Wednesday, November 26, 2008

Where does thankfulness come from?

1 Chronicles 29:13:Now, our God, we give you thanks, and praise your glorious name.

I sat with my boys and we talked about some things that we are all so thankful for. The three of us listed some things, all very important, but every single one revolved around something we were given. As I read the verse above, I wanted to know the context of it (always read scripture in context!...I quoted it below so go ahead and read it yourself). David and the leaders of the tribes of Israel had just GIVEN to the Lord for the furthering of His ministry. Say what?!??! They were thanking God, not only because of what He had given to them, but because of their ability to GIVE! So, I am going to jump to an assumption - If they had not given, they would not have been thankful.

Sit and think about things you are thankful for. Why are you thankful for those things? Is it all because you were given something? What if you haven't been given much? Maybe you had things taken from can you be thankful for that? Thankfulness in these verses came from a heart of "willingly contributing." They were ecstatic to GIVE. I must admit....because of my son being "taken" from me, I am having a hard time being thankful for the hurt I feel. But giving to others by ministering through Jacob's life has made my soul dance with joy! The feeling of giving to others is is from the is a gift to give. I have never felt regret after contrary, the feeling that giving results in encourages me to do it more often. But after reading these verses, I realized that I relish the feelings giving brings but I do not turn to the Lord and praise Him for it....I just eat it up and keep it to myself....honestly, I have never uttered anything comparable to what David praised after he and his people gave. I need to do that...I want to do that.

Giving brings about thankfulness....if you do struggle to be thankful, give....give freely because everything comes from the Lord. Take your eyes off of you, give to others, and then praise God for his goodness, dance for joy and "praise His glorious name!"

Christmas is right around the corner, and we all get in the spirit to give then, but this giving 1 Chronicles is talking about is a lifestyle thing, a spiritual thing, a God thing.....not just a season. We should have a heart of thankfulness all the time which means we should be giving all the time. So many of you have given to us with time, talents, thoughts, prayers, finances, encouragement....I have thanked God for that, but have you thanked Him for doing that for us? Does it make your heart sing for joy that you have touched our lives? Be touched. Sing. Praise His name for the ability to contribute to the Fahmer's and then give again and again and again to more and more families as a result of your thankfulness to be able to give.

Tomorrow, when I sit with my boys, on our Nation's Thanksgiving day, I will be sure to rephrase my question. Instead of asking what we have that we are thankful for, I will ask what they have willingly contributed that brings about thankfulness in their heart. And then I pray we can pray the words of David.

Happy Thanksgiving!

1 Chronicles 29:1-18 King David then said to the whole assembly: "My son Solomon, whom alone God has chosen, is still young and immature; the work, however, is great, for this castle is not intended for man, but for the LORD God. For this reason I have stored up for the house of my God, as far as I was able, gold for what will be made of gold, silver for what will be made of silver, bronze for what will be made of bronze, iron for what will be made of iron, wood for what will be made of wood, onyx stones and settings for them, carnelian and mosaic stones, every other kind of precious stone, and great quantities of marble. But now, because of the delight I take in the house of my God, in addition to all that I stored up for the holy house, I give to the house of my God my personal fortune in gold and silver: three thousand talents of Ophir gold, and seven thousand talents of refined silver, for overlaying the walls of the rooms, for the various utensils to be made of gold and silver, and for every work that is to be done by artisans. Now, who else is willing to contribute generously this day to the LORD?" Then the heads of the families, the leaders of the tribes of Israel, the commanders of thousands and of hundreds, and the overseers of the king's affairs came forward willingly and contributed for the service of the house of God five thousand talents and ten thousand darics of gold, ten thousand talents of silver, eighteen thousand talents of bronze, and one hundred thousand talents of iron. Those who had precious stones gave them into the keeping of Jehiel the Gershonite for the treasury of the house of the LORD. The people rejoiced over these free-will offerings, which had been contributed to the LORD wholeheartedly. King David also rejoiced greatly. Then David blessed the LORD in the presence of the whole assembly, praying in these words: "Blessed may you be, O LORD, God of Israel our father, from eternity to eternity. Yours, O LORD, are grandeur and power, majesty, splendor, and glory. For all in heaven and on earth is yours; yours, O LORD, is the sovereignty; you are exalted as head over all. Riches and honor are from you, and you have dominion over all. In your hand are power and might; it is yours to give grandeur and strength to all. Therefore, our God, we give you thanks and we praise the majesty of your name. But who am I, and who are my people, that we should have the means to contribute so freely? For everything is from you, and we only give you what we have received from you. For we stand before you as aliens: we are only your guests, like all our fathers. Our life on earth is like a shadow that does not abide. O LORD our God, all this wealth that we have brought together to build you a house in honor of your holy name comes from you and is entirely yours. I know, O my God, that you put hearts to the test and that you take pleasure in uprightness. With a sincere heart I have willingly given all these things, and now with joy I have seen your people here present also giving to you generously. O LORD, God of our fathers Abraham, Isaac, and Israel, keep such thoughts in the hearts and minds of your people forever, and direct their hearts toward you."

Monday, November 24, 2008

Before the Blog Part II

January 14th, we got to the hospital early, like 6:00am. A few hours later,they got us into a room. They hooked me up to a bunch of machines and Jacob showed no signs of going anywhere other than a soft cervix. We had some issue with resident suggestions as to how to proceed...I have a couple medical doctors in my family and I think this gives me a boldness to ask questions so I took some questions to the attending (who was another one of my amazing doctors) who took things over. But Jacob on the other hand, was putting on a show....he was responding VERY adversely to even the low dose of the induction meds. Now, we were on a deadline to deliver this baby....nothing set in stone, but it would have been nice if Jacob was delivered prior to 6pm due to the Dr's involved. At this time it was 4 pm and things were not looking good for a vaginal delivery any time soon. We tried the drugs again but Jacob's heart kept decelerating at such low doses....he just would not be able to take the stress of delivery. They came in and told us they were getting the surgical room ready for a c-section and they would be back soon to get me to prep for surgery. I was terrified. Jason tried to cheer me up and I did ok....until they wheeled me away from Jason to take me in that room....I lost it....a c-section scared me so bad...the thoughts of people trudging around my wide open body on a table while I lie wide awake behind a gags me even now the thought of it all. They brought me in the surgical room. The lights were so bright. The clanging of the nurse tossing the instruments and metal pans. The needle penetrating my spine and sending shooting pains down the entire right side of my body. The counting of the medical instruments and rags as to not leave any behind inside of me. The nurse forcefully suggesting the anesthesiologist get her attending to stick me right. The drugs only taking effect on my left side. The waiting for the drugs to kick in on the right side. The poking with a pin that I could feel but should not have been feeling. The deciphering of pressure verses pain. I would not numb as quickly as they wanted me to. I could still feel it. Jason stayed close to me. The doctors on hold waiting for me to numb so that they could reach inside my womb and take my son from it. Finally, I was numb. They began. And although I could not feel the pain, I felt the tugging. I felt them inside of me. I sobbed the entire time. I am now. I was invaded. I didn't want it to be like this...I had to be ok so that I could be int the ICN with him and go to Rochester for his open heart surgery. I had to be ok. I hated every moment....every moment until I heard his cry. My son had been stripped from my womb and we cried together. I lay strapped to that bed, womb wide open on that table but the chaos melted away for that moment when I heard that cry. All I kept asking was "Is he blue?" He cried some more, Jason went over to meet him. Jacob was not blue. He breathed well. He did not circulate oxygen 100% but he did well. He was much much smaller than anticipated....he had been estimated to be just under 6 pounds while in the womb and he was actually 3 pounds 14 ounces. They wrapped him up and handed him to Jason. I met him. I kissed him. I already missed him! I kept thinking he was blue but they said he was ok. We had our pictures taken while they sewed me back together below that sheet. Jason and Jacob went down to the ICN while they took me to recovery. Jason stayed in the ICN for the next 4 hours and met his newest boy. I stayed in recovery that long. They didn't want me to be in a room on a floor that had babies on it....they were trying to get me onto a different floor so I hung out in recovery. Because we still did not know about the T18, things went as normal. I think back to this and I am shocked. There are so many who had just a few moments with their diagnosed T18 babies after birth and here I am in recovery drugged after surgery for 4 hours not being with my not-diagnosed T18 baby. The cardiologist and ICN fellow came in to tell me some news we just did not want to hear....Jason had already heard because he was there with Jacob while they were examining him. Jacob's heart was much more complicated than anticipated and they were not sure what they could do to fix it...the simplest surgery (as if any open heart surgery is simple) was out of the question and the second series of surgeries was more probable. I asked if the genetic testing was being done so he could have his surgery and it was ordered. I laid there and sobbed for my tiny baby boy who was broken and the anticipated surgeries that would have his tiny body opened on a table multiple times throughout his life to fix him. They took me to my room. I got out of bed and into a wheel chair to go and see my tiny baby boy. There he was in his open air bed. I looked him over. I melted. He was so sweet. He was so tiny. He was so strong. I looked at his feet and noticed they were a little different. I noticed he did not open his hands. I took note of it but it still did not alarm me. He was perfect. He was the sweetest baby I had every laid eyes on. I spent some time with him and then we both rested.

To be continued....

Saturday, November 22, 2008

Before the blog Part I

Jacob's due date was January 21st. October 3rd, I went for an ultrasound at the hospital because our tech at our regular office could not get a clear visual of all 4 chambers of our "baby girl's" heart. I went alone because it was just to get a quick picture of the heart and that was it. I sat on the table with that jell on my belly and stared with amazement at the screens in front of me....the life that I was seeing on the I asked her to make sure it was a girl...she looked at me funny and said....those don't belong to a girl! I was very excited about officially finding out the sex. Then she told me about the cysts that were on his brain...we sat and stared at his hand movements to look for any other signs of other "disorders" but he moved everything fine. She too could not get the right picture of his heart. There was a bigger issue here. I was asked to wait in the waiting room while she called up the doctor to take a look at her finding. Jason was at home with the boys (he was getting ready for work and then my Dad was there to stay with the boys until I could get home) and so I called him and told him that he didn't have to worry about any father-daughter wedding day dances (which he was!)....I would get yet another mother-son dance. He said, "WhAt?!?!" and was very excited about our little boy. But then I told him the sex was not the focus. I told him that there was a reason they couldn't get the right picture of his was because his heart wasn't 'right'. He asked if I was ok, I was, I told him I would get the details and we would talk when he got home from work. I was brought back in the room. The tech called the high risk ob in to look at his heart, my world crashed. He was unofficially diagnosed with complex congenital heart disease. Here I was alone finding out that my worst fear had come the time, an 'unhealthy' baby was my worst fear. The doctor spent some time with me. My trust in the Lord was very evident to him so when the option to terminate was brought up, it was phrased in such a way that he assumed my answer very respectfully and referred me to our baby boy's cardiologist. The tech and doctor left me in the room alone to set up the appointment and I wanted so badly to freak out....I could not believe I was living this (at the time) nightmare, I talked myself down, prayed, held it together and pushed forward totally relying on the Lord like never before. After the appointment, I got into me car, called my sister as I was driving...I realized this was a mistake as I totally broke down and sobbed for a moment but then had to get it together to drive. I did. I drove home just replaying in my mind all that had happened...when you are pregnant, you think about all the things that could happen but you never really thought they least I didn't....I was shocked that it was all real. I got home and my dad was there with the boys. He asked if everything was ok. I just shook my head and with tear filled eyes I said, "No." I didn't know what to do. I remember sitting on the couch wanting to call Jason at work because here my sister knew, my dad knew but Jason didn't. But I didn't want to tell him over the phone while at work and it wouldn't change anything. So I waited. Jason came home that evening and I told him the news. I don't' remember much else of that night but we told the boys of the doctors findings. They were concerned for their baby brother. Because it was news to us that the baby was a boy after being a girl for 6 weeks, Joshua said, "We need to give him a name......I like Jacob." So I said, "I like that name...Jacob it is." This day marked the biggest day of my walk with the Lord second to was a freeing day.....freeing of all was the Lord's will.

October 5th, Jason and I met with the cardiologist. We went over all the details of Jacob's heart defects. We went through the surgeries that would be in his future. We were "strongly advised" to get an amnio. Jacob became a cardiac patient and surgical candidate with some of the greatest care I have ever witnessed. He had more eyes on him and and more doctors involved...they were all great and they all respected our decision to give Jacob to best possible care we could regardless of genetics. But we were presented with a dilemma. Without the amnio, they would have to wait 5 days after birth to get genetic testing back in order to do the surgery....this meant he had to be strong enough to survive those 5 days until testing came back. An amnio could not be done too late in the pregnancy because the cell reproduction they needed to test accurately needed to be taken prior to a certain date....we had a deadline to decide if we wanted it or not....could he wait those 5 days? We had a month to think about it.

In that month, I met with my new ob (Oh, she was the sweetest doctor...I think of her often as her heart was torn for us after the diagnosis). She went down the list of chromosomal defects linked to Jacob's symptoms...there were quite a few and we talked about characteristics in each one....T18 & T13 were the worst possible outcomes but there were so many others and without the amnio; he was treated as a normal baby with complex congenital heart disease. She offered the amnio, respectfully accepted my decline and then we took a look at Jacob on ultrasound. His cysts had become smaller as anticipated and he looked great aside from his heart. Again, we sat and watched his hands move, we looked at his sweet button nose to see any facial defects were present and he was cleared until next month. At our next visit, his cysts were gone and things looked ok. We had met our deadline to request the amnio and we declined. Our decision was greatly respected among all parties this day, I would not change this decision.

My appointments continued on a monthly basis but then Jacob's growth became of concern....he was very small and his body was measuring significantly small compared to his head and legs. December 23rd came and we were told to go to our appointment with our bags packed in case of an emergency delivery. I was torn up about the thought of him being so small, so weak and so early. I thought of spending Christmas in the hospital away from my 2 older ones at home. He was cleared again as he grew as he needed and we cleared the holiday ok.

December 28th I woke up at 6:00 am with contractions 5 minutes apart. Because we lived 45 minutes from the hospital, our doctor said that any signs of labor, get to the hospital because this baby had to be delivered in a controlled atmosphere with the right doctors....(I delivered Jonathan in 2 hours so they took this into account and they needed more time than that to get everything in place for Jacob.) They checked me in, told me to walk because I was in no way dilated. We walked ALL DAY. I had more doctors check on was crazy. My contractions were 3 minutes apart, nothing too bad. At 6 pm, they monitored me and saw the consistent contractions but since there was no progressing, they were going to release me. They left me on the monitor as the nurse went to get the papers together to let me go home. She came back with the papers for me to walk out the door and looked at the monitor which had tracked Jacob's heart beat and on multiple occasions while she was gone those last 15 minutes, he had an irregular heart beat showing great concern of distress at times. That got the release papers in the trash and us admitted. Jacob was under 36 weeks and they didn't want to induce unless they had to. Through the night, contractions got worse (I had to breath through some of them), they had me on an iv to hydrate me and they monitored us every moment. It was a long night....Jacob had everyone on their toes. He had 2 more major decelerations and we were warned at 6 a.m. that if he had one more, they were going to do a c-section. Well he heard that and within the hour, all contractions stopped and he was fine. They monitored him for another 2 hours and everything was as it should be.....except I was EXHAUSTED from laboring for 24 hours, peeing every 2 hours and not sleeping AT ALL! But I was still pregnant which was great.

The week of January 7th, I met with my ob and Jacob's cardiologist one last time before delivery and scheduled an induction (to keep things under control) January 14th and to schedule Jacob's open heart surgery for following week just in case he needed his surgery that soon. Jacob's conditions did not make him a candidate for a c-section....we could still go naturally as his complications were issues that would only effect him once he was breathing outside the womb. We were prepared for a few symptoms such as low circulation causing him to be blue....just things we needed to not be surprised by. We were all on the same page.

To be continued....

Friday, November 21, 2008

Before the Blog

I don't know why, but I think a lot about how we "met" you all after Jacob's birth and diagnosis. "Jacob" started his blog the day he was born and wrote what he observed. While I was in Atlanta at Deeper Still, I remember talking about the blog and one mom commented how there was this mystery behind our was written from an infants perspective which is different, it was written by either Jason or myself which some enjoyed trying to figure out who, there were events not told about because Jacob was not there or was not born to blog about it. So, for some reason (maybe a mother searching for some details about other T18 journeys, or someone who's baby was given an unfavorable diagnosis after birth, or maybe just to give some more clarity to our story, or just to help me grieve some of my darkest days) I feel like blogging about some events that took place that "Jacob" did not blog about. This will not be short so you may have to take this in shifts...I will be writing in parts.

Friday, November 7, 2008

An email from a Jacob Fan

Here's an email we received from one of Jacob's fans in California. It's good to see his legacy lives on in all of you as well as in us!

"Hello Karen and Jason! I believe this is the first time I have actually sent an e-mail to you. I could not let today go without saying a HUGE thank you. Today is my birthday, and when I woke up this morning, I thought to myself, 'how have I changed this year?' I answered that question to myself and the answer surrounded what little Jacob has done for me. He has made me a better mommy, he has made me notice the sky is a bit bluer, the grass is a bit greener, the San Francisco Bay outside our home is more beautiful. I am not sure what distinguishes Jacob (and your entire family) from others in blogland, I just know all of you have made my life different.
Thank you for a birthday present that you never knew you gave. I have had Jacob's "Fan" picture on my blog since you posted it months and months ago. I look at him every day and realize how wonderful the world really is.
Thank you again!"

Wednesday, November 5, 2008

Leroy Lessons

A loss may help others find things. Our loss has helped others all over the world find things like Jesus, God, a Creator, time to give an extra hug or kiss, time to just be a family, time to talk longer with a friend, time to take a picture or video, time to just stare into another human's eyes and just be thankful for another breath. With Jacob, I was in the midst of it all, finding so much for myself and for my family. But today we had a different experience on a much much smaller scale that gave me an opportunity to observe true lasting character from my boys without the huge emotional attachment to the situation.

Today began as the average day. I got up, got the boys breakfast as Jason slept a bit longer and I headed downstairs to begin our school day. Jason got up and headed outside whistling...that is odd. Jonathan came and informed me and Joshua that there was a dog! It was a beautiful young boxer. He was very friendly, obedient, sweet and well taken care of. To be cautious, the boys stayed at the door inside while Jason and I played with him a bit to feel him out and be as sure as we could that he was an ok dog for the boys to be around....he was so nice and sweet and very gentile with the boys. Knowing this dog just got himself into some trouble, we took appropriate measures to find his owners...we called the SPCA to see if anyone reported a missing dog, we called the town dog warden, we listened for neighbors who may be calling for him, we took him for a walk around the neighborhood to see if anyone recognized him. Nothing. So, the question came up...."Can we keep him?" I made sure the boys understood that he was not our dog....he belonged to another family and I asked them to think about how they would feel if they lost something and what they would want someone to do if they found it. They immediately took it all to heart. Joshua thought up making "Dog Found" signs to hang up around the neighborhood....I got on the computer to make them up, Joshua grabbed them from the printer, grabbed the tape from the drawer, climbed in the car and chose the stop signs to hang them on. He cared for the dog, as did Jonathan, by playing ball, laying in the grass with him, petting him, changing his water about 40 times, tying to get him to eat, giving him a treat, and sympathizing with him when he whined if we left him alone.....the boys named him just about everything in the book....Rusty, Boy, Max, Watch, Smiley, ....the list goes on.

Although there was a family who was panicked by their loss, their loss helped us find something.....more amazing qualities in our boys. Caution: blunt, seemingly insensitive statement to follow.....The very night Jacob died, as I was putting Joshua to bed he asked, "Can we get a dog now?" Please know that he in no way was replacing his love for his baby brother with a dog.....understand that this question came up well before Jacob was here and while Jacob was with us. But sympathizing with Jacob's time and care here, Joshua realized we had a lot going on and knew we just couldn't do it. But his heart still wanted a dog so he asked that night when to him it seemed as if life just got less hectic about tugging on heart strings! (smart boy!) But, we turned him down again (heartless, I know). So today, when that dog was in the yard Joshua told Jason that this was a dream come true...that it was a great day to have a dog......he appreciated what he had that moment knowing that it may be gone the next. We waited until about 4:30pm and then we decided to take the dog (named "Watch" at the time) on a walk to see if anyone recognized him yet. We walked to the stop sign (the boys laughed every time Watch lifted his leg to pee on some one's mailbox!) with no success. But on our way back a vehicle slowly approached us. The driver rolled down her window and said, "Is that Leroy?!??!?" Watch went nuts. His owners. My boys faces. He lived just a few houses down from us. The lady thanked us for caring for him, let us know they were so worried about him, and she asked some questions about our day. She had been worried all day about having to tell her little boy that his dog was missing. We introduced ourselves. Then out of the car came her little boy who was the same age as Jonathan. She introduced him. His name is Jacob. My boys were so honored to bring Leroy back to this 4 year old boy who shared the same name as their sweet baby brother. They got to bring another Jacob some joy.

When that vehicle approached me, I knew it was his owners. My heart sunk for my boys. But they just rejoiced....I couldn't believe it. Joshua's dream of a dog, so real, so tangible, but too short. Just like so many of our family, friends and fans can't understand how we can rejoice in our journey with Jacob. Today, in Joshua and Jonathan's hearts, they knew Leroy was not theirs to keep...although he was a dream come true, they knew he wasn't our's. They knew they were on borrowed time and they enjoyed every minute they had with him until they had to give him back to his owner. They understand and learned more about what happened with Jacob than I realize. Nine months ago, in Joshua and Jonathan's hearts, they knew Jacob was not theirs to keep. They knew they were on borrowed time and they enjoyed every minute they had with him until they had to give him back to his Maker. It has made them the boys they are today, appreciating every moment of joy they are given. I am a proud mama. Thank you Leroy for going for a neighborhood walk into our yard and spending the day with us. Thank you Jacob Ryan for being used to build true lasting character in your big brothers.

Saturday, November 1, 2008

Jacob's Always With Us

We've made it a point to make sure to include Jacob in all our family things lately... actually it just comes naturally... the boys will never let us forget to include him! So here's some shots of how Jacob got involved in Grampa's birthday party at our house a couple of weeks ago and how he was remembered at Halloween. Each of the boys had a pumpkin to carve. Jacob's has his initials on it "JrF" - and he's represented by his bear and Jonathan wanted his little ducky to come in the picture too!

The boys had a great time carving their pumpkins and being reminded that this is what Jesus does to us. He reaches into us and pulls out the goopy nasty junk and replaces it with a light to shine in the darkness.

Jonathan was Spiderman, of course (again!), and Joshua was a skeleton because one of his favorite LEGO guys in all the world is the skeleton. That skeleton is also a reminder of a story Jesus told. You see, a friend in Delaware gave Joshua a tub of approximately 3,000,000,000,000,000 LEGO's (I may be understating that number) but there is only 1 skeleton who is made up of 5 parts which fall apart pretty easily. And just like the 1 sheep who goes astray, if one piece of "my skeleton" goes missing Joshua will leave the 3,000,000,000,000,000 and find the one. Even if it means sifting through all 3,000,000,000,000,000 to find that one leg to put that skeleton back together again!