Wednesday, November 28, 2012

The Other First Anniversary

Thomas died one year ago tonight.  November 28th, 2011 will always be the worst, most terrifying night of my life.

I have to be was hard.

It was nice, though, to have a day to plow through the memories and sadness, and to "honor my grief".  The weather was cold and dreary, which was fitting.  I went to the cemetery, looked at pictures, and looked at Thomas's box of things from the hospital.  I also read through the blog for the first time.  I enjoyed reading about the good days, but it was hard to relive the dark days.

It was a hard day, but a good day.  My tears were there, but not constant.  I am so glad that this year of firsts is over.  There are no more days to dread.  I can already tell I am feeling calmer.  November will always be a tough month, but at least I will know what to expect.

I am comforted by the fact that my worst night was Thomas's best night.....his first night in heaven.  God is so good, and I am truly amazed when I think about how much healing has occurred in my heart over the past year.  When people ask how we are doing, I can honestly say we are doing well.  God's grace is truly enough for each day.

"The minute I said 'I'm slipping, I'm falling,' your love, God, took hold and held me fast.  When I was upset and beside myself, you calmed me down and cheered me up."
Psalm 94:18-19 The Message

"This is what is compelling about the cross: its two aspects of suffering and glory.  Christ suffered in the extreme for us, and by his suffering he assured that two things will happen to our suffering: First, it will have meaning when linked through prayer to the cross.  Second, it will be over.  A better day is coming: new heavens and a new earth, new bodies, unbent, unbroken, unstained by tears.  This is our hope.  We are not meant for death and sorrow but for life and joy." A Grief Unveiled, Gregory Floyd

Wednesday, November 14, 2012

First Birthday

Thomas was born a year ago today!  It's crazy to think our sweet boy would have been one!

We have decided that even though we are sad he's not here, we are going to celebrate today.  We are going to celebrate the birth of our first child, our only son.  We are going to be grateful for that precious baby who made us parents.  His two weeks were a gift, and for that we are thankful.

While I have been anxious in anticipation of today, I have felt a peace that only God can give.   I have been overwhelmed by all of the emails, texts, cards, and thoughtful gifts.  Thank you for blessing us, and thank you for celebrating Thomas's sweet life with us.

I have been able to smile and laugh a little today too, which has been good.   And of course I have cried.  How could you tie birthday balloons to your child's gravestone without crying?   We were able to find humor in the awfulness of it all, though.  I was trying to take a picture, and TJ was trying to wrangle the balloons in the wind.  We were fussing trying to get things "just right," like we probably would at a real birthday party.   It was one of those "What on earth are we doing? Whose life is this, again?" moments.

But its ok. This is our family, and this is our story.  And we are so proud to have Thomas as a part of it!

"Our hearts ache, but we always have joy." 2 Corinthians 6:10, NLT

Thursday, November 1, 2012

(Bitter)Sweet November

How in the world has it almost been a YEAR?

Last year was focused on November as we faced Thomas's birth with excitement, hope, and fear.
This year I've been focusing on November, but with dread instead of excitement.

I think my biggest fear of November is the unknown.  I don't know how I'm going to feel.  I may be a basketcase or I may be fine.   Probably a little mix of both, fluctuating without warning. (I have a tendency to be "fragile," if you ask my husband!) I have come so far from those dark early days and weeks of grief.  I'm scared to "go there" again, because it really, really hurts.  Obviously some days will be harder than others.   So far the days leading up to a big day have been worse than the actual day, and I hope that holds true as we face the first anniversary of our two weeks with Thomas.

While I am nervous for myself  for November, I can say that I am at peace with Thomas's part in the story of our lives.  That sweet baby was the biggest blessing I have ever received in my life.  Even though I am a bit of a wreck now because of it all, it is ok.  November will always be a special month to me.

So for now, I would appreciate your prayers for me, and your patience with me.
Please pray for peace for our hearts and for continued healing.
Please be patient with me as we face this hard time of year.  I may be a wreck.  I may not return calls or emails in a timely manner.  I may update the blog, and I may not.  I'll probably be a bad friend.  I may want to talk about it, and I may not.  I'm not making any plans for November because the thought of anything extra (besides work) makes me feel overwhelmed and panicky. I'm going to need time to be by myself.

I love this passage from Lament for a Son by Nicholas Wolterstorff:

"'Put your hand into my wounds,' said the risen Jesus to Thomas, 'and you will know who I am.' The wounds of Christ are his identity. They tell us who he is. He did not lose them. They went down into the grave with him and they came up with him- visible, tangible, palpable.  Rising did not remove them.  He, who broke the bonds of death kept his wounds.

To believe in Christ's rising from the grave is to accept it as a sign of our own rising from our graves.  If for each of us it was our destiny to be obliterated, and for all of us together it was our destiny to fade away without a trace, then not Christ's rising but my dear son's early dying would be the logo of our fate.

Slowly I begin to see that there is something more as well.  To believe in Christ's rising and death's dying is also to live with the power and the challenge to rise up now from all our dark graves of suffering love.  If sympathy for the world's wounds is not enlarged by our anguish, if love for those around us is not expanded, if gratitude for what is good does not flame up, if insight is not deepened, if commitment to what is important is not strengthened, if aching for a new day is not intensified, if hope is weakened and faith diminished, if from the experience of death comes nothing good, then death has won.  Then death, be proud.

So I shall struggle to live the reality of Christ's rising and death's dying.  In my living, my son's dying will not be the last word.  But as I rise up, I bear the wounds of his death.  My rising does not remove them. They mark me. If you want to know who I am, put your hand in."

Thank you all for grieving with me, and for not being afraid to "put your hands in."

Tuesday, August 21, 2012

The Last Big Thing

I arrived at the cemetery yesterday to a nice surprise- Thomas's gravestone had been set!  Picking out the stone was the last big thing on the list of dreadful tasks we have had to do over the past nine months.  I'm so relieved to have it done!

Initially I could barely handle going to the cemetery, much less pick out a gravestone.  It all seemed too cold, too hard, and too final.  Now the cemetery is part of my routine, and I go 2-3 times a week.  I keep flowers by Thomas's grave, so I usually go visit and water them.   Over the past few weeks my perspective has shifted.  Instead of being upset about picking out a gravestone, I was upset that he didn't have one yet!  This whole grieving process is such a roller coaster!

I think I'm as pleased as I ever could be with a gravestone belonging to my baby.  I love it.  Our family stone will be ready in the next few months, and I'm looking forward to that, too.

The verse we chose for Thomas's epitaph is "I, the Lord, made you, and I will not forget you." Isaiah 44:21 (NLT).  The Lord had a hand in every minute of Thomas's life, just as He does in ours.

Wednesday, July 4, 2012

The 5th of July

This time last year I was enjoying a wonderfully easy pregnancy.  We were so excited about Thomas! We were working on his nursery and dreaming about his future.

I remember July 5th vividly.....down to what I was wearing. The workmen had come to hang a fan in the nursery that morning.  TJ came home from work to pick me up so we could ride together to our 20 week ultrasound.  My Mom was going to meet us there....she had really wanted to see Thomas in an ultrasound so I had invited her along.   I remember TJ's comment that he was nervous before we left.  I blew it off...being nervous hadn't crossed my mind.  This was unusual since I'm the worrier of the relationship, but I was just excited to see more pictures of our baby.

We went in for our ultrasound, and things were progressing as usual, initially.  I started to notice a discrepancy between his size and my dates, however.  Then I noticed the tech spending a long time on his heart.  I asked what was wrong, and she said she was having trouble finding a four-chamber view of his heart.  She called for my doctor, and I started to panic.  We were given our preliminary diagnosis of Hypoplastic Left Heart Syndrome, and were scheduled to see the perinatologist (high risk OB) later that day.

I think back and wonder how I could have been so naive thinking that everything would be fine on that ultrasound!   I guess since everyone around me has healthy babies, I just thought I would too. I thought at least there would have been signs with my pregnancy that would have been a clue that something was so seriously wrong. 

Our playful talks about colleges, sports, and ziplines in the backyard turned into serious and tearful talks about hospitals, surgeries, and survival.  I remember July 5th so clearly because that was when I had to give up so many dreams for Thomas.  Instead of thinking about his high school graduation,  I just wanted to carry him to term. Instead of college, I just wanted him to survive surgery.  Instead of weddings and grandchildren, I just wanted to bring him home. 

At our appointment with the perinatologist that afternoon on July 5th, we were asked for the first of four times if we wanted to terminate the pregnancy.   They told us it would be a hard would be expensive.....and he might die anyway.  We knew that an abortion was never an option for us... we had to give him a chance. 

I love the way Sarah Williams addresses this in Shaming of the Strong: "We felt God the Father speak a message to our hearts as clearly as if he had been talking with us in person. 'Here is a sick and dying child. Will you love it for me and care for it until it dies?"  We were prepared to love Thomas and care for him until he died.....whether that happened in 2 weeks, 2 months, or 80 years.

After Thomas died, someone asked me "Was it worth it? Was it worth it since you only had him for two weeks?"  After I overcame my initial horror at being asked such a question, I immediately answered "yes!"  It would have been worth it if we'd only had him for two hours!

 My heart breaks for all of the new parents receiving scary diagnoses at their ultrasounds.  I wish I could hug them and tell them it will be ok, and that it will be worth all of the heartache and hardship.  These babies are so precious, and so deserving of love.   As hard as it is to lose a child, I doubt any women who have chosen to keep their babies in similar circumstances would say they regret making that choice. 

In my heart the 4th of July has been overshadowed by the 5th of July.  But that's ok.....he was worth it!

 "For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11 NLT

As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."  John 9:1-3 NIV

Sunday, June 17, 2012

First Father's Day

Happy Father's Day TJ!
Thanks for being such a wonderful father to Thomas!!!

"The Lord is like a father to his children, tender and compassionate to those who fear him."
(Psalm 103:13 NLT)

Tuesday, June 5, 2012

I Don't Understand

A friend of mine lost her baby girl in 2011 after a four month battle with some serious health issues, including congenital heart disease.   They just welcomed a new baby, Keira, into the world ten weeks ago.   She is so precious!  It hasn't been an easy ten weeks, however, but so far none of her specialists have been able to figure out what is going on., they learned what is causing Keira's feeding problems.  She has pulmonary vein stenosis and pulmonary hypertension.  To use my friend's words: "Both are extremely rare diseases, both are progressive, both "fatal". No medicine or surgery has been known to help."

Needless to say, my heart is broken for them.  And yes, I'm angry.

I don't understand this, but we are not promised understanding.  I don't think its fair, but we are not promised fair.   We are not promised long, healthy, easy lives here on earth, but we are promised lives without "death or sorrow or crying or pain" in heaven (Rev 21:4).

To quote our wonderful grief counselor, Gina Roes:"Planet Earth is hard."  It is situations like this that make me long for heaven even more.

Please join me in praying for baby Keira and her family.  I'm praying for a miracle, and I'm praying for healing for her heart and lungs. I'm praying for wisdom for her doctors.  I'm praying for peace for her parents, and for strength for their marriage as they face this nightmare AGAIN.  I'm praying for her big brother as he tries to understand what on earth is going on here.  And I'm praying that God will be glorified through Keira's life, and through the faithfulness of her parents.

"I have refined you, but not as silver is refined.  Rather, I have refined you in the furnace of suffering."  Isaiah 48:10 NLT

Wednesday, May 2, 2012

How can a good God allow suffering?

My sister's church in Rhode Island has been doing a sermon series dealing with tough questions.  Last weekend they addressed a question that we have all asked at some point: "How can a good God allow suffering?"  My sister's pastor, Jerry Dusenberry,  asked if he could use Thomas's story as part of this sermon, as the death of an innocent baby is a pretty obvious example of seemingly senseless suffering.  He had followed along on our journey with Thomas, and had prayed for his healing.  Of course we told him we would be honored! My sister read several of our blog posts, and several excerpts were combined into the video below which was played at the end of the sermon.  The sermon is excellent, and it talks about how suffering is a result of sin (not a result of my personal sin, but "big picture sin" affecting me on a very personal level).  Our suffering isn't senseless, and God uses all of it for His greater purpose.  We may not see it at the time, but our suffering is part of a story much larger than our own.

"We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!" 1 Corinthians 13:12 (The Message)

Tuesday, March 20, 2012

We're still here!

I can't believe its been over a month since I've written anything.  Time has flown by. There are a few reasons for my lack of writing:
1) I don't really like to write
2) We've been busy
3) Our lives are not very exciting

I didn't think anyone would want to hear about how I wake up, go to work, and then catch up on notes each day until its time to go to bed.  I would also be horrified if anyone knew that we were very content to stay home last weekend and watch the Ninja Warrior marathon on tv (don't judge until you've seen it- its addicting!)  We have done a few fun things- we spent a weekend in Hilton Head with some of our best friends from Greenville, and we have had some good visits with family and friends.  I am  thankful for springtime- the blooming flowers, longer days, and beautiful weather have been good for my heart.
Sad moments creep up on us (and they always will), but we are able to smile, laugh, and get through each day.  

I read this quote the other day, and I love it:

"Christ is building His kingdom with earth's broken things.  Men want only the strong, the successful, the victorious, the unbroken, in building their kingdoms; but God is the God of the unsuccessful, of those who have failed.  Heaven is filling with earth's broken lives, and there is no bruised reed that Christ cannot take and restore to glorious blessedness and beauty.  He can take the life crushed by pain or sorrow and make it into a harp whose music shall be all praise.  He can lift earth's saddest failure up to heaven's glory." (JR Miller in Streams in the Desert)

I had to read it a few times initially, and I have read it a few times a day since.  
My heart is still broken, and that little piece belonging to Thomas will always be missing.  God is using our hurt, our tears, and Thomas's broken little body. He is using Thomas's two weeks to help people see their blessings, be better parents, and trust His plan in good and bad times.  He is healing our hearts, and He is making our story of sorrow and pain a beautiful one.

"Accept the way God does things, for who can straighten what he has made crooked?" (Ecclesiastes 7:13 NLT)

"He has made everything beautiful in its time.  He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." (Ecclesiastes 3:11 TNIV)

Saturday, February 11, 2012


If I had to sum up how I've been feeling over the past two weeks, it would be "overwhelmed."

It is definitely winter at work even though it has been 75 degrees outside.  I enjoy it, but it means late nights and busy weekends.   As crazy as it can be, I have always handled it pretty well in the past.  After all, it is just a season. Now, in the context of grieving Thomas, some days it just seems to be too much.  Life in general is busy and I find it much more exhausting than ever before.  I haven't been able to get back into a routine or rhythm. 

It has left precious little quiet time just for me.  In the first few weeks after Thomas died, I was afraid to be alone and still.  That was when my mind floated back to images I didn't want to remember, what-if's, and what-now's.  Now I crave that quiet, alone time.  It gives me a chance to remember, grieve, and heal. It gives me a chance to pray and draw closer to Jesus, the source of strength and healing.  I have found that I need that time every day.   My tears are always just under the surface.  If I miss that time they just build up, and I find myself feeling frenzied and overwhelmed.

 I am learning that scheduling my "me time" is more important than most of the household tasks I have hanging over my head.  The ironing pile isn't going anywhere,  the mail pile on the counter can wait, and my husband isn't starving thanks to the generous stash of casseroles in our freezer.

Our grief is still fresh.  Like winter, I know that this is a season too.   I am often reminded how I felt on December 4th.....everything seems just like it was before Thomas, only nothing is the same.   I'm still figuring out my new normal. I don't just crave that quiet time, I need it to restore my soul.  

I love this verse from In the Secret of His Presence by Sandra McCracken, written by Ellen Goreh:

"Only this I know:  I tell Him
All my doubts, my griefs, and fears;
Oh, how patiently He listens!
And my sorrowed soul He cheers."

Here's the whole song:

 "The LORD will guide you continually, giving you water when you are dry and restoring your strength.  You will be like a well-watered garden, like an ever-flowing spring."(Isaiah 58:11 NLT)

Sunday, January 29, 2012

The Faces of CHD

Congenital Heart Disease (CHD) Awareness week is February 7-14, 2012.
Statistics show that heart defects are the #1 birth defect in the United States, and about 1% of babies are affected.  These defects are also the leading cause of infant death from birth defects.

Since I realized I would be a "heart mom" in July, it seems like other affected families have come out of nowhere to share their stories and offer support.  Congenital heart disease affects so many families, and shouldn't be taken for granted.

In order to help raise awareness, Ruth has started a board on Pinterest dedicated to the "Faces of CHD."  Pinterest is a very neat, very addicting website that allows you to "pin" things that interest you on the web.  You can find everything from recipes, craft projects, home decorating ideas, and just about anything else.  Sharing the stories of families who have been affected by CHD will help bring awareness to many people who might not realize how common and serious this really is.   Thanks for your support!

Saturday, January 28, 2012

Two Months Later

Dear Thomas,

It is hard to believe that I held your little hand for the last time two months ago tonight.  It was also the first time I got to bathe you, dress you, and hold you without wires and tubes.

I have never been so scared in my life as I was that night, Thomas.  I couldn't believe it was happening.  The doctors and nurses working on you were able to fix just about anything....but they couldn't fix you.  They couldn't bring you back.

Looking back on that night, I now understand why.  God gave you to us for fourteen days.  Those days were written before you were born.  It was your time to go, despite the doctors and nurses who worked so hard to save you.  It seems like it may have been easier  if we'd known we would only have you for two weeks.  It was painful to lose you, and to lose the hopes and dreams we had for you.

It is so hard to think about that last night, Thomas. I usually can't think or talk about it without crying.  I have to remind myself that you don't remember it like I do.  The most traumatic night of my life was your first night in heaven.  It was a beautiful night for you, and I am so thankful for that.

You are part of a bigger story, Thomas.  God has redeemed your two weeks, your broken body, your life-cut-short.  He is also redeeming our own hurt, sorrow, and tears.  He is showing us over and over again that He is good, and faithful, and true to his word.  

Losing you has put our broken world into perspective for me.   This isn't how God intended it to be....babies aren't supposed to die.   We are anxiously waiting for the day when things will be made right again.

"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever."   (Revelation 21:4 NLT)

"I have told you all this so that you may have peace in me.  Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world." (John 16:33 NLT)

Sunday, January 15, 2012

Tough Week

This past week has been a hard one for me.
I've been more sad than usual.  My heart has been heavy, and I've felt that knot in my stomach that I had the whole time Thomas was in the hospital.

Thomas would have been two months old yesterday.  He would be smiling, cooing, and laughing by now, and I'm sad I won't get to see that.  I think each of these little "birthdays" are going to be hard for me.    All of the two month olds are coming in for their checkups now, too.  While I love seeing them, it is hard as well.  As time goes by it will get easier, and this little group of babies born around Thomas's birthday will always be special to me. 

Being back at work has been good for me, for the most part.  I love my job, and I have missed my patients and coworkers. It has also been a good distraction, as our house just seems too quiet. Most people know about Thomas, and they have been sweet about giving me a hug or telling me they've been thinking about me. Of course there have been a few awkward encounters where people didn't know and have excitedly shouted out "Congratulations!" when they saw me.  I usually cry as I tell them about him, and they cry with me.  I am grateful for every acknowledgement of my baby's life.   I appreciate that they care enough to congratulate me and care enough to cry with me. 

Being back at work has also been draining, though.  I'm out of the habit of long days, and am slowly getting used to it again.  While I love talking about Thomas,  I have to do it about thirty times a day.  Its often hard to keep myself together, keep my head clear,  and focus on work.  I've realized I need to block out time for myself at night and on the weekends to just let myself be sad. 

Yesterday and today I went out to the cemetery and just sat and cried and prayed. The weather was beautiful, and the cemetery was so peaceful.   The sun was shining on the water, the birds were singing, and the wind was blowing through the giant oaks covered with Spanish moss. 

I miss my little buddy.

"You keep track of all my sorrows.  You have collected all my tears in your bottle.  You have recorded each one in your book. " Psalm 56:8

Sunday, January 8, 2012

Thoughts on 2011

2011 has changed our family forever.
We had Thomas for 41 weeks last year. I carried him for 39 weeks, and we were able to love on him for fourteen days. We experienced the highest of highs and the lowest of lows through our sweet baby, and we will never be the same.

I have always heard "Blessed are those who mourn, for they will be comforted" (Matthew 5:4 NIV), but I have never really understood what it meant. Now I think I am starting to get it.

The Message version of the same verse says this: "You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you."

According to the cliff notes in my Life Application Bible, "'Blessed' means more than happiness...'blessed' means the experience of hope and joy, independent of outward circumstances."

I wish things had happened differently with Thomas. I wish more than anything that he was still here. Losing Thomas hurts, and I will miss him every day for the rest of my life.
While these awful circumstances could have left us bitter, miserable, and ruined.....they haven't.

We are grateful to have been given that time with Thomas. Through God's grace we have been able to experience hope and joy in the midst of our crisis.  The Lord has bound my heart to His like never before over the past six months. We are already noticing some healing in our hearts, and we are hopeful that 2012 will bring more of that. We are looking forward to what the new year holds.

"Come near to God and he will come near to you."(James 4:8 NIV)