some how He has used us to make a difference in the life of just one person.
So...make the choice...everyday...to open your eyes and see how & what HE does for you. HE has His hand in every single moment and situation of every single day.
Make the choice...everyday...to see the good He has done before you look for the bad that all us silly humans have caused.
Make the choice...everyday...to look for ways you can give to others instead of how you can help yourself.
Make the choice...everyday...to let HIM do it and give Him the glory for it.
Make the choice...everyday...to SMILE.
because you never know who's life He'll use you to impact.
1 Peter 4:10
Saturday, May 26, 2012
Thursday, March 1, 2012
You've got questions? We've got...well, a few answers.
Note: Go grab a cup of coffee or something...this is a long one :)
"Mommy, I awate!" This morning I cherised those words more than ever. March 1, 2012. It's not her birthday, it's not my birthday or anyone else's that I can think of right now. It's not a national holiday. It's the day, that 3 years ago we took our sweet, barely 6 lbs, 10 week old daughter to the hospital for the first time because she chouldn't keep anything down or in. The same day we began a journey that has taken us down many roads we still look back and think "WOW! Thank you Lord for getting us to the next turn. and the next, and the next."
I'll never forget calling my parents in the middle of the night to come get Koda. I'll never forget Craig telling me earlier in the night that he thought we should go to the ER and me hoping and praying that we didn't really need to but a little while later it was all too clear. I will also never forget when we got to the hospital, the looks on the faces of the nurses when they saw my Brynne. One of those nurses, I have known since childhood. I've told her a million times how thankful I am that she was there. God is amazing in placing the right people in the right place at the right time. Noone told us then, but a few months later one of our doctors told us how close we were to losing her that day. In our hearts, we knew.
Many of you already know of the 40 something times we've visited our vacation home (aka Covenant Children's Hospital) and the multiple surgeries, procedures, blood transfusions, etc. that have happened through the last 3 years and we are so very grateful for everyone of you that has traveled with us on this journey, especially those in prayer.
Since March 1, 2009, there have been multitudes of questions and as the title of this post suggests...we have a few answers. In the world of rare diseases and syndromes, Brynne is one of the "lucky" ones. She has a diagnosis. My heart aches everytime I read a facebook or blog post or hear of another child/family that is trying to find a diagnosis. Craig and I can attest to the feelings of inadequacy, guilt, and utter hopelessness as you grasp at every word a doctor says it MIGHT be this or it MIGHT be that or we'll run this test or that test and they keep coming back with "Well, it's not what we thought it was, but we'll keep trying." I can't tell you the peace we have just knowing what we are dealing with. Thank you Lord for giving us the name.
Yesterday was Rare Disease Day and we asked our friends and family to wear jeans (for genes) and zebra print (for rare & different) in support of Brynne and all those living with a rare or undiagnosed diseases. It is an understatement to say that we are overwhelmed at the response. We are so grateful for those who support us everyday. This little town of Post (& West Texas) has the biggest heart...not just for us but for anyone who calls this place HOME. Not everyone took pictures but we know of people of all ages and walks of life that wore their genes and zebra print (or Brynne's Smiles shirts) yesterday from Post Elementary to Snyder 4th Grade (& Borden County, Lubbock, Amarillo, etc), from game wardens to therapists, from family & friends to people that have never met Brynne.
"Thank you" doesn't seem like enough to say. Someone needs to come up with words that encompass the thankfulness we have in our hearts.
Yesterday also brought up something else...a lot of questions. So I thought I would answer the questions we get most often. We're always happy to answer any questions you have...that is, if we actually have the answer. Earlier this month, was Feeding Tube Awareness Week. Brynne and I went to Koda's Kindergarten class and did a presentation. They had some great questions and we loved answering them!
Ok...here are the questions and the answers we have.
1. What's the diagnosis? Trichohepatoenteric Syndrome or THES
2. What does that mean? Basically, her body doesn't know what to do with food. It also involves her liver, heart, and immune system.
3. Can she eat? Yes, she can eat whatever (well, except pineapple which we recently discovered she is allergic to) and however much she wants to, we just don't always know how many diapers we'll have after she eats :) Her favorites are "lello" chips (tortilla chips) and guacamole, ranch dip, strawberries, red bell peppers, and cheese. She's not really in to sweets but she's getting better.
4. How'd she get THES? She was born with it. It is literally in her genes. Gene TTC37 to be exact. Craig and I both have a mutation in this gene. Our mutations are different (which proves we aren't related) but we both gave the mutated copy to Brynne. I actually gave the mutated copy to Koda too but Craig's good gene overrrides it.
5. Were there any indications/complications during pregnancy? Nope, not a single one. But it wouldn't have mattered if we had known anyway...ALL children are a blessing from God.
6. Will she grow out of it? No.
7. How many other people have THES? According to a paper written in 2010, THES is estimated to affect 1 in every 500,000 live births. The study had only 12 participants. As far as we know, there aren't many more than those 12 and we're pretty sure Brynne is currently the only one in the US.
8. What is the prognosis? We believe it is just like anyone else with or without a disease, it is however long God decides.
9. Will her hair grow? Well, we sure hope so. The "crazy hair", as we call it, is consistent with THES and has become one of her trademarks!
10. Is she limited to where she can go/what she can do? We'd like to say no, but honestly because of her immune deficiency she does not go to daycare. We try to keep her away from those that have anything contagious. Also, because of her "tubes" & "buttons", she is limited sometimes on her ability to do things like get wet or run and play whenever she wants. We've arranged her feeding schedules to be at night while she is sleeping so the limits are as little as possible.
11. What are those tubes? Well, she has a port and a g-button. Both are used for feeding and medicine. The port is like a permanent IV and she gets TPN (her food) everyday for 14 hours but we can "unhook" the part that you can see so she can take a bath, etc. The g-button allows us to put things directly in her stomach like formula and especially those things that are hard for her to swallow like medicine.
12. Has she experienced any developmental delays? The only delay she has experienced is in her ability to swallow food which she is in therapy for and has made great progress over the last four months. She did walk, talk, etc a little later than when Koda did but all children are different.
13. What made you think something was wrong? When Brynne was four days old, she started vomiting. At first, we thought nothing of it but as it continued and the number of diapers we had to change increased, as well as the fact that she wouldn't gain weight were all indications that something was up.
14. What is her biggest struggle? To gain weight. (don't we wish we all had the problem :) ) With her body not wanting to absorb the nutrients like the rest of us do, she is dependent on TPN that goes directly in to her blood stream and provides nearly all of her nutritional needs.
Ok, if you've made it this far you deserve some sort of award! I hope this sheds a little light on our sweet Brynne Brynne and what she deals with everyday (and she does it with a SMILE on her face). If you have any other questions, please feel free to ask.
Again, I cannot express the deep gratitude we have for each one of you that has supported us along this journey. Our God has truly blessed us in so many ways and we praise Him daily for allowing us this amazing opportunity to share His faithfulness.
"Mommy, I awate!" This morning I cherised those words more than ever. March 1, 2012. It's not her birthday, it's not my birthday or anyone else's that I can think of right now. It's not a national holiday. It's the day, that 3 years ago we took our sweet, barely 6 lbs, 10 week old daughter to the hospital for the first time because she chouldn't keep anything down or in. The same day we began a journey that has taken us down many roads we still look back and think "WOW! Thank you Lord for getting us to the next turn. and the next, and the next."
I'll never forget calling my parents in the middle of the night to come get Koda. I'll never forget Craig telling me earlier in the night that he thought we should go to the ER and me hoping and praying that we didn't really need to but a little while later it was all too clear. I will also never forget when we got to the hospital, the looks on the faces of the nurses when they saw my Brynne. One of those nurses, I have known since childhood. I've told her a million times how thankful I am that she was there. God is amazing in placing the right people in the right place at the right time. Noone told us then, but a few months later one of our doctors told us how close we were to losing her that day. In our hearts, we knew.
Many of you already know of the 40 something times we've visited our vacation home (aka Covenant Children's Hospital) and the multiple surgeries, procedures, blood transfusions, etc. that have happened through the last 3 years and we are so very grateful for everyone of you that has traveled with us on this journey, especially those in prayer.
Since March 1, 2009, there have been multitudes of questions and as the title of this post suggests...we have a few answers. In the world of rare diseases and syndromes, Brynne is one of the "lucky" ones. She has a diagnosis. My heart aches everytime I read a facebook or blog post or hear of another child/family that is trying to find a diagnosis. Craig and I can attest to the feelings of inadequacy, guilt, and utter hopelessness as you grasp at every word a doctor says it MIGHT be this or it MIGHT be that or we'll run this test or that test and they keep coming back with "Well, it's not what we thought it was, but we'll keep trying." I can't tell you the peace we have just knowing what we are dealing with. Thank you Lord for giving us the name.
Yesterday was Rare Disease Day and we asked our friends and family to wear jeans (for genes) and zebra print (for rare & different) in support of Brynne and all those living with a rare or undiagnosed diseases. It is an understatement to say that we are overwhelmed at the response. We are so grateful for those who support us everyday. This little town of Post (& West Texas) has the biggest heart...not just for us but for anyone who calls this place HOME. Not everyone took pictures but we know of people of all ages and walks of life that wore their genes and zebra print (or Brynne's Smiles shirts) yesterday from Post Elementary to Snyder 4th Grade (& Borden County, Lubbock, Amarillo, etc), from game wardens to therapists, from family & friends to people that have never met Brynne.
"Thank you" doesn't seem like enough to say. Someone needs to come up with words that encompass the thankfulness we have in our hearts.
Yesterday also brought up something else...a lot of questions. So I thought I would answer the questions we get most often. We're always happy to answer any questions you have...that is, if we actually have the answer. Earlier this month, was Feeding Tube Awareness Week. Brynne and I went to Koda's Kindergarten class and did a presentation. They had some great questions and we loved answering them!
Ok...here are the questions and the answers we have.
1. What's the diagnosis? Trichohepatoenteric Syndrome or THES
2. What does that mean? Basically, her body doesn't know what to do with food. It also involves her liver, heart, and immune system.
3. Can she eat? Yes, she can eat whatever (well, except pineapple which we recently discovered she is allergic to) and however much she wants to, we just don't always know how many diapers we'll have after she eats :) Her favorites are "lello" chips (tortilla chips) and guacamole, ranch dip, strawberries, red bell peppers, and cheese. She's not really in to sweets but she's getting better.
4. How'd she get THES? She was born with it. It is literally in her genes. Gene TTC37 to be exact. Craig and I both have a mutation in this gene. Our mutations are different (which proves we aren't related) but we both gave the mutated copy to Brynne. I actually gave the mutated copy to Koda too but Craig's good gene overrrides it.
5. Were there any indications/complications during pregnancy? Nope, not a single one. But it wouldn't have mattered if we had known anyway...ALL children are a blessing from God.
6. Will she grow out of it? No.
7. How many other people have THES? According to a paper written in 2010, THES is estimated to affect 1 in every 500,000 live births. The study had only 12 participants. As far as we know, there aren't many more than those 12 and we're pretty sure Brynne is currently the only one in the US.
8. What is the prognosis? We believe it is just like anyone else with or without a disease, it is however long God decides.
9. Will her hair grow? Well, we sure hope so. The "crazy hair", as we call it, is consistent with THES and has become one of her trademarks!
10. Is she limited to where she can go/what she can do? We'd like to say no, but honestly because of her immune deficiency she does not go to daycare. We try to keep her away from those that have anything contagious. Also, because of her "tubes" & "buttons", she is limited sometimes on her ability to do things like get wet or run and play whenever she wants. We've arranged her feeding schedules to be at night while she is sleeping so the limits are as little as possible.
11. What are those tubes? Well, she has a port and a g-button. Both are used for feeding and medicine. The port is like a permanent IV and she gets TPN (her food) everyday for 14 hours but we can "unhook" the part that you can see so she can take a bath, etc. The g-button allows us to put things directly in her stomach like formula and especially those things that are hard for her to swallow like medicine.
12. Has she experienced any developmental delays? The only delay she has experienced is in her ability to swallow food which she is in therapy for and has made great progress over the last four months. She did walk, talk, etc a little later than when Koda did but all children are different.
13. What made you think something was wrong? When Brynne was four days old, she started vomiting. At first, we thought nothing of it but as it continued and the number of diapers we had to change increased, as well as the fact that she wouldn't gain weight were all indications that something was up.
14. What is her biggest struggle? To gain weight. (don't we wish we all had the problem :) ) With her body not wanting to absorb the nutrients like the rest of us do, she is dependent on TPN that goes directly in to her blood stream and provides nearly all of her nutritional needs.
Ok, if you've made it this far you deserve some sort of award! I hope this sheds a little light on our sweet Brynne Brynne and what she deals with everyday (and she does it with a SMILE on her face). If you have any other questions, please feel free to ask.
Again, I cannot express the deep gratitude we have for each one of you that has supported us along this journey. Our God has truly blessed us in so many ways and we praise Him daily for allowing us this amazing opportunity to share His faithfulness.
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