the difference between snow and rain.

Last year was the rainiest year Knoxville has seen since the 1800s.  It rained all the time.  I talked about rain a lot, because it rained for more than a week straight after we found out Gabriel had T18.  It would rain on most of the days I had OB appointments.  Rain was a constant in our lives, and it represented how I felt really well.  2013 was a rainy year both physically and symbolically for us. 

 

Now we sit here in the year 2014.  It is a new year.  We continue to grieve for our sweet G.  We miss him.  I wish he was here – Jack would love having a brother to play with.  There are many moments where I think that Gabriel should be here with us.  But the truth of the matter is that he isn’t.  And while it is impossibly hard, we are not defeated because we have hope.  We are anchored in hope.  We trust that we will one day be reunited with our sweet G.  That we will know him well then.  And we trust that he is presently with our Father – being cradled and loved lavishly – so much more than we could ever do or imagine.  And knowing those things, thinking about those things reminds me of snow. 

 

There is nothing more pure, more new, more fresh than snow.  Watching the snow fall, watching it build and lay is a blessing for us.  To watch it fall from the sky and create beauty that is rarely seen on earth, is a special gift for us here.  Waking up in the morning to a fresh snow fall – one that is undisturbed and entirely peaceful is such a reminder to me that God makes all things new.  So with these recent snowfalls we have had, I am reminded of this about our Father.  And I am even more deeply stirred to think about how He has made our Gabriel new.  He has made him pure as snow.  And one day, He will do the same for us. 

 

It’s only fitting that this winter we have seen much more snow than usual for Knoxville.  While this time last year, all we got was rain, this year we seem to be sitting under snow.  A visual example of where we are in our lives.  In a season of awe appreciating God’s graciousness, His blessing, and His healing and new creation of our son who was so sick on this earth. 

Nikon D3200 714

january 8th.

Yesterday I shared our story when we found out Gabriel was very sick.  Today marks one year since we first heard Trisomy 18.  It was the first time we met the amazing medical staff who walked with us for the next 4+ months.  It was the day we got these precious pictures that I will always treasure. 

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one year later.

Today is January 7th.  On January 7th, 2013, our whole world changed forever.  What started out as an exciting day became the worst day of our lives.

It was a Monday and we were going that afternoon to have our big 20 week ultrasound and find out whether we were having a boy or a girl.  I worked part of the day, and Tommy had taken the day off.  I got up early and headed out the door for work right about the time Jack woke up.  Tommy got Jack ready and took him to preschool that day.  As soon as I left the house I felt sick, and as soon as I pulled into a parking spot at work I opened my car door and threw up.  [And since I was 20 weeks pregnant and I throw up hard, I also peed my pants.]  Not an awesome start to a work day, but I wasn’t going to let it get me down.  We were going to see our baby in a few hours.

I’m sure my patients didn’t appreciate any smells I brought into their rooms that day, but I got my work done and headed out about 2:45.  Tommy picked Jack up at preschool and got him down for his nap.  My brother came over to watch Jack while we went to the appointment.  So I ran home to meet Tommy, get Bradley set to watch Jack, and change clothes and brush my teeth!  Tommy and I took off for the doctor’s office.

Usually I went to the group’s office downtown at the hospital, but for this appointment I had scheduled it at their office out west since I would be working that day.  Tommy and I talked about life and about all of those exciting baby-dreaming things you talk about.  The sonographer called me back and gave me a cup for my urine sample.  While I was in the bathroom I realized that I hadn’t much prayed for this day or this appointment, and on my way out the bathroom door I felt it strongly pressed upon my heart to just say “His will be done”.  Which I’m not sure I’ve ever said before in my life.  And looking back on it, it’s pretty wild.

I headed into the ultrasound room where Tommy and the sonographer were waiting on me, and we got started.  What had started out chatty, quickly became just Tommy and I talking, and then just quiet.  There was nothing casual or exciting about her tone, and I just thought she wasn’t a friendly person.  Everything looked the same to me – just stuff I couldn’t identify.  She told us we were having a boy – that was the only thing I could identify.  And after 20 – 25 minutes, she said we were done.  Then she said she had some concerns and would show them to the doctor and he would talk to us about it.  So she took us out to the waiting room and said he would call us back.

We waited for what seemed like forever.  I remember telling Tommy that she really should have specified her level of concerns.  We were talking missing hand – cause I could totally handle that.  He laughed and agreed.  I don’t think either of us could have imagined how bad it would really be.  So we talked about mindless stuff – just talking to keep our minds from wondering what was going on.  I was so nervous.

Finally, a nurse called us back.  She got my weight and blood pressure – like any of that really mattered.  And she said the doctor would be right in.  We went to a big group where you rotate which doctors you see, so I had never seen this doctor before.  He was rattled.  Tommy and I learned last January that you never want to be the one who rattles doctors.  It doesn’t bode well.  He walked in the room and said there was no easy way to say this, but they saw problems with our baby’s brain, heart, and stomach and thought there were signs consistent with down syndrome.  I asked him how bad it was, and he said we should consider terminating.  He had a specific name for the heart defect the sonographer thought she saw, and Tommy memorized it so we could look it up.  The doctor told us we would go see the specialists and they would know more.  We went out to the front desk and the nice ladies there commented on how beautiful our baby was in the ultrasound pictures we had.  And they were still working on making our appointment.  They finished and gave us the instructions for where the Perinatal Center was and to be there at 1:30 the next day.

We walked out the door and just both started crying.  We stood by the elevators and cried for a few minutes before going down.  We got in the car and cried some more.  I remember needing Tommy to help me walk out of there.  I just leaned on him and walked and cried.  He drove us home.  I can’t remember much of what we talked about or how much we actually talked.  I just remember feeling helpless.  Our best case scenario at this point was a baby with Down Syndrome with a repairable heart defect.  And we prayed hard for that over the next 18 hours.

That night was a blur as we waited for our appointment the next day.  I remember us looking to the Bible for hope, I remember us praying for the best case scenario but also the ability to accept the worst.  And I remember the life of this sweet baby becoming so incredibly important to me that day.  We hadn’t talked about a name for him yet, so we sat down that night and picked out a name for him that would be as full of meaning as his life was of purpose.  And that was how we settled on Gabriel.

 

It’s hard for me to believe that we have now lived a full year of not a normal life.  It’s also really precious for me to look back on the time between January and May of last year when Gabriel was with us.  His life was precious and it’s so special to remember all of those moments we had with him.

 

I’ve never shared all of these details about January 7th before.  It’s a day that has changed my life forever, and it is certainly one of the worst days of my life.  But it doesn’t take away my hope.  It was the hardest day of my life up to that point, but we survived it.  God brought us through that day and all of the days to follow.  I wanted to share about that day one year ago because I know that some of you know exactly how that day feels.  I know you’ve lived your own version of it, and you have your story of your worst, shocking day to carry with you, too.  And I want you to know that you aren’t alone.  You are loved.  And I pray that you will carry that day as part of your beautiful story.  And for those who are walking this walk now, know it will get better.  It will never go away [and I’m thankful for that], but it will get better.  One day, you too, will be able to share your story while missing and remembering your loved one.  Or maybe celebrating their life and their healing.  And for those to come, know that your story is unique and precious, but that others have walked this before you and you will get through it, too.  And know that you can find help here.

 

Today we remember our sweet, precious boy, and celebrate a life that changed ours forever.  A life who shared about grace and love and blessings and God’s purpose.  We will always love and always miss our precious G.

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anger and thoughts.

I was perhaps naive to think that anger wasn’t an emotion that would come along with grief.  I think because I wasn’t angry after we found out Gabriel had Trisomy 18, that I thought I just wouldn’t be angry at all.  That wasn’t the case.  I can’t remember at what point I first realized I was angry, but it was definitely within the first few weeks after Gabriel passed away.  I remember talking with our pastor about it before Gabriel’s celebration service.  He encouraged me saying even Jesus was angry.

I don’t harbor anger in my heart and it’s not an emotion I feel a lot, but I do have moments where it rises.  The other day I got a call from someone who made some very insensitive comments.  Ironically, it was someone from church — just because someone is from the church, doesn’t mean they handle things well.  No wonder so many people get turned off to the church, but that’s another topic for another day.  I’m sure this person had no ill-intent, but their cavalier comments were very hurtful.  I found myself steaming for the next hour.  I was so angry it felt like my chest was going to explode.  And I was hurt by their sense of casualness at the loss of my child.  People can be quite thoughtless, but a lot of the time their comments are innocent enough.  Something about that conversation was more than I could handle.  Lots of tears and some deep sadness later, I let it go and moved on [aside from this post about it].

People are often careful, fearful even, of what to say to us.  Some people tip toe around us and the topic of our second child and his death.  Some face us head on with a lot of questions.  Some speak kind, encouraging words.  Some we haven’t heard from in a long time.  Some joke and laugh with us.  Everyone has a way that they think is best to talk to us, and part of our learning process has been taking in all of these different ways people handle the topic of death.  One of the big things we have learned is that people don’t want to say anything that is going to make us sadder or make us feel worse.  And my response to that is that it can’t be made sadder.  Our baby has already died, so it can’t be worse.  What does make us sad, is when our baby isn’t acknowledged.  Acknowledging his life, makes us feel better, as does remembering him.  He is our son, our family, our child forever, and we’re always thinking about him, so mentioning him to us won’t make it worse.

I have intentionally not written any posts on the topic of things people say because I don’t want to offend anyone, especially people who have been so kind to us as we have walked through this.  One day, far down the road, I want to write a post about things that are and aren’t helpful to say for people to reference when they need  to.  I have a friend who is a cancer survivor at 29.  She and I have had very different difficulties in life, but what we have in common is that we both know hard.  We’ve shared many stories about the things people say, and have said that we’ll write a book about it one day.  I see it being a funny book, one that you read and shake your head laughing through it.  People don’t mean to say the wrong things but things like sending a condolences card and putting that you’re expecting and so excited in there, is probably not the best thing to do for someone losing their baby.

I find myself struggling more these days with what to write.  When I first started this blog I wanted it to be read.  I wanted to share about nutrition with people and be a resource for nutrition in real life.  Then I got tired of that and really liked writing about Jack and our life and having a place where I could look back and see our memories recorded — kind of documented for us.  Then after we found out about Gabriel, I wanted to share our story.  Share what life was like for us as a new Trisomy 18 family.  I could care less if anyone read it.  I just wanted it to be a true story sort of blog, very real and honest place, where I just shared what was on my heart.  Since Gabriel was born it’s been harder to write, and on top of that I think I lost a little of the desire for it to be an honest account of our lives.  Partly because I feel like a Debbie Downer when I write every day about grief.  It is our life every day, but who wants to read depressing stuff every day.  So I struggle with what to write and how much to write and what to continue sharing on here.  The main thing that I keep coming back to, is that I want this blog to be a resource to someone like me in the future.  That was why I started writing about it in the first place.  I was desperate to find a family like ours in those first few days after we learned that something was wrong with our baby.  I googled and searched and looked everywhere for someone else’s words about their experience.  I needed to see that someone else had done it, that someone else had survived it.  I needed to see how their stories unfolded.  I was desperate.  And there was never a lot I could do for my baby.  I ate a whole bunch of ice cream when they said that might help me and thus him gain some weight.  But really through everything, that was all I could do for him.  So if in his memory and his honor, my words might one day help someone else get through this, then I will write about it.  If it helps someone else to not feel alone, like we felt for so long.  It’s the least I can do, and it’s all I can do.

We have found tremendous comfort through words of others.  We have heard such incredibly, kind things from people.  We are so thankful for the most wonderful people encouraging us and lifting us up.  We couldn’t have gotten through it without a lot of help and encouragement and strength along the way.  And that is what we reflect on most of the time.  But occasionally, there’s a day where something slips through the cracks, and like everyone in life, you just have to take it, deal with it, and move on.  And then get back to remembering why you’re thankful.

oh my heart.

Please take  a few minutes to watch this video.

 

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