Just a quick post to let you know that the website for Isaac's Golf Tournament is up and running, thanks to our dear friend John! Check it out at http://isaacsgolftournament.org/
Also, several of you have kindly commented asking what those of you who are out of town and too far to travel for this tournament could do to support it. Spencer and I are just in awe. We have a few ideas, and I'll be posting about them once we figure out the nuts and bolts.
But for now, feel free to check out the website... registration information will be posted in the next few days!
PS-- Guess whose concert Spencer and I are going to tomorrow night? Hint: He sings the song that is the namesake of this blog!
Thursday, April 30, 2009
Just a quick post to let you know that the website for Isaac's Golf Tournament is up and running, thanks to our dear friend John! Check it out at http://isaacsgolftournament.org/
Posted at 11:32 AM
Saturday, April 25, 2009
It's hard for me to go six days without providing an update of some sort; but to be honest, this past week has been tremendously difficult, and I had trouble putting my finger on what it was and what God would have me take from it. I am still not completely sure that I know, but I felt like a new post was long overdue. But, I don't have a title for this post. That's why it's Untitled.
Over the last few days, I have just felt really restless and like there was just this huge weight on my soul. Things at work have been tremendously difficult for a whole host of reasons (thankfully, there is some comic relief in working with middle school students!), and truthfully, it has been hard being in a new school this year in light of all that has happened. And then, it all came together for me on Tuesday as to where this restlessness was stemming from.
You see, last year I interviewed for the teaching position I currently hold on April 15th. It was a Tuesday. That Friday, April 18, I went back for a second interview and was offered the position. I was 12 weeks pregnant with Isaac at this point. I decided to take some time to think and pray about the position over the weekend, but really felt like I was being lead in the direction of taking the job. It is significantly closer to where we live, and I thought it would be a wise decision to be working much closer to home for when the baby came.
That weekend, my wonderful mom took my sister and I to New York for the weekend as a belated birthday gift. It was great... we saw Wicked, ate a fabulous Italian restaurant, did some shopping, and even stood outside to wave at the cameras during the broadcasting of the Today show. The only downer was that I felt like my pregnancy symptoms had suddenly dropped. But, I put that aside, and enjoyed the weekend.
We returned home late Sunday night, and I had already taken Monday off. So, still feeling a little uneasy in the sudden drop of symptoms, I called my doctor and they were very kind to have me come in for a heartbeat check.
On my way to the appointment that Monday, I called and accepted the new teaching position and was quite excited to be cutting my commute by two thirds... that would definitely mean extra time with the baby...so I thought.
Upon arriving at the doctor's office, they took me in right away and searched for Isaac's heartbeat on the doppler. After about 10 minutes of trying, they couldn't find it. So, the whisked us back for an ultrasound. They found Isaac's heartbeat, but it was at this time that they found his extremely large cystic hygroma and omphalocele. We met with my doctor, and were immediately referred to a genetic counselor at the maternal-fetal medicine group. It was then that we were told that Isaac had a 5-10% chance of living. After meeting with the genetic counselor, we went immediately to have a CVS done. As far as I knew, life felt like it had just completely unraveled. That was April 21st of last year. No wonder it's been such a difficult week.
One of the things that has been hard lately is that for many people, everything with Isaac seems to be old news. There's a very clear divide in our lives between the people who are still willing, wanting, and able to talk about him with us, and those who are not. And so, when confronted with weeks like this, it can be hard to explain why they're difficult. I don't know if the time surrounding when we were first given Isaac's poor prognosis will always be difficult like I would expect other days, like October 7th, to be; but I do know that this year it was. It's really hard for me to wrap my head around the fact that that was already a year ago.
Today I had lunch with a friend. I call her a friend because it was also around this time last year that she and I connected. Lauren's daughter, Norrah, had been given a poor prenatal prognosis as well. I am happy to report that Norrah was born on July 1st of last year and is here with her precious mom, dad, and sister Izzy. Throughout my pregnancy with Isaac, Lauren and I would joke about he and Norrah being friends, maybe even falling in love??, and the like. I was amazed by God's goodness in providing Lauren as a warrior of prayer and source of encouragement. She had a beautiful quilt made for Isaac, sent me this really cool pregnancy t-shirt, made Isaac a CD since she knew I loved to play him music. She has such a compassionate heart, and meeting her for lunch today was like getting together with an old friend. It was refreshing to be around someone who wanted to talk about Isaac, ask to see his pictures, and who reminded me of God's faithfulness in it all. My soul needed that. And wouldn't you know it, even though I brought my camera, I forgot to take a picture! Next time...
I continue to be amazed at how, in His graciousness, the Lord has surrounded us with so many people who have supported us and upheld us... who have been our stretcher bearers and the hands and feet of Jesus to us. Some of you I have the honor of knowing in real life; others of you I only know via this wonderful tool known as the internet; and others still, I have "met" through this blog (I call you my "blog friends") and have had the privilege of meeting in real life.
I just want you to know that we are thankful for you.
This continues to be a journey, and I have full confidence in the fact that God continues to be very present, even in the days that are hard. To Him be the glory...
And stay tuned this week for more information about Isaac's Golf Tournament!!!
Posted at 5:08 PM
Sunday, April 19, 2009
This past week, Spencer and I met with the genetic counselor and the head geneticist at Children's National Medical Center to review the pathology report from my miscarriage and the death summary from the day Isaac was born. While I absolutely believe that we have been given great advice from the neonatologist who cared for Isaac (who happens to have a background in genetics) and the other genetic counselor with whom we had met, I still wanted the chance to sit down and speak with a geneticist... especially now that it's a while later and my head is slightly more clear.
The appointment went very well... both the genetic counselor and geneticist were very kind in how they discussed the situation, and were very considerate in making sure that they called Isaac by name. They were knowledgeable, and for the first time, presented options for additional genetic testing. Thus far, the other doctors either haven't recommended it, or simply said there was no other testing to do.
The folks at Children's presented two options to us: to have a microarray done, and/or have screening done for Beckwith-Wiedemann Syndrome. The microarray would look for microadditions or microdeletions on each chromosome, while the Beckwith-Wiedemann screening would look specifically at chromosome 11 to see if it presented the changes concurrent with a Beckwith-Wiedemann diagnosis. Both the genetic counselor and the geneticist do not believe that Isaac had Beckwoth-Weidemann Syndrome, and they also concur with the neonatologist's findings that there was not any genetic syndrome associated with Isaac's condition based on the findings of the CVS I had done at 12 weeks, and based on how Isaac looked (which was pretty stinkin' cute!) at birth.
Believe me... this additional screening is tempting. It's tempting because it could tell us why things happened with Isaac. It could provide an answer.
But it could not.
We talked a lot about recurrence risk. Essentially, we've been told that there's a 2-3% chance of recurrence based on what we currently know about Isaac. If the microarray testing came back positive, it could raise that percentage to about 5-6%. I know that to most people, those numbers sound small; but when your son was diagnosed with a condition that occurs in 1/10,000 live births... well, even 2% seems huge.
We also spoke with them about how this information would be helpful. We were told that it could provide a reason for what happened with Isaac, though both the geneticist and genetic counselor believed that the results for both tests would come back negative. We were also told that, if something did come back positive, it would provide information about what may need to be monitored in any future pregnancies more closely "so that we could then make decisions early enough if something was wrong." For us, there is no decision to make. Even if we were faced with the same situation again, we would give that child every chance at life.
So, Spencer and I did some talking, a lot of thinking and praying, and some more talking... and here's what we decided: not to go through with any of it.
There is such a struggle and a tension within me about it. Part of me wants the reassurance that the recurrence risk would really only be 2-3%; yet at the same time, part of me wishes that we would have an answer for what happened. Part of me wants to put my trust and my hope in the statistics, but I know that's not were hope is found.
Hope is found in Jesus.
The past few days, I've really just been feeling like God has been asking me,
"Stacy, do you trust Me?"
And I don't always know how to answer.
"Sure, God... I trust you with our finances. You've proven yourself so faithful in that way. I trust you to provide for our practical needs, because you always have. But trust you when it comes to children? I don't know..."
But I want the answer to be "YES!!" for any of those things... even my children.
The trouble is, it's a hard thing to trust the One who didn't answer the prayer for a miracle... who instead, allowed your son to die.
I know, though, that He alone is worthy of my trust...for everything. Not just the parts of my life where I have seen his faithfulness or the parts of my life that are going well. He is worthy of my trust for ALL of it.
Because of His character... because He is trustworthy, regardless of my circumstances.
So this is why we decided not to go through with any of the genetic testing. Truthfully, even if the results came back positive, it wouldn't move us into a place where we'd be uncomfortable trying again. Moreover, I want to trust God with this. I'll admit it; it scares me to pieces sometimes.
But I want to trust Him; and I have learned that often, action precedes feeling. Sometimes, a person just needs to live and act in a way, and the feeling follows. I am learning a hole new kind of trust. Truth be known, I am often so much like Thomas... needing to see, and then being willing to believe. But it is clear to me that right now, there is a choice: to trust in God's decision for Isaac because of who He is and even if I don't see the reason or understand why, or run around trying to answer the "why" question and then trusting Him. There's also the choice to trust God with His plans for our family and the possibility of future children, again because of who He is despite what He has allowed to happen, or to put all of my faith and hope in medicine and statistics about recurrence risk.
I know I talk about Angie Smith on here a lot, but I have just learned so much from her Godly example. In an interview I saw with her and her husband Todd, she spoke about the day when they found out about their daughter Audrey's diagnosis. While sitting in the ultrasound room, she said to Todd, "My Jesus is the same before we ever walked into this room."
And my Jesus is the same before we ever started down this path of grief, joined the "bereaved parents club," or lost our sweet Isaac.
And that's why I want to trust Him. It doesn't mean it's easy, and it doesn't mean that it comes without fear... but I want to trust Him in spite of those things.
Posted at 4:02 PM
Thursday, April 16, 2009
I know this post is about four days overdue. I had grand plans of writing something really long and deep on Easter morning. But the truth is, I don't know that I had much to say. I let it all sit for a few days, and still, I find myself without a lot to say.
So I will simply share a new picture with you, and some of the lyrics to the first song we sang in church on Easter morning, because truly, this is what has occupied my heart and my thoughts this Easter season...
He sent forth his word and healed them; he rescued them from the grave. Let them give thanks to the LORD for his unfailing love and his wonderful deeds for men.
Posted at 5:55 PM
Friday, April 10, 2009
There's a song my Mark Schultz that I love. Well, actually several. In fact, on our trip down to Atlanta, GA in 2002 as proud University of Maryland alumni to cheer on theTerps to victory as they won their first men's basketball National Championship, my friend Christina and I listened to his CD over and over... perhaps even for the whole 12 hour drive.
Mark Schultz sings "He Will Carry Me," the namesake of this blog. He sings "He's My Son," a song that tugged at my heart so much while I was pregnant with Isaac (and still does). But the one I was thinking of this week is called "I Have Been There." I won't cut and paste all the lyrics for you, but here is the last verse and the chorus:
An older man up on a hill
Holding flowers but he can't hold back the tears.
Oh he has come to say goodbye.
He thinks about the life she lived,
Thinks about how hard it's been to live without her
Sixty years right by his side.
And he cries, oh Lord I loved her till the end.
And he heard a gentle voice say
You'll see her once again.
I have been there
I know what sorrow's all about.
Yes I have been there,
and I'm standing with you now
I have been there,
and I came to build a bridge
Oh so this road could lead her home,
the road could lead her home
Oh I have been there,
You know I overcame the cross,
Yes I have been there
So her life would not be lost
Oh I have been there, and I came to build a bridge
So this road could lead you home
The road could lead you home
Oh I have been there
Yes I have been there
Tonight, Spencer and I will be going with some of our friends to the Good Friday service at our church. While I was out on my long run yesterday, I had a lot of time to think and pray. I really just spent a lot of time thinking about how a dimension of the cross that I never understood until now was what it must have been like for Mary. John 19:25 says, "Near the cross of Jesus stood his mother..." For the first time, I get it. I understand what it is like to watch your son die. No, Isaac wasn't the savior of the world, and no, Isaac wasn't crucified... but I watched him die. I heard the neonatologist as she told me that his heart had slowed down to only 30 beats per minute... and I heard her again when she told me that Isaac was gone. And while Isaac was so peaceful, and I am so thankful for that, it doesn't change the fact that he died.
As I continued my run, I thought of this song. I really identified with the line that says "'Oh Lord, I loved her till the end.' And he heard a gentle voice say, 'You'll see her once again.'" I did... I loved Isaac until the end. I still do. And while my heart is broken over the fact that he isn't here, because of the cross, I can be confident in the hope that I will see him again. I was also reminded of the fact that He has been there. Jesus knows what sorrow is all about. In Matthew 26:38, Jesus says that his soul was overwhelmed with sorrow to the point of death. He knows what sorrow is all about. He has been there.
I don't know what sorrows you may be facing. Maybe, like me, it's the loss of a child and for the first time this year, you, too, can identify with Mary. Maybe it's the loss of a spouse or a parent; maybe it's a poor prognosis, or something I haven't mentioned here. What I want you to know is that He has been there.The beauty in the cross is that it is where Jesus, our Savior, has built a bridge from death into life. Because of the cross, Isaac is healed and whole in Heaven... rejoicing in the presence of our God. Because of the cross, we, too, can be reconciled with God if we if choose to put our faith, or hope, and our trust in Him.
Have you? Will you?
Posted at 8:25 AM
Tuesday, April 7, 2009
Today, my heart is just heavy. It is amazing to me the way that time can seem to both race forward and stand still; but that's the way the last 6 months have been. The bottom line is this: I can't believe it has been six months since I last held my son, and quite honestly, I just want him back. I miss him so much.
This past week we made an extra trip to the cemetery to see Isaac's headstone. It isn't in place yet, but we wanted to see it anyway. Although I am happy with how it turned out, I just remember standing there while rubbing my fingers over the letters of his name and thinking, "I can't believe that this is something we ever had to think about."
Spring time is in full-swing here in Maryland, and particularly in the DC area, it can be a beautiful thing to see with all the cherry blossoms everywhere. Over the past few months I wondered if the coming of spring would help with my sadness over Isaac, and while in some ways it has, in other ways it seems to be serving as just another reminder that he isn't here. All around me, things are growing, changing, and showing evidence of life... and somehow, that seems to be reminding me lately of how Isaac is not here, growing, changing, and becoming his little self. I wish so much that I would be able to see him smile and giggle, to watch him learn to hold his head up, to put him in the swing on the playground behind our house, or take him out in a jogging stroller when I go for a run. Instead, I watch other people's little ones on the swing, and other moms go for a run with their babies in a stroller.
Yet other days, God uses the beauty of spring to just whisper to me... "I will make everything beautiful in its time." And I believe Him.
There's a song on the Chris Tomlin "Hello Love" CD that I have really come to love these past few months. It's called "I Will Rise." In particular, the bridge often brings me to tears...
And I hear the voice of many angels sing
Worthy is the lamb.
And I hear the voice of every longing heart
Worthy is the lamb.
I guess what really resonates with me in the first two lines is thinking about how Isaac is part of that beautiful chorus of voices in heaven that is praising God. In fact, whenever I hear a song about heaven, I think of him. But I guess to just have this picture of my son being in the fullness of the presence of God is just... wow.
And the second part of the bridge talking about longing hearts... at first I only thought of it in terms of longing for Jesus; but more recently, I realized that it is equally fitting to consider the hearts of people longing for something, or someone else, too and all the while still praising God in the midst of that storm. The parents longing to hold their child again the way that I long to hold Isaac... the couple who desperately wants to hold any child but struggles to even become pregnant... the person longing for a cure for their loved one... and all the while, still praising Jesus's name. There has become something quite beautiful to me about the heart and life of a person who, in their brokenness still praises God... through the questions, the uncertainty, the heartbreak, and the tears.
So I would just ask that you would pray for us today... that God would grant us His peace, that He would just be really present, and that He would allow us to see the beauty He is making from all of this.
I can't believe six months has passed since your birthday. I miss you more than words could ever express. It is so hard to not have you here with us. Daddy and I would love nothing more than to be able to still hold you, kiss your little nose, snuggle with you, and tell you how much we love you and how we're so proud of you. We're sad that we can't take you out on the playground, or go on walks with you in your stroller. We just miss you so much. But since you aren't here with us, we're thankful that you're in the most perfect place... and that there, you are healed, you are rejoicing in the presence of God, and you are safe. I love you so much, Isaac... I am so proud of you.
Posted at 8:01 AM
Sunday, April 5, 2009
Over the past couple of weeks, there have been several people who have contacted me as a result of reading this blog for whom I really feel called to pray, and I would love it if you would join me.
This first is for Amber. Her daughter, Megan Grace, has been diagnosed with a fatal form of dwarfism. She and her husband will be getting a second opinion this week from another set of doctors. Please pray for God's peace during this appointment, for wisdom for the doctors, for the grace for Amber and her husband to continue walking through so much uncertainty, and even for a miracle.
The second is for a woman who is 33 weeks pregnant with her daughter, April Rose. Baby April has been diagnosed with Trisomy 13, and is not expected to live. In addition, April's health appears to be starting to fail, as her heart rate is low. Right now, the doctors are urging this woman do deliver April so that she has a chance to meet her while she is still alive. Please pray for wisdom for this mother in the decisions she will soon have to make, for God to be just so present, and for Him to carry this mother through such a difficult time.
Finally, I would like to ask you to pray for two women who have been a huge encouragement to me on my journey.
McMama's son Stellan was diagnosed with SVT (an abnormal and extremely high heart rate) in utero, but his SVT has been acting up the past few weeks. It is a long, complicated story, but essentially Stellan has been in the PICU for weeks and the doctors haven't been able to get his SVT under control. Please pray for healing for Stellan.
On Tuesday, when we hit the 6 month mark of when Isaac was born, Angie Smith will be reaching the 1 year anniversary of the day her sweet Audrey was born and went to Heaven. Please pray for peace for Angie and her husband Todd, as well as for their three other daughters, Ellie, Abby, and Kate. Pray that it would be a sweet time of remembrance, and that God would be close to them in their brokenheartedness as they miss their sweet Audrey.
As I was thinking about praying for these families, I was reminded ot the scripture that Spencer and I memorized together to recite in the OR while Isaac was being delivered...
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm—
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.
What a promise. Thank you for joining me in praying for these families.
Posted at 8:17 PM
Saturday, April 4, 2009
This post is probably not what you're thinking it's going to be. I wish I could say that I wanted to share some deep and intimate thoughts on what life was like before losing a child, and afterwards. In some ways, I know those thoughts have been woven into some of my other posts. This post, however, has to do with something totally different.
If you have ever been pregnant, you have no doubt taken prenatal vitamins. Something terrific about prenatal vitamins is that your nails and hair grow really fast. During the course of my pregnancy with Isaac, I noticed my hair seemed to be getting longer by the week, so I decided I would grow it out for Locks of Love. It's something I have always wanted to do, and I just felt like it was another way that my time with Isaac and his little life could be used to do some good, and bring glory and honor to our Father. After all, my hair wouldn't have grown nearly as fast if I wasn't taking those prenatals, and I wouldn't have been taking the prenatals if I wasn't pregnant with him!
Maybe you see where this post is headed :)
Anyhow, I wasn't sure how long it would take to grow my hair out so that I had 10 inches to donate, and still had hair long enough to do something cute with. I still don't know how long it would have taken to grow it out to have had 10 inches. But, it took until April 4 to grow it out long enough to have 8 inches to donate to Pantene. Similar concept as Locks of Love, except that Pantene supports women with breast cancer.
So here's the before (without any styling products!!)...
If you had ever told me that one day I would be sporting a Victoria Beckham bob, I would have laughed. I am truly just not that cool :) Nevertheless, I am pretty pleased with how it turned out, and am excited to be able to put my hair towards a good cause. If you have ever considered donating your hair, I definitely encourage you to do it! It really was a lot of fun to go to the salon, have Kaci chop off my ponytail (though that was slightly unnerving!), and then proceed to give me a whole new 'do!
Posted at 1:06 PM
Thursday, April 2, 2009
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made;your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. ~ Psalm 139:13-16
Posted at 9:49 AM