Good News...

This is the first picture of our newest love.  Back in early October we found out that we were expecting our third child.   We did not hide this news, but we certainly did not talk about it much.  In some ways we were protecting ourselves from getting too excited, in case something were to happen.  Our doctor encouraged us to do the first trimester screening, simply for peace of mind.  The first trimester screen is completed at around 11 weeks gestation and is a non-invasive screen for genetic disorders and some heart defects.  The test came back negative as there were no indicators in either the blood or ultrasound of any issues (the test is anywhere from 85-95% conclusive, depending on who you talk to).  Of course we were relieved, and started to believe that we could actually look forward to the birth of a healthy baby into our lives.

Now we find ourselves thinking both about Brody, mostly in positive ways, and this new tiny baby growing inside me.  We do not expect this baby to replace any feelings or love we have for Brody, just like he or she would not take that from Addison, but (as others have said) cause our hearts to grow with more love for another little blessing to our lives.

We have not shared this news with Addison yet, as she speaks daily of her little brother in heaven.  It is quite possible that God is asking her to warm our hearts and help us focus on the truth with her childlike faith.  She talks so honestly about Brody being "up in heaven", but that she would like to play with him or another brother some day.  She has been bombarded with Christmas music (since early November, thanks to her mom), and anytime the words talk of angels, Jesus, Heaven, etc, she exclaims, "this song is about Brody!"  I am not claiming that my daughter is some super Christian at age 2, but that the simplicity of her thoughts is encouraging and uplifting for both of us:-)

So, I am 14 weeks pregnant and grateful.  I actually do not wish anything thus far in our lives away.  Life continues to unfold, and God reveals how He works in everything for His good.  This does not seem all so clear every day, but most days we continue to feel so thankful that we were given a son that has caused us to become more interested in our eternal home and even eager to get there at times.  We also know that the little life that will come into the world in June would not exist if things would have been different with Brody.  We feel blessed to have been changed by it all, and pray that God does allow us to be challenged in this life so that we can become all that He wants us to be (and I still have a REALLY long way to go...I guess that means LOTS of challenges....)

Lindsey

Lots of processing...

It has been nearly six months since we lost Brody.  Most of the time it feels like it has been a few weeks.  Probably because, for some reason I chose to shut down a lot of my emotions after we lost him.  Prior to losing him, during the months that I carried Brody after learning of his condition, Jason and I tried very hard to focus on what was positive, our blessings.  There were many, and still are.  In doing that I was also trying very hard to shut down any negative feelings.  At times I would let myself be honest about what was sad, difficult, and confusing.  But most of the time I didn't.  Without any real direction from anyone, I continued with this approach after he was gone, even though many days it did not feel like it was working.

There have been several times over the past 6 months where I have felt God asking me to just talk to Him and be honest with Him. Just that simple urge to go to one of my books, journals, the Bible or even this blog.  But, that seemed too difficult.  It was going to take me back to that painful place where I had been throughout the previous months and especially on the day we lost him.  Most of the time I chose "distraction" instead.  The busier I kept myself, the better.  That way I would not have to think about how I really felt and how I so wished that Brody was here with me.

We began seeing a counselor in September, as I felt myself "losing it", to say the least.  I started noticing that I was not able to finish a page in a book, a short prayer, one small task on a "to do" list, or anything that required any sort of concentration.  I was becoming angry with Jason for things that I had never cared about, I found myself having no energy for basic daily tasks, and I could not remember anything for the life of me.  I was living day to day, with really no idea what was going on the next day, but rather just what we could do to breeze through the day.

 The counselor helped us realize that it does not matter how difficult our situation is compared to the next, that we needed to go through the stages of grief.  She encouraged us to be more real and to spend time "in"the grief.  For me this meant looking at Brody's pictures, watching a slide show of his pictures, reading from the many books that were given to us from loving friends and family, and talking about him. 

I have been reading a book called, "A Grace Disguised", by Dr. Jerry Sittser.  I think I will continue to read this book over and over again for the rest of my life.  Dr. Sittser has met me in the middle, acknowledging his pain while also focusing on his blessings.  He has gone through the unthinkable, losing three members of his family in one accident, and has come out with grace. (Now, I have decided I am NOT into comparing one's grief to another's, but let's just say that his loss seems like the absolute worst that one should have to deal with in a lifetime).  Through his book he talks about how he lives with the grief and pain of his loss every day to some degree, but that he also lives with the grace that has transformed him.  He discussed his broadened perspective, looking at his own loss in light of global experience.  After doing this, instead of asking the question, "Why me?" he began to ask the question,  "Why not me?".  Sittser says, "The experience of loss does not have to be the defining moment of our lives, instead, the defining moment can be our response to the loss.  It is not what happens to us that matters so much as what happens in us."

Sittser lost his mother, wife and daughter all in the same moment.  Although he very honestly longs for them to still be with him,  he has chosen to give thanks to God for giving him each one of them in the first place.  He acknowledges that he grew up in a healthy and safe home with a loving mother that he developed a good relationship with, he is thankful for that.  He feels blessed to have met and married such a wonderful woman, whom he loved dearly, something some people never get the opportunity to experience.  And he had a beautiful daughter that he raised for 4+ years and that he will be with again someday.  Above all, Sittser talks about his relationship with God and the undeserving grace that He provides him with every day.  Sittser knows that God suffered too, when He lost his own son, and that He suffers every day with us as we deal with our pain and loss.  He also knows from the depths of his heart that this is just our temporary home, and that if he is patient, he will be with his loved ones again one day, for ever and ever.

I love his perspective, and on most days it makes so much sense.  When I think about how God, or even Brody, looks at me and my pain, I know they are just saying, "if you only knew."  When I feel grounded in these truths that Sittser talks about (which are all biblical, as that is his source), I no longer feel sorry for myself and in addition, do not fear what may come in the future. I am very aware that this will be something I will need to continue to be reminded of, which is why I plan to read this book over and over again my whole life:-)

Sittser also discusses God's sovereignty, His complete authority over the universe.  This truth about God has been a challenge for us over the past year, as we have witness great loss in our family and friends lives and also in dealing with the "whys" of our situation.  Mostly, "if God is sovereign than why did he create a sweet little boy who was unable to live?"  Our faith has been challenged, but ultimately strengthened, as God has been present and I see no other way of dealing with pain and loss that with Him.  (I will leave the various perspectives on God's sovereignty up to Sittser...it is hardly possible to explain this without writing a novel of my own!)

So, when I am honest with myself and with others, the truth is that there are many days when I feel like I just wish Brody could have been healthy and stayed with us.  I see other moms with their healthy babies and just wish my life could be like there's.  However, MOST of the time, deep down in my heart, I am thankful that we were given Brody.  God gave us Brody.  He didn't have to give us anything, not Addison or Brody.  But he did.  We have a son, our second child, that is safe in heaven, waiting for us.

That, however, brings me to something that has been on my heart from the months I carried Brody till now, all the time.  Some people, and it seems like many these days, are never able to carry a baby; some cannot conceive and some conceive only to find out over and over again that the baby did not even make it through the first few weeks.  This form of loss is far more difficult for me to process than the loss of Brody.  I pray that God is present for these families and that He reveals His grace to them in obvious and real ways.  I pray that God blesses these families and that His sovereign plan for them brings as much joy to them as anything they could have imagined.

All that said, I find myself coming full circle.  I could say that I although I have depended on God through much of the last year, I have also turned away, tired and frustrated.  I have found myself caught in a pattern of choices, in order to deal with my pain in the moment, that leave me more empty and sad.  But, when I crawl back to our Father, asking Him to carry me through this life, both the good and the bad, I find the grace and peace (and sometimes joy) that I once felt and know I can experience during this life, no matter what it brings.

Lindsey

Hope and Hearts Walk

It has been a roller coaster of a summer.  Just this past Saturday we celebrated Brody and the huge part he has played in our lives.  We participated in a memorial walk with our family and friends to honor him and to participate in raising money for the Missing Grace foundation, that benefits families dealing with infant loss, stillbirth, miscarriage and infertility.  The walk honored MANY sweet babies and families that have gone through something similar and difficult. 

It has been over three months since we lost Brody.  There have been some very good days, a lot of mediocre ones, and some pretty tough ones.  We have learned that no matter where we go or what we do, there is still something deep and difficult fresh in our minds.  We have learned that it is better just to talk about it when the feelings are there...being positive all the time does not make things better, but rather causes the anger, anxiety, fear, and sadness to come up in a variety of other ways.  We have also learned that being brave and strong does not mean doing this all on our own. 

Brody's pictures are up in a very prominent place in our home.  I think we will always have them there, where we can look at them and talk about him.  He was beautiful and perfect.  We talk to Addison about our little Brody in heaven quite a bit.  Actually, on Saturday after the walk we had our own little "balloon release" where 15 of us each sent a blue balloon up to Heaven for Brody.  Addison liked this idea!  We like to believe that he is able to watch us, and listen to us talk about him.  We picture him a young boy, able to run and play, and so wishing that we could see it all from his perspective.  We are trying.

It has been a long time since either of us have written in this blog.  That is mostly because it has been very hard to think about June 12th and how we wish that it would have been so different.  We still wish that he would have stayed here with us, and ever since his August due date it has been nearly impossible to go a day without thinking about what we would be doing if he was here.  We miss him and are so thankful that he was created.  We are grateful that he is our son.


Lindsey & Jason

Brody's Birthday-Part 2

Our time with Brody was so precious and memorable.  We could never have anticipated it being this way.  Just the day before, we were devastated when we found out that we had lost him already, but the second we were able to hold him in our arms, we were filled with peace and overwhelming love for this little boy.

We found comfort in knowing that he did not have to experience any pain.  God again took charge of this decision for us, and provided the 'comfort care' Himself.  Brody looked like a beautiful, sleeping baby;  one that had peacefully gone to be with his Heavenly Father.  He was beautiful in every way.  We felt our faith deepen as we found ourselves wholeheartedly believing that Brody was no longer a little baby with a condition that was incompatible with life, but rather a healthy little boy, sitting on our Father's lap, possibly looking down at us, asking us to be okay.

We decided to have a photographer from Now I Lay Me Down To Sleep come to take pictures of Brody and our family with him.  We were so glad that she came.  Allison volunteered her time to capture each and every detail of him.

His hands...

and his feet...

At first we were not sure if we wanted a photographer to come.  This was part of our plan if Brody would have made it through delivery, but when we found out that he had already passed on, we were honestly a little scared about what holding him, taking pictures of him, and sharing him with our family would be like.  We decided to focus on our love for him and honoring him, rather than our concerns and fears; we were so glad that we did.

Our family took turns coming into to our room to "meet" Brody.  I am sure this was extremely difficult and at least as scary for them as it was for us.  But our parents, our siblings, and our dear friend Jill all seemed so comfortable and full of love.  We asked my brother, Trent and our sister-in-law Alyssa to come in first, as they are Brody's godparents.  After they spent some time with us, the rest of our family took turns coming in to hold Brody.  I think any fears were overtaken by how precious and peaceful he was, and of course the overwhelming presence of our Father.  It was good.

A wonderful couple who are pastors at our church came to be with us after Brody was born.  We asked them to baptize Brody.  Although we were already very sure that Brody was in Heaven, we needed the baptism for ourselves.  We wanted to thank God, as a whole family, for giving us Brody.  We wanted to thank Him for taking care of him, and for taking care of us through all of this.  We wanted to baptize Brody, just like we baptized his sister.  Pastor Rich and Pastor Jody carried out such a beautiful service and again, God was so present.

In addition to the decision to have Brody baptized, we also decided to have Addison meet Brody at this time.  We had been taking the approach of being honest with Addison, in two year old terms, and felt that allowing her to see this baby brother we had been talking about for many months, was the right thing to do.  Addison did so well.  She gave her little brother a stuffed bear, blew him a kiss, looked very closely at him, and said "bye Brody" as she left the room.  Just tonight as we were putting her to bed and saying prayers and thanking God for baby Brody, she said, "Baby Brody came out."  We are not exactly sure what she is thinking, but we know that she certainly has not been affected negatively by this, and we are so glad we have been honest with her.  "Baby Brody is in Heaven with Jesus.  Baby Brody is happy."

After our pastors and our family left, it was time for Jason and I to have some alone time with Brody.  We did not want to let him go, and I think in some ways we just felt like he would wake up, that this would all be over, and we could take him home like the other families in the hospital.  About four hours after we got to hold Brody for the first time, we decided it was time to let him go.  We wrapped him in a blanket that was made just for him by his Nana.  We cried, and kissed him, and held him as close as we possibly could, and then let our nurse take him away.  We then needed to focus on our sweet son in Heaven.  Thank you Lord for taking care of him.  We know he was already with you this whole time.

We are doing okay.  We are thankful that God has continued to make some sense of this all for us.  We are thankful that He has provided so many amazing people in our lives...one of His ways of reaching us so tangibly on this earth.  We also know that we are not alone.  We know that many others are dealing with very difficult situations, some that do not seem to make any sense.  We are praying for you.  We pray that God can provide some answers and reveal the blessings.  We also pray that you will find the strength and the faith to know that your questions that cannot be answered, someday will.  That if you patiently and faithfully wait, He will be there, providing the peace and joy that will pull you through.  We are finding that this is something we need to ask for daily.

There is still so much more that we want to share.  Especially our gratefulness to our friends, family, church and the support from people that we don't even know.  Just when we are beginning to feel weak, your emails, cards, text messages, phone calls, meals, flowers, and thoughtful gifts, remind us of how much love this little boy has brought to the forefront of our lives.  Thank you!

Love,
Lindsey & Jason

Brody's Birthday- Part 1

"The Lord gave and the Lord has taken away; may the name of the Lord be praised."
- Job 1:21

Here is our beautiful boy.  Brody Paul Vaughan was delivered into our Father's arms before we were able to deliver him into our own,  but we continue to feel peace.  I could not resist sharing this picture for another day; we have been admiring how perfect and peaceful he is, and are trying to decide whether he looks more like mom or dad.

It has been difficult to find the motivation and energy to write about our experience last weekend, but it is simply all we can think about and we certainly want to share more of him with you.  We are finding that as we share Brody with family, friends, and people that we don't even know, the love and support pours back to us, carrying us through the next difficult moment or day.  It is so important to us that Brody's life matters, and you are all confirming to us that it does.  Thank you.

Last Saturday, June 11th, we spent the morning in the car driving to and from a cabin in the Bay Lake area with Jason's parents, Rick and Jan.  I had not felt Brody move much the prior day, but had kept that to myself to avoid causing Jason to worry unnecessarily.  In fact, I remember many days when I was pregnant with Addison, where there was little to no movement, but then the following day she would make up for it.  So, I decided to use the four hours in the car to decide if there was something to worry about.  Brody has been a very active baby, so when all four hours went by while I was sitting still in my seat, and I did not feel a single movement, I began to worry.  When we arrived back in the Cities, I called my doctor and she asked me to come into the University Medical Center as soon as possible to have a ultrasound.  We left Addison with my parents and hurried to the U of M. 

When we arrived, they brought us back into a room for the exam.  Our doctor quickly started the scan and within seconds looked at us with a serious face and said, "I do not see any movement, and I do not see a heartbeat."  As we began to lose it, she said, "I'm sorry, but I must continue.  I need to be 200% sure."  I could no longer look at the screen, so I just kept my head in my hands while Jason wrapped his arms around me.  Our doctor's final words were, "I am so sorry, but I am afraid that this little guy is gone.  I will leave you two alone."  We sat there weeping and asking God and each other, "Why?"  We had been praying specifically for time with Brody.  That is all we wanted, just a little time to look him into the eyes and tell him how much we loved him.  I was supposed to still have two months to carry him, proudly, while he moved around inside of me.  We had planned our summer around him, because we wanted to.  We were not ready to let him go, not even close.  (I will let Jason pick up from here.)

It was around 2:30 PM that Saturday when we were given two options; either go home and come back within a week to be induced, or check into the hospital that day. Between the two of us, we couldn't imagine going home and then having to come back. We checked in that day and they induced Lindsey at around 5:00 PM. The doctors were not certain as to how long the labor would last, but they thought Brody would be delivered sometime on Sunday. Our family came to visit us on Saturday night. We spent a lot of time talking and getting ready for what was to come Sunday. That night we didn't sleep much. Between the nurses coming in every hour or so, the anxiety of "when", and the fact that we were in a hospital, sleep was the last thing on our minds. We decided to get out of bed at 6:00 AM on Sunday morning. The nurse let Lindsey and me go for a walk and get something to eat in the hospital cafeteria. We spent most of the time in silence, simply knowing what the other was feeling; we were not ready to give Brody up.  The rest of the time we spent discussing Lindsey's options regarding pain relief during the delivery. As much as this was Lindsey's decision, I didn't want her to remember this day as one filled with both emotional and physical pain. Lindsey made the call and the epidural was done at 9:00 AM. At this time, her contractions were less than a minute apart. As the pain drifted, Lindsey's eyes started to close as she fell asleep. I let her get some rest and went to greet our family in the room next store. 

About a hour and a half later, Lindsey's water broke. I ran back into the room and saw Lindsey in tears. She looked so terrified. I ran to her side and grabbed her hand. I had confidence at that time that only God can deliver. It was the same confidence that I had when I got off the phone with the doctors the day that we found out about Brody's condition. The doctor and nursing staff rushed into the room as Lindsey laid there in tears. As the doctor worked, I couldn't help but look to see our son's body. That image will be burned in my mind for the rest of my life. The nurse quickly wrapped Brody's body in a blanket and placed him in Lindsey's arms. He was so beautiful. We couldn't see any imperfections, all we could see was our perfect little boy. 

During Lindsey's pregnancy with Brody, I never felt the same connection as she experienced. Her love for him was so strong, much stronger than mine. The second I saw Brody, he became real. He is my son. At that moment I experienced the connection that Lindsey had been talking about for months. The only problem was that he was no longer with us.  

(we will update more at a later time)

Update

Dear Family and Friends,

We have been trying to find the energy to provide you with a glimpse of our very special day with Brody this past Sunday.  We do so look forward to sharing more of Brody's story with you, but to be honest are feeling emotionally overwhelmed at this time.  We felt more deeply in love with this child than we ever could have expected, and miss him soooo much.  If we had it our way, we would still be carrying him, and waiting for our time with him.  It came and went much too quickly, so we are clinging to the fact that sweet Brody is with our Heavenly Father and many other dear friends and family that have gone before us.  We know that we will be with him again one day, but we so don't want to wait right now...we still want more time here on this earth.  Brody was precious and beautiful and perfect.

We have really appreciated the outpouring of support from our extraordinary family and friends.  My how you have all managed to lighten the load a little, carrying us, with our Lord, just as He promises.  We are thankful for you all and continue to feel so blessed by our Brody.  Between the two of us, we are determined to record every detail of Brody's birthday weekend, celebrate him meeting our amazing Father, and to be able to share it all with you.

Thank you for taking the time to read all that is on our hearts.  You are helping us to make this sweet baby boy's life significant, as it so deserves to be.

Love,
Jason & Lindsey

"I asked the Lord to give me this child, and he has given me my request.  Now I am giving him to the Lord, and he will belong to the Lord his whole life."
- 1 Samuel 1: 27-29

Brody's Birthday

Our sweet Brody was welcomed into Heaven today.
We have peace knowing he is in the hands of Jesus, looking down at us with a smile filled with joy.
We will miss our little buddy, however, we know we will see him in the future. 
We will share more about our special day with him later.

Visit to Brody's Birthplace

This past Tuesday afternoon, Jason and I had the opportunity to visit the University of Minnesota Hospital, where Brody will be born.  We had no idea what to expect, or much of an understanding of who we would be meeting with, but certainly were eager for more professional opinions regarding Brody's care after he is born.  Fortunately, the Director of Neonatology, Dr. Thomas George, stepped into the waiting area and called our name.  We quickly came to understand who he was, and more importantly, that he cared about each and every life he was dealing with.

Dr. George's first question for us was, "does your little boy have a name yet?"  He had already gained our trust.  We were then introduced to the social worker that we will be developing our birth plan with, and another genetic counselor.  I was certain that I was going to be strong throughout this meeting, focusing on the important decisions and listening closely to all of their professional advice.  But after we all had sat down at the table, and everyone had introduced themselves, I began to lose it.  I guess I was not prepared to talk about the different ways that my sweet son may die.  When I thought more honestly about it, that is exactly what we were about to discuss.

Clearly these gifted professionals have dealt with many families dealing with this type of loss as they began to say things that were comforting and compassionate.  Jason and I again started to feel as if Brody is the most important child being born in 2011, and that they had all the time in the world to listen, educate and assist us in making the best decisions for Brody.

We have been strongly leaning towards "comfort care" (or palliative care) for Brody after he is born.  The goal of this approach is to make your baby as comfortable as possible along with avoiding any interventions that will simply prolong the inevitable.  If the doctors continue to confirm that Brody's condition is incompatible with life, and that interventions such as oxygen and feeding tubes will only prolong his death, possibly causing him to feel more discomfort and stress, then we do not want to put him through that.  That being said, I have been having a difficult time finalizing this decision.  I want to be completely informed of all of our options, understanding just why some people choose certain levels of intervention, and what the outcomes have been.  I want to KNOW that doctors do not simply give up on these children, and that if Brody's condition after he is born reflects healing or appears hopeful, that we are ready and able to take a different approach and support him appropriately. 

Fortunately, Dr. George has cared for many babies with Trisomy.  As we listened to him speak about our various options, it became very clear to us that he too believed comfort care was the best decision for our child.  In short, he explained to us that a few hours with Brody up to a few days was the most likely scenario.  He explained that many families choose this approach so that the focus of the short time with their child can be on loving them, holding them, and allowing them to pass on peacefully and naturally.  We did spend time discussing the least invasive interventions, as we know many loving and well-educated families choose these options.  But, Jason and I feel most comfortable leaving Brody's life in our Father's hands as much as possible, and want to avoid having to "remove or turn off" any intervention at a later time.  We feel so much peace in knowing just where Brody is going from here, and do not want to keep him from that perfect place where his condition will no longer exist.

We did not have to put any decisions in writing, and the plan can be changed at any time, even after Brody is born.  However, at the end of our meeting we both felt a lot of clarity and confidence in our thinking, and were definitely thankful for the amazing team that we are working with.  When Dr. George asked us if there was anything else we wanted to discuss, I could not help but thank them for respecting Brody so much.  I wanted them to know that we so appreciated them calling him by his name throughout the meeting, and for valuing each decision about his life even when they cannot ultimately do anything to change the outcome.  We looked at this brilliant doctor in the eyes as he began to cry.  Hopefully, it was because he feels tremendous satisfaction helping families like us work through these tough decisions.  And hopefully, he knows that although we would give anything for Brody to stay here with us, we are just looking to him to assist us in making Brody's transition from our care to our Father's care as perfect as possible.  And hopefully, he knows we see him as yet another way God is able to work directly with us here on this earth.

Thoughtfulness and Wristbands

It has been a while since we have updated our blog, probably because we have been "coasting".  Jason and I were talking this weekend and realized that we had both been taking the same approach over the last couple weeks.  I am not sure if it was our doctor's recommendation to me to limit the amount of time that I ask Jason to talk about Brody, or that I was not getting any sleep because I was staying up late into the night reading about other families and their stories, or if Addison's demands for all of my attention where successful.  Nonetheless, I have found myself taking a break from "thinking so much" and rather choosing to focus almost all of my energy on other things.  I have chosen to avoid conversations and thinking about birth plans and death plans...it was becoming just too overwhelming.  We have an appointment at the University of Minnesota Hospital this Tuesday, and will need to discuss and deal with "the tough stuff" at that time.  I think I feel somewhat refreshed and am ready to deal with some difficult decisions and to face the reality that our time with him is drawing closer.  Of course we have no idea what our time with him will look like, but continue to trust that it is in our Father's hands. 

We have been overwhelmed by our family, our friends, and even people that we don't even know.  We are learning that Mr. Brody has quite the fan club, and again and again are reminded that we are so blessed to be the parents of this special little boy.  Thank YOU for providing us with those reminders:)

Very thoughtful friends of ours decided that other people (besides Jason and I) should be able to "carry" Brody with them as well.  Susan and Bill Pauling ordered blue wristbands that read "Blessed by Brody   Jeremiah 1:5" with the idea of raising money in his honor.  Again, we are overwhelmed with gratitude by the idea of this and are trying to wrap our heads around the numerous ways in which people show interest, concern, and their desire to help.  Your prayers and encouraging words have been more than enough, and are simply carrying us through this time.  That being said, we do understand that some people feel prompted to help in additional ways.  Here is a pic of the blue wristbands that we have been wearing proudly all weekend.

The thoughtful coordinators of the "Brody Wristband" have distributed them to other thoughtful friends of ours in order to get them out to thoughtful people who want them (yes, thoughtfulness has been a theme through all of this).  They are asking for a $5 donation that will go to a organization that we have chosen in honor of Brody.  Jason and I decided to spend some time looking into organizations that support disadvantaged children as we have had other interested people ask about memorials for Brody.  We feel strongly that any money donated in honor of Brody should go to children who still have a shot at life, but do not have a mom or a dad and the resources for a healthy life without support.  We have set up a donation page with a organization called "Friends of the Orphans" which supports children in Latin America and the Caribbean who have been orphaned or abandoned and are certainly disadvantaged.  If you are interested in learning more about this organization, you can visit Brody's donation page which has links to the organization's homepage.  Also, we would be happy to send you a wristband if that would be easiest.  Just shoot me a email at lindsey_vaughan@hotmail.com.

www.friendsoftheorphans.org/BrodyVaughan

Please know that we do not expect people to give financially or wear a wristband, and that this has all been yet another unexpected blessing from Brody.  Again, your prayers and supportive words have lifted our spirits, and revealed God's greatness to us.  We cannot say "thank you" enough, and ask that you continue to keep us in your prayers over the next few months.

We will certainly be providing a update after our visit to Brody's birthplace tomorrow.  Our next check-up and ultrasound is still a week away, but I can tell you now that if a baby's movement is any indicator of their strength, little Brody is going to be a fighter.  He has not stopped moving for several days now, and is putting my belly into all sorts of strange positions and shapes.  I pray that he comes into this world kicking and screaming like a wild man:)

Love,
Lindsey

"I knew you before I formed you in your mother's womb.  Before you were born I set you apart and appointed you as my spokesman to the world."
-Jeremiah 1:5

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

Wait

This poem was sent to us in its published and illustrated form by the strong parents of a wonderful friend of ours.  We are so thankful that God has put such wise and faithful people in our lives to encourage us in this time of waiting.  I hope that these words will connect with you as they have with me.

Wait

by Russell Kelfer 

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, "Wait."

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.

"My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign.

"You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply."

Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?"

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.

"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait."

Dear Lord,

You are sufficient grace, you are true joy, you are loving, powerful, our comforter, and an infinite God.  I confess that I am not good at waiting.  I have always had a "plan" and have been very focused on it falling into place just the way I thought it was supposed to.  I have not depended on you, but rather gone on ignoring you for long periods of time, simply not believing that your grace is sufficient.  Thank you for our Brody.  Thank you that your plan for his life is far greater than our finite minds can comprehend.  Thank you for the AMAZING people in our lives that are helping us stay focused on You, we certainly are not capable of doing that alone.  Lord, I ask that you allow us to spend time with Brody.  Please let us look into his eyes and feel his heart beating.  Allow us to continue to feel at peace no matter what happens.  Lord, I ask that you work in the lives of our friends and family that are also going through very difficult times right now.  Make yourself so real to them!  Give them Your peace so that they know that You are good and that You will always come through.  


Amen

My new favorite song

I included a link to this music video above as well, but wanted to make sure that you did not miss it.  I have been watching it over and over as constant reminder of how our God works.  Moreover, I wanted to acknowledge that there are people in my life, and maybe others reading this blog that I do not know, that are going through some very difficult times right now, or have in the past.  I have been touched and inspired by many of you.  Without comparing our situation to any one elses, as they are all so different and unique, I think that this song just may apply to each of us in some way.  These are the lines that have stuck with me these last few weeks.


"What if trials of this life are Your mercies in disguise."

"We doubt Your love, as if every promise from Your word is not enough."

"Pain reminds this heart that this is not our home."

"What if my greatest disappointments, or the aching of this life, is the revealing of a greater thirst this world can't satisfy."

Lindsey

Coincidence or God's Work...

Another week has passed and Lindsey and I are coming more to grips with the fact that this is real. It all seemed like a dream at first; however, we are definitely feeling the reality of it now. We had an appointment with our genetic counselor and physician this past Wednesday. The purpose of the appointment was to get another read on the ultra-sound and determine if anything has changed. We were so excited to get new pictures of Brody and get a chance to spend some time watching him move around. The appointment went really well. The group that we are working with has done a great job explaining everything to us in detail. The main concern, besides that fact of Trisomy 13, is that Brody’s heart has a major defect in the upper chamber. It was confirmed once more that Brody’s life will be short. Before we left our appointment, the genetic counselor left us with a packet of questions we needed to think about before Brody is born. A lot of the questions had to do with the type of care we would like for him. The one question that hit me hard was around our plan for his funeral. It is crazy to think about planning a funeral for your son when you haven’t even had the chance to introduce yourself. I know absolutely nothing about funerals. How do I determine where my son should be buried without knowing where I will be buried?  

During the past week I have thought a lot about how Lindsey and I have been able to get this far without completely falling apart. I was talking to my brother the other day and he was curious how we were staying strong during this time. He stated how easy it would be to push away from God, place blame on Him, and be angry towards the situation we were given. It’s funny, because just one month ago I would have said the same thing. But, when you are dealing with a situation that is completely out of your hands you have no option but to have faith.

As I think about the last 3 weeks, it amazes me how God has blessed us with so many signs. Some may say they are pure coincidences, however, I beg to differ. Out of all the genetic counselors we could be given, we were assigned to a woman that is our age, lost her son to Trisomy two years ago, and believes that God is the only answer during this time. At Addison’s two year check-up our pediatrician walked in the room and immediately noticed something was wrong with Lindsey. She explained our situation and he dropped right to his knees and asked her if he could pray. He went on to state that with our permission he would like to be there with us when Brody is born. We never told him we believed in God. That was a bold move for someone that didn’t know our faith. My Grandma called me this past week and wanted to talk about Brody. I could tell she had tears in her eyes as she was talking; it was then when she told me a story that hasn’t been discussed in over 50 years. She too lost a son. His name was Stephen and he passed away at the age of two. She told me the whole story of his life. She ended by saying that there is not a day that goes by where she doesn’t think about him. The only thing that got her through the hard time was that she knew God had a greater plan. I have never talked about God with my Grandma. I honestly never knew if she had a faith.  Being that our situation only happens in up to 1 out of 25,000 pregnancies, how is it that three women have contacted Lindsey in the past two weeks that recently lost their son or daughter to this disorder?  Each one of them has gone out of their way to meet Lindsey and share their story. They have provided a great deal of clarity and comfort. We never advertised our situation and asked for a call. They just stepped up and delivered when we needed them most. How about our Pastor Rich? He not only wants to help us through this time but has offered to be with us at the hospital when Brody is born. It just happens a good friend of his lost his son to this same disorder and he would like nothing more than to hold our hand during the moments when Brody passes. Or the email I received a 2 weeks ago stating that a Bible study was forming in my office with my good friends. Out of nowhere a bunch of guys that I respect deeply decided to form a gathering to support each other’s faith. They didn’t even know my situation at that point. I know that God has a part in all of this and he will continue to spread light on our situation. I still don’t understand why this has happened to us, however, I have peace knowing he is involved.

Brody,

This past week we celebrated Easter with your family. You were on our minds the whole time. I was also able to feel you kick for the first time. You’re a stud! I can’t believe how strong you are and to think you’re only 1 pound. You are bringing a lot of joy to our lives. Your Mom and I are so excited to meet you. I pray that you stay strong so that we can share some time together. I love you with all my heart.

Dad

What we can expect, and what we pray.

Since we posted our blog this past Wednesday, we have been very encouraged by our family and friend's interest in Brody.  Thank you all for caring so much about him!  I am very sure that one way God is working through this is by showing His great love through all of you.

In my last blog I mentioned some updates that they specialists had given us on Brody's condition.  We are working with the Maternal-Fetal Medicine group out of Fairview Southdale Hospital in Edina.  We were informed that there is another good group of specialists in the area, called Minnesota Perinatal Physicians, but we have been more than pleased with our experience at MFM.  The genetic counselor that we were assigned is a mom that lost her first son to Trisomy 18.  She has gone completely out of her way as she is so genuinely empathetic.  The physicians have provided much more than medical information, but also sincere advice regarding the implications of losing a child in this way.  Most importantly to us, they are treating Brody like the precious and important baby that he is, completely ignoring the fact that no matter what they do the final outcome is the same. We are so thankful for this and pray that we continue to work with people that treat Brody in this way.

We have decided to deliver Brody at the University of Minnesota Medial Center and Amplatz Children's Hospital.  One of the perinatologists from MFM will deliver Brody, and the neonatologists from the U of M will be in charge of his care.  We have been told that these physicians are familiar with babies with Trisomy, and not only will they be able to provide more specialized care, but that they are also better at working with families who are expecting a loss.  Additionally, Addison's pediatrician has generously offered to be there when Brody is born, as he wants to be involved in his care.  (When we brought Addison in two weeks ago, he asked how the pregnancy was going, and was on his knees in prayer immediately after hearing Brody's prognosis.)  I am not going to overlook God on that one...He just continues to bless.

Since Brody's heart is the main concern, the specialists have discussed with us the possibility of doing a echocardiogram to take a even closer look.  We have opted to pass on this test as it will not change our course of treatment, and is likely to increase our concern for Brody.  We continue to pray that his little heart keeps on beating so that we can feel it with our own hands.

We also learned more about Brody's omphalecele.  (An omphalocele is a birth defect in which the infant's intestine stick out of the belly button and are covered by a thin layer of tissue.)  These can occur in healthy infants and are usually surgically repaired within a few days of birth.  Due to the risks related to surgery for Brody, we have been advised and will most likely choose to avoid anything too invasive.  However, we were encouraged to hear that Brody's omphalecele is very small and will likely heal itself prior to birth or respond to noninvasive treatments shortly after birth.  We pray that this is true and that this small defect will not have any effect on Brody life.

We discussed the probability of Brody coming early.  They recommended that we stay very close to home and the hospital from 32 weeks on, but that there still is a reasonable possibility of Brody going full term.  At first we thought that it would be tough to totally rethink our summer in order to wait for something so difficult, but fortunately it has not been tough at all.  We pray that Brody hangs in there for the full 40 weeks and we want nothing more than to be as close to the best care for him as possible.  It is likely that the longer I carry Brody, the longer he will be with us after he is born.  Again, we are just thankful that he is with us right now, and whatever rearrangements need to be made, they will be made simply because he is alive.  We hope to have to "rearrange" for our sweet boy as long as possible.

Decisions about his care after he is born have also been on our mind this past week.  However, we are feeling at peace with our approach to his life; that it is not in our hands.  We do not think we will intervene in any significant way, other than to keep Brody totally comfortable.  It is difficult to talk more specifically about this right now, but it has been comforting knowing that he will be okay every second that he is with us.  We hope that God continues to provide peace and clarity around these big decisions.  

Jason continues to ask the same question over and over; whether Brody's condition will increase the risks for me during the pregnancy and delivery.  The answer is no.   At first Jason was so sad that he was going to have to watch me go through the physical aspects of this and not be able to do anything to change it.  After almost four weeks, I think I have convinced him that I am the lucky one that gets to spend 24 hours a day with this special child.  (God, thank you for letting Jason feel Brody kick for the first time last night. )  I pray that Jason can spend 24 hours in a day with our son.

I have only touched on a few of the many decisions that we need to make over the next couple months.  We simply are not ready to even discuss some of the "to dos" that exist for parents facing this type of loss, and definitely need more prayer to find peace in the others. 

I need to say again how thankful we are that you are taking the time to read about Brody.  We KNOW that prayers are being answered, and we are sure that without them we would not feel the peace and clarity that we do. We also believe that God wants to hear our specific prayers about all of this, as He wants to be involved and cares more deeply than anyone.  This weekend we celebrated the greatest sacrifice of all.  No one understands losing a son more than our Heavenly Father.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Phillipians 4:6-7

23 Weeks

This is our studly dude!  We were able to see him this morning for a whole hour!  During the ultrasound he was moving around a lot and was even practicing his breathing, opening and closing his little mouth.  Brody is weighing in at 1 lb, which puts him at about the 25th percentile as compared to other babies at 23 weeks.  At this point the doctors have explained to us that Brody's heart is the main issue.  His heart has some significant defects in the upper chamber and is shifted towards the right side of his chest (typically it should be to the left).  Although he does have full Trisomy 13, and ultimately the outcome will be the same regardless of the specifics, they are not able to identify any other major defects at this point.  This was good news for us, as we care deeply about every last detail regarding Brody and are concerned about making the very best decisions for his care.

We appreciate you reading about our little guy!  We are thankful that he is with us right now, and we are not going to waste any time sharing him with you!

Lots of love,
Jason & Lindsey

Week 2: Confusion...

The last week has gone by so fast. In some ways it was good as work seemed to keep me busy.  But it is also very difficult because I know that the reality of Brody’s life is coming soon. Lindsey and I have been very blessed to have so many great friends and family step in and support us during this time. We are overwhelmed with love and support. The hardest part for me has been to talk about our situation. I understand the importance of talking about ones feelings; however, I am very confused about how I should be acting. I have been very lost with my emotions. I cried so hard the week we found out and now I almost feel emotionless. I find myself telling friends and family that we are fine, that will get through this together. I am confident that we will get through this together, but it is not easy. We are not fine. Am I just telling myself this to get through an awkward conversation? There is nothing easy about our situation; however, it makes for a very difficult conversation with loved ones as they deeply care about how we are doing. What do you say when someone asks you “how are you doing”? The fact is, I don’t know.

I know that our journey will become clearer as time progresses; however, every day that passes our reality gets closer. I think the reason I am so confused is that I don’t know what to expect. So many statistics have been thrown at us, and I don’t know where our situation sits. I am one that likes a plan; however, it is hard to plan anything when you don’t know what variables we are dealing with. We have an appointment this Wednesday with a team of physicians. They will be taking another ultra-sound to determine Brody’s growth. Depending on what they see in the ultra-sound, we are hoping to get more information to answer the questions of; Will Lindsey go full-term? If so, how long will Brody be with us? What will be the factor that determines our son’s passing? It is very difficult to know in advance that you will lose your child, however, it is extremely difficult to not fully understand the events that will lead up to his death.

Our daughter Addison has been an absolute blessing in this situation. She has brought so much joy to our lives that it is hard to stay sad. Recently she started asking questions about ‘baby Brody’. She seems to think that she has a baby in her stomach just like her Mom. The other day she told us that she was going to give her favorite stuffed animal to Brody when he is born. My heart aches when I hear her talk about him. I have no clue how we’re going to explain this to her. I know that she is too young to fully understand the situation, however, I see how excited she gets when his name is mentioned.


Message to Brody:

My little buddy, your Mom and I are so proud of you. I look forward to every night when we sing you a song before going to bed. This is the one time during the day where I feel like I am spending time with you. I know that time on earth is only a fraction of eternity. And God says that you and I will spend eternity together in Heaven. When this day comes, I promise you this; I will never leave your side.

I love you buddy,

Dad

Thank you, Brody.

Dear Brody,

Throughout my adult life, I have found comfort in believing that our God sometimes allows "bad" things to happen, but then promises to be there for us when they do.  That God has the power to bring blessings through difficult times, and can turn very ugly situations into partially positive ones.  Although I know that I certainly will never grasp the way our indescribable and incomprehensible God works, I do not believe that God allowed this to happen.  I believe that God purposefully created YOU, Brody, to be just the way that you are.  I do NOT believe that He made a mistake with you, or even that He allowed a glitch to occur when you were conceived...I believe you were perfectly and wonderfully made...and I am so proud of you.


You have not even "entered" this world, and you have already began to bless us.  For most of my life I have felt very in control.  For the most part, things work out as I "plan" and hope for them to, and although I have always prayed that I want to depend fully on God, I have not always believed that I had to.  Mostly because depending on myself, and those closest to me, seemed to be working just fine.  On March 30th, when we learned of your prognosis, depending on myself was not an option.  I was totally out of control, and even though your dad and I would have done anything to change what we had heard, we knew that it certainly was not in our hands.  But God was there that day, Brody, and He was present in a way that was more real for me than ever before in my life.


Over the last two weeks, God has provided many other blessings through YOU!
1) Incredible love for you.  I did not know that it was possible to love you this much, and experience carrying you in such a positive way, before you even arrive! 
2) Your mom and dad's love for each other.  Brody, I have never loved your dad as much as I do now.  I am very certain God is determined to bind us even closer together through our love for Him and you, our beautiful son.  You dad is amazing and I am absolutely positive that there is no one else in the world that I would choose to be your dad, Brody.
3) Irreplaceable family and friends.  You bring out the very best in people, little guy.  Your mom and dad have some seriously compassionate, encouraging, thoughtful and loving people in our lives.  This we were aware of, but we have found that your uniqueness has brought out the very unique gifts in these special people, and for this we are so thankful!

Thank you Brody.  And thank you Father, for creating our Brody so perfectly, for YOUR very special plan.

Love, Mom


"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Phillipians 4:7