Confusing Thoughts…

I have always been told that when you are faced with a problem, keep your chin up and hold a positive attitude. This is the approach I have taken with our situation. I can’t say it has been easy; however, it is what keeps me going. The last couple of weeks have challenged my approach and I can certainly say that it has made me ask God over and over again…why?

I don’t believe in luck. I believe good things happen because of the actions we take along the way. With that said, I feel like a hypocrit because I am starting to believe in bad luck. If I choose the right angles on certain things in life, good things will eventually happen.  Why then do bad things happen? If we make conscious decisions in life to be good, do the right thing, and love others, how is it that the outcome can be negative? There are some things that happen in life that simply seem unfair. They may come all at once, or may be spread over our lifetime. God has never challenged me with something like this before.  For me, this challenge has become very real.

I know that life is not fair, and the last thing I am saying is that only good things should happen to good people.  In life we can make decisions that will ultimately have consequences. But what if a decision or action was never made and the outcome still had a negative effect on us? For instance, last week my car was “keyed” from front to back in our office parking lot. This clearly was not the outcome of a decision that I made in the past. It was a random event that happened, and I simply was on the receiving end. God has provided us all with the gift of “free-will”. This gift can be good or bad, it depends on how we use it. The individual who chose to key my car was using his/her own free-will to express their own frustration in life on me and my car. Now, the hardest question of them all…whose, if anyone's, free-will determined the fate of our son? I have always been told that Jesus has a special love for children. I don’t doubt that, but how could this special love prevent our son from living a normal life?

Lindsey and I are doing our best to keep our chin up during this hard time. Lindsey has been a true blessing in my life in that she has so much wisdom around staying positive. Her attitude is contagious, and I can’t help but stay happy when I am around her. The reality is she can only stay positive for so long. There is going to be a day coming shortly, where her positive attitude will fade. The day we lose Brody will be the start to a long journey together. Lindsey has an incredible emotional attachment to Brody. Her view is that she has been blessed to carry him for the last 7 months. My emotional attachment is only the result of talking about him, singing to him with Lindsey at night, and reading about his condition. As I think about Lindsey’s amazing attitude, I realize the possibility of how it may end. With that, I have made a conscious decision to slowly remove my emotional attachment. This is something I quite possibly will regret, however I don’t know how I could do it any differently. When Brody joins God in Heaven, one of us needs to be there to hold our family together. We all have highs and lows, my fear is Lindsey’s current high, will become very, very low once he passes away. If we are both in that state of mind, how do we move on? It is weird to think about planning your emotional mindset when it comes to losing a child. I love our son with all my heart. I also love my wife and daughter more than anything in this world. I realize that I may have regret around this decision,  but the regret of not being strong when your wife is broken is much worse.

Message to Brody:

I love you so much. I am so proud of your incredible growth in the last month. Your Mom and I were so excited to see you at last week’s ultrasound. You look so much like Addy when we saw her ultrasound pictures. I pray to God that you are safe, comfortable, and happy while you grow within your Mom. I am so excited for the day that I can hold you and tell you how much I love you.

Love, Dad

27 Weeks

Here is our handsome dude!  Brody is weighing in just shy of 2 lbs, putting him at the 30% compared to other babies at this gestational age.  He would not show his entire face for the camera this morning, but instead was all snuggled up into the placenta (the left side of the image).  His head is down, which does not mean a whole lot considering the amount that I feel this kid move, but nonetheless it was good news to us:)

Jason and I have decided that good news is very relative to the situation that one is in.  For instance, today it was good news that Brody's heart condition had not worsened, but rather is stable and showing no risk of failure prior to birth.  His limb lengths and facial features look normal, and possibly a bit like the ultrasound pictures of Addison that were taken around 27 weeks.  Also, the various parts of his brain look normal with the exception of some slight splaying of the cerebellum.  These are all things that we took totally for granted when we were expecting our daughter.  What a miracle it is that all of these tiny, fragile, specific, and unique features can develop so perfectly as they so often do.  With Brody, every last feature that develops appropriately is good news.  If we are blessed to have future children, this will certainly be our feeling as well.

Jason and I wish that our doctors could see into the future.  As much as we want to leave this all up to God, and know that He has it totally under control, it would still be nice if I could input some important dates onto my summer calendar, like Brody's birthday.  At least that one.  Unfortunately they were unable to do that for us today.  Our doctor said that at this point there is no reason to believe that Brody would be coming early.  Some families expecting Trisomy babies choose to induce labor early because of the baby's worsening condition or their body simply goes into preterm labor because the mom's body senses the the condition changing.  They do not think this will be the case for us, but rather explained that many babies with Trisomy go to full term like other healthy babies.  As far as I am concerned, the longer that Brody stays in there, the longer he will be with us.  We pray that he cooperates:)

The specialty clinic that we have been going to has scheduled us to tour the NICU at the University of Minnesota in a couple weeks.  During this visit we will be able to see where Brody will be born, meet the head neonatologist that will be in charge of his care, and go over our birth plan with a social worker.  I have decided that carrying a baby with Trisomy 13 might be like carrying a baby that is expected to be famous, possibly the next Justin Bieber or Oprah;)  The doctors, nurses, genetic counselors, sonographers, photographers, whatever, are treating Brody as if he will be at least as important, if not more important, than any other baby they have cared for.  As we sat in a room with many of them today, I could not help but ask them why they are so interested in caring perfectly for a baby who, no matter what, is not going to live for very long.  Our sweet doctor simply said, "every life is important, no matter how long."  Our genetic counselor then offered us a card and a CD for Brody (Addison never was given a CD before she was born).  Her card read, "never doubt how big and important the impact of his life is, no matter how short."  I walked out of the clinic today feeling so proud of this little guy, and thankful for everything about him.

Addison was also in the mood to talk about Brody today.  We were playing with chalk, and she asked me to write Brody's name next to hers.  She is very fond of the new necklace I have been wearing (from a very important family in my life) because next to her name, is Brody's name.  She has enjoyed showing it off to other people, saying "Addy and Brody."  I told her that my tummy hurt today.  She said, "Mommy, Brody's in there."  (However, she still thinks she has a baby in her tummy too!)

Thank you for reading about Brody!!!  Sharing ANYTHING about him now is tremendously comforting and even powerful for us.  He continues to have a significant impact on us, and I pray that even in the smallest way, he has an impact on you too.

Love,
Lindsey

I thought I would share another video that I have watched several times since we learned about Brody's condition.  I was connected to this mom through a cousin (thank you!), and have been corresponding with her ever since.  She has been incredibly helpful in answering questions, reaffirming our decision to carry Brody, and confirming all the blessings that they too received through their sweet Jonathan.  (You can click on the video name to watch larger version. It is not the easiest you tube video I have ever watched).

Joy

The first question that people have been asking me lately is, "how ARE you?".  I have been thinking a lot about my answer as I do not want to ramble on about exactly how I am doing, because at times it would take all day.  It seems that there are many points during the day that I find myself off in another world thinking about all the different scenarios and how all of them are less than ideal at best; wishing that this would all go away.  I find myself talking with friends, playing with Addison, or out on a run when I get this heavy feeling in my throat as I stop myself from crying (does anyone else get that?).  But through these sad moments, where happiness seems nowhere near, I have realized that something else has stayed very constant.

It has become very clear how different joy is from happiness.  I have always spoken of this, and maybe at times experienced this, but it has never been more obvious to me than now.  I think I would describe myself as a generally happy person, but I can think of many times in my life where the happiness has been sucked away for periods of time, both brief and more significant.  I would not say that I am happy right now, as Brody's prognosis is not one that I am excited about or positively anticipating.  I would be happy if we were expecting our second child in August, and we were doing all the "happy" things that go along with preparing for that, like organizing the nursery, buying cute boy clothes, making plans for a family of four, and thinking about all the fun things we will do together in the fall.  But, God does not promise us those things.  He has shown me that providing me with the feeling of being "delighted, pleased, or glad, over a particular thing" is not His priority.

On the other hand, I have never experienced JOY like this before.  I feel slightly uncomfortable even writing this, as anticipating the death of our son whom we already love deeply should not be in the same sentence as joy.  But, God has proven to me that joy from Him does not come and go.  His promises regarding joy are more relevant to me now than ever, and I am so thankful for them.  How can I refuse to feel joy when I know that I have a son with a very special purpose that I will someday be with forever and ever?  How can I feel anything less than joy when I feel Brody's uniquely created body wiggling around inside of me?  And how can I resist this joy when I know that I have been given a very important job, to be Brody's mom?

I think God is perfectly comfortable allowing me to go through this season without a whole lot of happy days.  I know that this life will be full of disappointment and that it will hurt.  I also know, for sure, that there is joy to be found in these times, and it is this joy that will stay with us in this world and into the next.  Thank God for that.

I heard this song at church on Sunday.  I couldn't help but be filled with joy over these truths. 

Thank you for taking the time to read all that is on our hearts right now.  I am FAR from a teacher, leader, counselor, and am definitely NOT a writer.  However, I am thankful for this place to talk about my son, and his amazing Creator.

Lindsey

"We do not choose suffering simply because we are told to, but because the one who tells us to describes it as the path to everlasting joy."
- John Piper

Why is the unknown so scary?

My mind has been in a different place the last couple of weeks. When we originally found out about Brody's condition, all I could think about was losing our son. I was sad, hurt that my wife had to go through this, and mad that it happened to us. Now I am flat out scared. It is a scary thing to not completely understand how this situation is going to pan out; to not know how or when Brody will be born. We have to be within 30 minutes of the hospital all summer because at any moment Lindsey could go into labor and Brody could be born.  Lindsey is so excited to meet Brody. She prays that he will be healthy enough to come home. I have felt very guilty about this, however, the thought of bringing Brody home is intimidating. The connection that a mother has with their child is only felt by a father once the child is born. The connection I have with Brody at this time is nothing compared to what Lindsey has experienced. Once Brody is born the connection for me will start, only to have it crushed with the fate of this disorder.  Sometimes it is easier for me to not think about the reality of what we are going to face. The only problem with this is I will not be prepared for the heart wrenching feeling when our son is born. The reason I am so frightened about Brody coming home has everything to do with the fact that he will pass away at our house. I want to make sure I am there for every second of our son's life. I will take off work as much as needed to make sure I am with him. If I did it any differently I know I would have regrets for the rest of my life.  What gives me anxiety is not knowing how long he will be with us. If by the grace of God, Brody is with us for more than two weeks, do I go back to work? I know this sounds terrible, however, providing for Lindsey and Addison is a responsibility that I can't forget about. If/when I start working, what happens if Brody passes away when I am not home? Will I carry this on my shoulders for the rest of my life? To think that Lindsey and Addison are at home with our son who passed away... that feeling alone breaks my heart. Or what happens when we wake up in the morning and find that he has passed away in his crib? These are the thoughts that are consuming my mind. I have no answers to any of them. I pray to God that He provides clarity around this ridiculously hard situation. I pray that He makes the tough questions seem easy when the answers are needed. All I can do is have faith.

Brody
We celebrated Mother's Day today. You have the most incredible Mom in the world. Addison and I made her a card and made sure to include your name. I feel like I need to apologize for not feeling as close to you as your Mom does. It is hard for me as I don't feel your kicks, tumble rolls, and fist pumps your Mom tells me about. I talk to God every day regarding your health. I am not sure if this will change anything, however, it is the only thing I feel that I can do. If I could, I would do anything possible to give you the life you deserve. I love you with all my heart. You make me so proud.
Dad

Lots of smiling

Dear Brody,

Today was a good day.  Today, you and a bunch of silly 8th graders made me smile, all day long.   I was able to work in the classroom where I used to teach before your sister was born.  I have been there quite a bit this year, but you have not been with me for all of it, or at least you were not so noticeable until just recently.  Today I heard comments such as the following.  "Ms. Vaughan, why you so chubby?!" and "Ms. Vaughan, is that the same baby that you was pregnant with last time you were here (2 weeks ago!)" or "Why do you have to wait until this summer, it looks like you are going to have your baby like tomorrow."  I love 8th graders.  They are so special:)  I have always been drawn to special kids.  I wonder if God has been preparing me for someone as special as you?

These silly 8th graders asked about you all day.  They asked me when you were coming, they asked me if you are a boy or a girl.  They asked me what we are going to name you, and they asked me if I am excited.  It was so fun to talk about you today!  I told them you were coming this summer.  I told them you are a boy and that we have already named you, Brody.  I told them that I was soooo excited to meet you. 

I also talked to some other teachers about you today.  Since I think about you all day long, it is not difficult for me to find things to talk about.  You move a lot, and are most active between 9 and 10 pm, right around the time that we sing to you.  We know that you are going on 2 lbs, and think that you are headed there quickly, as it seems you have had a growth spurt this past week (at least I have).  Last time we saw you, your head was up, but now we think you are in the head down position.  You have been causing some serious heart burn for your mommy, reminding me that you are also getting taller and seem to be spreading out in there.  You are so loved!  We have learned that we are not the only people that like talking about you.  We keep getting letters in the mail, even from people we hardly see or talk to.  They are praying for you, thinking about you, and speak so lovingly of you, without having even met you.  (FYI- no one did that for your big sister)

I smile about you all the time, Brody.  You are changing the way I look at everything.  I am proud of you and so excited to meet you.  I am thankful for those 8th graders who would not stop asking about you today.  It caused me to spend much of the day looking down at you, your almost 2 pound body protruding from my tummy, so alive and busy and easy to LOVE.

Thinking of you constantly,
Mommy

OUR decision

Good Morning,

It is only 6:30 in the morning, but I am lying here in bed, thinking about a conversation that I had this weekend with someone who certainly does not understand our decision to carry Brody.  I do not need to tell you the name, and please do not ask; it makes no difference.  However, I am writing this as I realized that some people simply do not understand the decision we were faced with.  I stated in an earlier blog, that carrying Brody was a easy decision, one that did not take more than a few seconds for our heart to decide.  But it is also one that has been confirmed over and over again, and one in which we certainly understand the alternative.  Let me explain this to you, faith aside, for a moment.

At our 8 week appointment, just a few weeks after we learned that we were expecting a baby, we were offered a very standard first trimester screening.  This is blood work that determines the likelihood of a variety of genetic disorders, to either offer parents the option of terminating the pregnancy or to classify a pregnancy as "high risk" in order to watch the baby more closely prior to the 20 week ultrasound.  We opted against this for a few reasons; 1) these test often creates undo concern, when the presence of a disorder is still very unlikely, 2) our insurance does not cover this expensive testing, and 3) we would not terminate the pregnancy anyway.

This brings me to our decision after our 20 week ultrasound, just over a month ago.  At this point, Brody was almost 12 inches long and just about 1 lb.  His pictures reveal his perfect face, arms, hands, tummy, legs, and feet.  When we found out that Brody had Trisomy 13, we knew that it was an option to end the pregnancy early.  Ending the pregnancy early at this point means going to the hospital, being induced into labor, giving birth to a one pound baby boy, that may or may not be alive, and then choosing whether to hold him for a short period of time, or have him quickly taken away by the nurses, so that no bonding occurs.  I don't even feel comfortable talking about the next choice we would have had to make regarding what to do with his one pound body.

I am very sure that there are beautifully, wonderful people that have made this decision, and we in NO way judge them or look down upon them for that.  The decision to end the pregnancy early is not an easy way out, and does not come without consequences as well.  We have researched this, and discussed this with our genetic counselor and a family grief counselor (who works with families dealing with fatal conditions).  These individuals have seen many families dealing with this type of loss, and have assured us that we will not regret our decision. But, that they have seen many families suffer from regret and shame after ending the pregnancy early, and without wanting to, bonding to the baby that they carried and thought about for almost 5 months.

We are solid in our decision for these reasons, but also due to our belief that Brody is God's child and His creation.  We do not feel that it is up to us to decide when his life will end, and we are relieved that God will make that decision for us.  I will not ramble on any more about that right now, as I probably have plenty in other blogs.  I do want to say that I realize that since no one else is carrying this special child, that others can not possibly be as wrapped up with his life as I am;  I don't even expect Jason to be.  But since I love him just as if he was a healthy little boy that I am already able to hold and have dreams for, it was very difficult for me to have this little "discussion" yesterday.  I respect everyone's opinion, and also understand that it almost impossible to know exactly how you would handle the situation until you are in it.  So, to my lovely "counselor" who I know was just worried about me, and felt the need to attempt to change my mind....my mind is very made up.  Jason's mind is made up, and we are very thankful for the support of our friends and family, both those who support our decision, and those who simply support us, regardless of whether they agree with us.  Enough said.

love,
Lindsey