Monday, February 28, 2011

Jethro's 1st Birthday!

Wow, I have spent the last couple days in tears at various times. Tears of joy and thankfulness to my Father God for His wonderful faithfulness to us. I can't believe a year has gone by already.

We have a baby who is happy, adorable, content, adorable, engaging, adorable, playful, funny, and did I mention adorable? ;-) We have a beautiful house that is almost done, and we have been blessed with wonderful folks who were there when we needed them.

Yesterday, we had an open house to celebrate and at one point had over 80 people in our home! And, you could still move around. I think it's going to work well for family gatherings and hospitality. :-)

Here's a few pictures from the big day.

2d year MWSB students. They were here last year when Jethro was born. Although they didn't get to see him, they held a prayer vigil for him, and ministered to our family in a tremendous way. We were so thankful that they were able to celebrate this milestone with us.

The oldest and the youngest. A couple of handsome young men, I think. :-)

Just a little of the crowd of party goers.

Singing Happy Birthday. That would be a pepperochini in the baby's hand. He thought they were the bomb.

Me thinks the baby likes chocolate birthday cake! That would be a very Happy Birthday Boy!
Thank you, Lord for a wonderful year with this precious child! We give You praise for all that You have done!

Friday, February 25, 2011

Progress on the house

I haven't posted any updates on the house here lately. I update Facebook pretty regularly, but it takes more time to do it here, so I just haven't.

We were hoping to move today ~ things aren't quite done, but I want to be at least mostly moved in for Jethro's birthday party which is Sunday. AAACCCKKK!!!!! Yesterday they were supposed to lay carpet. We didn't have everything we needed at the house (which they didn't tell us we needed), so the carpet layer threw a fit and left. :-P Can I just say I have been totally un-impressed by our carpet buying experience and would STRONGLY DISCOURAGE anyone from buying flooring from GREAT FLOORS. They sold us product they did not have, they piddled around for a week and a half before reluctantly telling us they could get ahold of the manufacturer to see if they could get more of it, they didn't make sure that we knew what all we needed to have done at the house so that the carpet could be laid. Yesterday, when I called and laid into the salesman about how this whole transaction has gone, I was basically told it was our fault it hadn't been laid yet ~ excuse me??? I am not the one who didn't tell me you could order more of my carpet! So, now we are about a month behind on getting the carpet laid. Not happy. And they wait until you are about ready to pay to tell you how much you are "saving" when they charge you more. :-P Anyway, unless you like it when you pay for product and then the store you are dealing with gives you nothing but a run-around, I suggest you stay away from Great Floors. It has been nothing but an exercise in frustration.

Today the carpet is finally getting laid, and I am hoping to at least get a start on moving furniture.

Here are some pictures of the progress we have made.
Kitchen, breakfast bar, and in the left background the school room lights.

Light in the living room.

Light in the master bedroom...bought for $20 on clearance!

West wall of the kitchen. Hickory cabinets, tile countertop, glass mosaic backsplash.

South end of the kitchen. The 'L' that the counters make is open to the rest of the house.

Chandelier in the greatroom. Cedar on the ceiling.

Laying the laminate. The girls were lots of least *they* thought they were!

Will sweeping up after the laminate was laid. He claims he can out-sweep any woman. ;-)

Once we're down at the farm, we may be without internet for a few days. I forgot to call to let them know we would be moving. As soon as we have it back up and running, I will post pictures from Jethro's birthday bash!

Thursday, February 17, 2011

Awareness day 16 ~ What can you do?

When I was visiting off air with Mr. Fabry the other day, one of the things he wanted to talk about was 'What can the folks in the pew do?' God had other plans for the program though, and we never got that far.
It's something I had already been giving some thought to, so I thought that I would address it here as part of CHD Awareness month. It is difficult to know how to help someone when they are going through trauma. I know in the past, I have felt at a loss as to how to help. We have also told folks to give us a call if they needed anything ~ and we meant it. However, to expect someone who is dealing with traumatic issues to be the one to reach out...often we don't even *know* what we need. This post is written on the premise that you should not expect much of anything from the family in crisis. They are *in crisis*, so they just need to be ministered to.

So, here are some suggestions. These certainly apply to families dealing with heart defects, but would also apply to families dealing with cancer, death, downs syndrome, or any other defect or illness requiring hospital stays (or not, but I am including some hospital specific ideas).

  • Be there. Call, email, send a card, physically show up. Your presence means more than you can imagine. When Jethro was just days old, two of my friends showed up at the NICU with a basket full of china, tea and goodies. What a refreshing time that was. It meant a great deal. Days spent in the hospital get LOOOONNNGGG. You might want to call ahead, just to make sure they aren't taking a needed break from the hospital, or at least the room, but I was always so glad to see a visitor! I wish there would have been more. Even if you can only stay a few minutes, don't underestimate the value of your visit. This doesn't just apply to when someone is in the hospital. A chronic or catastrophic illness by nature creates a feeling of isolation. Your existence is travel, Dr. appts, and home. Maybe, if it's cancer, they can't have company, but you can still have contact and let them know that you are thinking of them. Don't assume they know. Don't expect someone who is dealing with hospitalizations, surgeries, learning new routines, dispensing meds, traveling back and forth to Dr. appts, on top of whatever they had going on before to make the call. They are likely thinking of you, they would probably have time to talk, but to expect them to initiate contact when their world has been a little impractical ~ they're just trying to make it through the day remembering everything they *have* to do.
  • On the day of a surgery, if you cannot physically be there; again, call, send an email, or if you're both on FaceBook, send a FB message letting them know that you're thinking of them and praying for them. If you have never turned your infant or child over to a surgeon for major surgery, I can't even explain to you what it's like. It's definitely an, "I HAVE to trust God" moment. With Open Heart Surgery, you know that they are going to be stopping your child's heart, putting them on bypass, etc. To have support on that day is invaluable. But don't expect them to ask you to be there. I know folks are busy, I know they have their own lives to live. I'm not going to impose on them by asking ~ I was sure thankful for my dear friend who came and sat with me the day of Jethro's Glenn. She asked me ahead of time if I would like her to be there, giving me the freedom to say "yes!", and know that it wasn't an imposition.
  • Provide meals. This may seem like a no brainer, however, they may be needed later than you would think. Jethro was in the hospital for 5 1/2 weeks. Our wonderful church family provided meals for my Mom (who had the rest of our children), so she didn't have to cook for so many extra mouths. They offered when we got home, but I had been away from my family for well over a month. I just wanted some semblance of cook and do laundry, etc. A couple weeks down the road, when I was overwhelmed with the new "routine", and multiple trips to town (an hour away) every week, meals would have been greatly welcomed! By that point, no one was offering, and I just didn't ask; we just struggled along. This is also VERY applicable when there is a death in the family ~ especially if that death is a child (no matter how old). Folks are great about providing meals right to start with and that is wonderful. But, if you have lost a child, you might really appreciate a meal months down the road when the rest of the world has continued moving forward, and you are still drowning in grief.
  • When someone is in the hospital, if you can afford to give them even a small monetary gift, it is so appreciated. Our hospital is great about providing meal tickets for parents of children in the NICU or PICU, however, not all families are provided those, and they do have a daily limit. And honestly, if you are spending an extended amount of time in the hospital, you are going to want to get food from somewhere else. :-P Hospital food gets old, FAST. Even if they can do the meals on meal tickets, the little extras, like vending machines or coffee add up quickly.
  • Along that line, taking them a fruit basket so that they have healthy munchies, or giving them a coffee wonderful and appreciated. Our hospital has a local coffee company that has set up a couple or three different coffee bars within the hospital compound. I loved getting Thomas Hammer gift cards! If they are not in the hospital, but making a lot of trips to the Dr., you might give them a gift card for gas...I don't even want to think about how much we've spent on gas over the past year! Having someone in the family with an illness can add so many unexpected expenses, it's hard to even list them all.
  • If they have other children at home, then bringing the children up to the hospital is great. Don't spend a lot of time telling mom and dad how much the other kids need them. They know that. All you are doing is creating unnecessary guilt ~ adding to the guilt they are already feeling for not being at home. Even a sedated newborn NEEDS their Mama and Daddy there. They need someone to advocate for them, and to keep track of what is being done. As much as we don't like to think about it or consider it, mistakes happen...and often, it's Mom or Dad's sharp eye that catches it before it's too late. They need to be with their infant. If you have never had a child in the hospital, it's hard to understand. I knew my other children needed me, but I also knew that they were surrounded by family and friends that loved them and were caring well for them. Jethro needed me to be there watching over him. Giving support to the parents, and reinforcing to the kids that they are only away because they have to be, not because they want to be, that is a gift. We were overjoyed when someone would bring the other children up to visit, and wished it could have happened more often ~ but once again, not something I felt comfortable asking for because folks were already doing so much to help.
  • Not everyone has this ability, but some folks can just observe another's life and know what needs to be done. This can be a blessing for a family in crisis. As I mentioned earlier, it can be hard to know what is needed. But showing up unexpectedly with a meal, or offering to drive to a Dr appt., or a myriad of other things, without being asked. These are truly gifts to the family.

Families going through trauma need a lot of support. They may not be able to reciprocate much, if at all. Depending on what is going on, they may have all they can do just to stay afloat mentally, emotionally and even physically. That doesn't mean that down the road things aren't going to be more stable and the relationship will get back to 'normal'. Honestly, if folks didn't make the effort to at least stay in contact with me during the worst of our last year, by the time things settled down and I could catch my breath and think about something besides Jethro and the rest of the family's needs, I figured that they were gone. And I have so much on my plate, I am not pursuing relationships with people who aren't interested. It's fine. We move on. God is sovereign, He knows what is best and I trust that.

I know that I have asked you to step up and take the initiative. To be giving and self-sacrificing, but isn't that what God asks us to do? Aren't we to step in beside those who are hurting and do what we can to ease their burden? I know that I have failed to do that in the past ~ mostly because I just didn't know how to help. I just didn't understand. I am not fussing about how things were done for us ~ we were very blessed! God has provided us with an outstanding, loving church family and I am extremely thankful for them and all the support they have given us. They have truly been the hands and feet of Jesus to us this past year. I did want to share from a Mama's perspective, what is helpful...and a little of what is not. Ultimately, *ask*. But don't ask in a general, what do you need, sort of way. Ask specific questions. "Do you want the kids brought up?" "Do you need x, y, or z?" When your brain is overwhelmed with tons of information and emotions are running high, and you are exhausted, you can't necessarily answer a general question, but specifics can be easier.

May the Lord bless you as you seek to come alongside those in your life who are hurting and needy.

Friday, February 11, 2011

Disappearing Friends

It's awareness day 11, and while this is not a CHD statistic, it is a CHD reality. This was one of the things I wish I had known going into this journey...although I'm not sure I would have believed it of any of our friends. Once you have a child with a catastrophic or chronic illness, you will have friends who just disappear from your life. It will likely be the ones you would have least suspected it of.

I share this because if you are dealing with this right now, I don't want you to think it's you. It's not. It's them. I have talked with folks dealing with CHDs, folks who have lost children, folks who are dealing with cancer or other big health issues and across the board, they tell me that people have just dropped out of their lives.

It can hurt, it can make you wonder if you did something, it can make you wonder at your discernment in choosing friends. But, as I have struggled through this, God has shown me that I need to recognize His sovereignty over my friendships, just as I do in the rest of my life. If the friendships would have been beneficial during this season, they would still be here, but they are not. I have to believe that God removed those relationships for our good. Because everything He does is for His glory and our good.

I have been very blessed in that God has provided me with a huge network of heart moms. Mostly online, but some I have had the joy of getting to know in real life. They know and understand the things I am going through, and that is invaluable. Some of the people in our lives that were more on the fringes, have become better friends through our struggle, and that has been a blessing as well.

If you are dealing with disappearing friends, I would encourage you to look to the Lord. He has a purpose in them leaving your life. Embrace those who would share your journey. And, whatever you might be dealing with, CHDs, cancer, downs syndrome, whatever, I would also encourage you to make connections online. If you are in an urban setting, likely there are some sort of support locally, but for those of us who live in rural areas, the internet can be a huge blessing when it comes to support and education in our journeys. It's difficult, it hurts...I am not denying that. But, grieve the loss and move forward. Do you want detrimental people in your life? I don't. I am thankful that I can trust God's sovereignty and wisdom in my relationships as well as every other area of my life.

Thursday, February 10, 2011

CHD Awareness Day 10

Jethro wants you to know...

Approximately every 10 minutes in the world there is a baby like me (With Congenital heart defects) born into the same hard fight as me. It begins with blood tests and sticky wires, being intubated & sometimes sedated from moving, talks of heart catheters & open or closed heart surgeries, IV lines, picc lines, central ...lines and many medicines & machines just to keep us alive. PLEASE PLEASE Raise Awareness!! ♥♥♥

Wednesday, February 9, 2011

Psalm 139: 13-16

"For You formed my inward parts; you knitted me together in my mother's womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well. My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them." Psalm 139: 13-16

The question was asked today, "How do you reconcile that Scripture?" (In relation to CHDs) And here is my answer. :-)

Scripture is truth. It is God's word breathed out and written down for us. So, the reality of Jethro's heart does not change the truth of this Scripture. In fact, I believe that it magnifies the truth of this Scripture. God knit together Jethro's heart just as carefully as yours or mine. In that sense, while Jethro's heart has a defect, it is *not* defective, it is knit together just as God intended it to be. God has a plan and a purpose for Jethro and his heart, and that purpose could not be realized had his heart been healthy.

I stand more in awe of the wonderful creation of the human body now, after living with Jethro than I ever did before. What an amazing, breath-taking thing the human body is. What a beautiful balance of everything. So fragile and yet so resilient at the same time. Jethro's lungs were severely undeveloped because of the enlargement of his heart. But, once the size of his heart was reduced, his lungs grew! How amazing is that?

I see Jethro's heart as a physical picture of our spiritual hearts. Broken, incompatible with life, he was headed for death, until the Drs and surgeons stepped in and intervened. They "fixed" his heart so that it could be life-sustaining. We are born with spiritual hearts that are broken and incompatible with life ~ headed for eternal death. Until the Great Physician steps in and touches our heart and makes it life-giving ~ for eternity.

The journey of a CHD family is not easy. There are many hard moments, uncertainties, things that are just flat out unfair. Sometimes there is death. But I thank God for Jethro and his heart. I wouldn't have missed this for the world.

Tuesday, February 8, 2011

An Opportunity to Share Jethro's Story

Wow. Last month I had emailed some different radio programs to ask them to consider doing a program on CHD awareness this week. But, I never heard anything back from any of them. Well, this morning, I had an email from the producer of Chris Fabry Live on Moody Radio.

Tomorrow, God is giving me the opportunity to share Jethro's story and to help raise CHD awareness on national radio. I can't hardly believe it.

I would surely appreciate prayer for tomorrow! I want to be able to clearly share Jethro's story and how greatly God has blessed us through this journey.

Here is a link to Chris Fabry Live I hope that works tomorrow! :-O I believe you can listen live online or later as a podcast, if you are interested.

Awareness Day 8

As a follow up to yesterday's post, here is an article with some important questions to ask at your 20 week ultrasound. Please, print it out and take it along with you ~ it could save your baby's life.

Monday, February 7, 2011

CHD Awareness Week Begins

Today through the 14th is CHD Awareness week. If you are pregnant, I would suggest a couple of things. Sometime around 20 weeks or after, get a good, diagnostic ultrasound done. Ask specific questions about the heart. Don't just settle for knowing if you're having a boy or girl. Many CHDs can be caught at this point. Be aware that the perinatalogist will probably suggest further testing to see if you want to murder your baby. Whether or not you go for more testing, please let me encourage you to give your baby the gift of life. No matter how bleak things look. They held out almost no hope for Jethro ~ and we are about to celebrate his first birthday. But life, no matter how long it is has value. Yes, a CHD or something else may take your child's life. Just don't let it be at your hands. Enjoy that baby, no matter how long you are blessed with them.

The other thing I strongly encourage you to do is make sure that a pulse oximeter test is done on your newborn. This is a very simple, non-invasive test that measures your baby's oxygen levels. They should get a reading from the hand and foot. This alone will catch many undetected CHDs. Still, not all hospitals are doing them routinely ~ make sure your hospital/midwife does a pulse ox on your newborn! You are your baby's advocate, so advocate. :-)

Today's CHD fact:
Congenital Heart Defects DO NOT have a cure. Children born with a CHD undergo OPEN HEART surgery, usually multiple surgeries to "mend" the problem. But this is only pallative, never "fixed" CHD'ers have a lifetime full of medications, heart catheterizations, and numerous procedures. 1 in 100 births! Donate to CHD research and help us get one step closer to a CURE.

Picture by Jessica Goffard ~ thanks, Jess!

Saturday, February 5, 2011

Did you know???

Every 15 minutes a child is born with a CHD. That means every 15 minutes a child must begin to fight to survive. That means every 15 minutes a new family must begin to rely on doctors, nurses and modern medicine to keep their child alive. That means every 15 minutes people’s lives are changed forever. February is Congenital Heart Defect Awareness Month. Help spread awareness for all the CHD warriors and angels. ♥

Tuesday, February 1, 2011


Banner designed by Becki Mobley

February has long been associated with hearts. Valentines Day, sweethearts, romance. For our family, now it is associated with broken hearts. Our sweet Jethro is a February baby, so we are going to have the joy of celebrating his first birthday this month, but it is also CHD awareness month. With the week of the 7-14 officially CHD awareness week. I am going to try to stay top of things this month and post facts about CHDs throughout.

Congenital heart defects are among the most common birth defects, affecting nearly 1 out of 100 babies in the United States. Some heart defects are mild, while others can be life-threatening. Other common birth defects include cleft lip/palate, Down syndrome and spina bifida (open spine), affecting about 1 in 700, 1 in 800 and 1 in 2,500 babies respectively.

I encourage you to stop and read the previous paragraph once again. There is a difference of 600 babies between CHDs and the next most common birth defect. Yet how many of us have heard, or are familiar with Down syndrome, or cleft lip/palate or even spina bifida. How many of us are ignorant of CHDs? And yet, the possibility of knowing or having a child with CHD is much more likely.