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.

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 road....it 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

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)

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. 

Finally....today, 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

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)

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)

Overwhelmed

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)