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

Scattered thoughts...

I am realizing that I want to do something related to little Brody during all of my down time at this point.  I either want to read more about his condition, talk to someone about him, or write to him or about him.   So here are my scattered thoughts!

As far as Jason and I are concerned, Brody's short life has already begun.  Because we want to cherish every moment we have with him, starting now, we have been singing to him, taking him places like the zoo (3 times), for runs around the lake and to Madagascar Live, and we have been talking to Addison about his life.  This last one has been quite difficult, but we have some good resources to help us figure out the best way to share all of this with a concrete thinking 2 year old.  We have been keeping it simple at this point, "baby Brody is in Mommy's tummy and is going to be a visitor with us for a very short time."  She seems okay with this, but definitely wants to talk about it more than we expected.  We know we will have a lot more explaining to do as she made an interesting comment last week.  A very sweet friend gave us some baby blankets for Brody.  Addison was talking to Nana later that day and told her that "these are for baby Brody when he comes home."  I pray that she is right.

Some people wonder why we would carry little Brody to full term.  We never thought of this as a choice.  Brody is very much alive, active, and comfortable right now, we do not feel that it is up to us to decide when his time is up.  We also know that God is perfectly capable of doing whatever He wants with Brody, and we will put our trust in Him to make those decisions.  In addition, we believe that Brody's short life will be purposeful...it has already been so for us.


Most importantly today, I want to be sure to thank our amazing friends and family for their emails, cards, calls, meals, flowers, and especially prayers.  Jason and I feel a peace that neither of us has ever experienced before in this way.  We feel strong, and are able to honestly say that we know Brody will be a blessing in our lives and God is totally in control of this situation.  We also know that this peace is not coming from us, but rather from our Father who is answering your prayers and ours every day.  Please continue to pray that God takes care of Brody as He sees fit, and that Jason and I are able to have strength and hope each day as we walk through this journey.  Pray that we are able to make the best decisions for Brody, and that these amazing resources continue to flow into our life.

Lindsey

"The word of the LORD came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart..." - Jeremiah 1:4-5 

Today it was cloudy outside.

Dear Brody,

The last several days have been very sunny.  Sometimes I think God provides the sun to remind us that He is everywhere.  Often when it is sunny, I wake up determined to make it a good day, even if everything is not so good.  I have done that this past week.   I have tried so hard to think about everything potentially positive in this difficult situation.  Brody, you have been dancing away in my tummy, reminding me all day long that you are so alive and well right now!  Your dad and I have been talking about you and how every second of your short life will be filled with love...I promise you will be held in our arms for all of it!  I have been looking at the ultrasound pictures, in awe of how perfect and precious you are...you even look like you are praying in one picture:)  Your sister has been talking about which stuffed animals she is going to share with you, even mentioning a few of her favorites, but also suggesting that we "go to store and buy new ones."  And most of all, I have been trying to focus on the TRUTH that you will not have to spend a lifetime looking for Jesus, but rather you will go right from our loving arms into the eternal loving arms of our Savior.  We are so thankful for this, Brody.

But, today it is very cloudy outside.  I am sure that even if it was sunny today, I would still be feeling all of these things.  Brody, I sooooo want you to be with us every day for as long as I live.  I want you to wake me up every 2-3 hours all night long for a whole year, like you sister did.  I want to help you learn to roll over, crawl, eat big kid food, walk and say new words.  I want to take you places and show you things, and I want you to remember the way we love you more than anything else.  I want to teach you about our Heavenly Father, who so perfectly created you, and is always there for you, even when mom and dad are not.  I want you to follow your dad around the house doing silly projects that don't have to get done, they are just fun to do together.  I want you to play, laugh, sing, run, swim, throw, spill things, mess up, get back up, love, learn, and live.  I want you to live, Brody.  I do not want to lose you so soon.  I hope you know how much we already love you.

On this cloudy day, the sun peeking through those clouds reminds us why having you here with us is not what God has in mind for you.  People have been praying for us since we learned about your fatal condition.  Prayers are being answered, Brody, and God is providing us with peace.  We know you will be fine, we know you will be better than fine.  I have not been able to think of anything positive today, but instead I have been focused on what I want.  But I will end the day with this...I have to.  Ultimately what I want is for you to be okay, Brody.  And deep down in my heart, I know you will be just that.  I have no doubt that our God is taking good care of you.

Love, Mom

"...I have made you and I will carry you; I will sustain you and I will rescue you."
Isaiah 46:4

Week 1: “Is this a dream…?”

It was Wednesday March 30^th, the day we had been waiting for since we found out we were expecting our 2^nd child. This day had been on my mind for weeks, it was the day we were going to find out if our house would be dominated by girls…or…boys. Lindsey and I had planned to meet at the doctor’s office. We originally were going to have our daughter Addison stay with a friend, however, last minute we thought it would be exciting for her to see her brother or sister for the first time.

I left the office early that morning to get to the doctor’s office. Lindsey had not arrived yet, so I sat in my car thinking about how incredible it was going to be having another baby in the house. Every guy always dreams of having a son, however, our daughter Addison stole my heart from the day she was born. It was a tossup, but either way I was going to be the luckiest Dad in the world.

When Lindsey and Addison arrived we all ran into the clinic excited as ever. We sat down with the ultra-sound tech first to listen to the heart beat and determine what we had been waiting for so long. The ultra-sound tech started her scanning and started smiling. We asked her if she could determine the sex, and she said yes with certainty… it was a boy! Our faces lit up with excitement. I was overwhelmed with happiness, the son every Father dreams for. At that moment, I was the happiest man alive. That very same moment would be that last minute we would live what we thought was “our normal”. Within 5 minutes of our ultra-sound, our physician entered our room. She said there were complications, concerns in the images she saw that pointed out a possible genetic disorder. All I can remember from that meeting was the words “down syndrome”.

My wife and I left that morning with tears in our eyes. We instantly thought of our future, what would things look like? How would we do this? For two days we waited to hear back from the genetics specialist. On Friday April 1^st, we received a call. We anticipated the worst, or what we thought was the worst. The specialist started by saying “it is not good”. The test indicated a rare genetic disorder call Trisomy 13. Statistics state that this disorder affects 1 in 10,000 pregnancies. The specialist went on with all the details of our son’s disorder. All I heard was “this is not compatible with life”. As I took notes, my wife sat on the couch looking at me for answers. It wasn’t until after I finished the call that I explained to my wife what our new “normal” would entail. She instantly dropped to her knees crying. The pain, sadness, and anger set in. Why us? What did we do? Could we have done something different? How could God let this happen? So many questions raced through my mind. Not only do I need to face this battle internally, I need to be a source of strength for my family.  At that moment I prayed to God to give me the strength to be strong, to think rationally in order to support my wife. That prayer was answered is so many ways. God has this incredible way of providing peace of mind. I was still so confused, however, in that moment I knew God had a plan.

The next day I was down stairs getting ready for Lindsey’s parent to come over. I started thinking about our son, whom we named Brody. I drifted off thinking about how I was going to teach him how to play hockey, golf, and all the things Dad’s teach their sons. At that moment I lost it. Just the day before I was confident that God had a plan. Now I questioned what this plan was? I kept saying to God that this was not fair. Brody is so innocent, why not me?

The next few days passed and as the reality of our son’s short life set in, I built up more anger. As a Husband to Lindsey I have always taken pride in solving life’s problems. There was always a way to approach a problem and solve it. I was so mad that this problem could not be fixed. There was nothing I could do to change our reality. It was then when I realized this was completely out of my hands. I prayed to God more in those first few days than I prayed in my whole life. 

A day or two later we welcomed a visit from our Pastor, Rich. He wanted to talk with Lindsey and I about how we were managing our emotions. He affirmed that being broken, confused, and filled with anger were normal. He went on to explain that God does not wish these horrible things on us. That he hurts in the same way as we are hurting. He recommended that I circle up a group of guy friends to lean on during the hard times. As much as this makes sense, I am a guy… I don’t like talking about my feelings, especially with other guys.  I understand the importance of this; however, I think it is going to be sometime before I am able to open up.

Message to Brody:

My son, this week has been the hardest 7 days of my life. Your Mom and I could not be more excited to welcome you into this world. We understand that God has bigger plans for you than here on earth. This breaks our heart; however, we know that God has incredible things for you. A client of mine summed it up perfect this past week; he told me that you were so lucky. That some people spend a lifetime looking for Jesus, and you get to meet him the day you are born. As hard as it is, I know that he is right. I love you so much Brody! I promise you, I will cherish every day as you grow inside your Mommy.

With all my love, Dad

20 Week Ultrasound Pics

No matter what, you are a blessing.

Dear Brody,

We love you!  Your dad and I have not been able to stop thinking about you.  We do not expect to officially meet you until August, but we feel so close to you already.  Last Wednesday, March 30th, we went in for our 20 week ultrasound, and were anxious to see you and find out if you were a boy or a girl.  Just a minute or so into the ultrasound, the technician said, "you have a little boy!"  I immediately looked at your dad whose face had lit up.  He would not admit it, but he secretly was hoping you were a little boy and although he adores your sister, Addison, as much as humanly possible, he has had some things other than dolls and tutu's planned for you:)  The ultrasound went as expected, so after it was complete we just waited for our doctor to come in and review the findings.  Dr. Jeffers came in to the room and quickly sat down.  All we heard was, "unfortunately we found some abnormalities on the ultrasound indicating a genetic disorder, possibly Down Syndrome."  We were shocked and overwhelmed as we thought of what that meant for you.

We spent the next 24 hours praying and talking with each other about this new reality.  We already were so in love with you and were having a hard time imagining you dealing with some of the challenges that lie ahead.  Your grandparents were all over at our house immediately, as they are just as excited to meet you as we are and were of course concerned.  We knew we were going to have to do some waiting, because we had a second level ultrasound planned for the next day to confirm the findings.  We spent the rest of the night talking about you, Brody.  We talked about how no parent wants to watch their child to walk an uphill battle their whole life, but we talked and prayed about God equipping us to raise you into a loving, carefree, and confident kid who would be able to contribute to this world in ways that your dad and I never could.  Of course we were grieving about the concerns regarding your health, but we knew God was all over it.

On Thursday we went to the Maternal Fetal Medicine specialists to learn more about you and your condition.  First we sat down with a genetic counselor, Cheri, who we later realized was the first "angel on earth" God would provide to help us work through this difficult time.  We told Cheri that we were expecting the specialists to confirm that you had Down Syndrome, and that possibly there were abnormalities with your little heart, brain and the omphalecele on your abdominal wall.  She gently explained to us that the ultrasound report from the previous day indicated the likelihood of one of three possible genetic disorders: down syndrome, trisomy 18 and trisomy 13.  We did not know much about these other conditions, but knew that they were more severe than what we had been processing for the past 24 hours.  Cheri kindly offered to explain to us each condition, but your dad and I both knew that we wanted to know what you were dealing with before we learned about it.  My heart was breaking, Brody.  This is when I knew that there was a chance that I would not be able to spend much, if any, time with you. 

The ultrasound tech said that she would explain everything to us in as much detail as we wanted.  (We wanted to know every detail about you.)  She started with your brain, taking several measurements, many of which she said were normal.  She explained to us that your cerebellum looked slightly smaller than they would expect, but that they see that in healthy babies sometimes.  She looked at your face and told us how beautiful you are.  We learned that your head was down, which was different from the day before...we smiled for a second, thinking about how you just may be as wiggly as your dad. She worked down to your heart, which was beating at 130 bpm.  We were anxious to know of the condition of your heart.  The tech said, "it is small, I don't see any specific defects, but it is small."  She went through each and every part of your body, not mentioning many other concerns, and also noting that the omphalecele is much smaller than most of them that she has seen.  I guess that was good news.

When the ultrasound was complete, the doctor came in to do an amniocentesis.  We decided that it was important to find out the specifics regarding your diagnosis so that we could prepare appropriately, both medically and emotionally.  Your dad and I felt like we were already making decisions for you that seemed more intense and significant that we ever imagined making in your lifetime.  This too, made me love you even more.

The next 24 hours were extremely difficult, as we waited for our genetic counselor to call back with the genetic testing results.  I lied awake in my bed through much of the night experiencing guilt.  Even though they had explained to us that these are all genetic disorders, I was obsessed with what I had done wrong during the last 20 weeks of pregnancy that did this to you.  I spent hours on the internet investigating the various causes and the prognosis for these different conditions.  Thankfully, your sweet grandparents stayed over night at our house that night so that they could get up with Addison and take her to the zoo while we waited for this dreaded phone call.

At about 1:00 pm, they called to tell us that you had full Trisomy 13, a condition that is "incompatible with life".  I lost it as I thought about how we were going to lose you.  I don't want to lose you, Brody.  I do not want to bring you into this world with just enough time to say goodbye.  I just clung to your dad and could not let go.

Love, Mom

"But I am trusting you, O Lord, saying, "You are my God!  My future is in your hands."
- Psalms 31:14-15


"Don't be afraid, for I am with you.  Do not be dismayed, for I am your God.  I will strengthen you.  I will help you.  I will uphold you with my victorious hand."
- Isaiah 41:10