the Odd Kouple

I wrote the following about a week ago, but decided to wait to post it.  To be honest, I wasn’t sure it would be a good idea.  I tried to write an honest post about what the grief is like.  After I wrote it, I thought, “if I post this people will think I’m losing it.”  So I sat on it for a while.

I kept thinking about the post and wondering if other people felt hesitant to articulate what their grief was like to friends and family.  It does seem to be a taboo subject in our world and I think that it might be even more taboo to talk about the grief when it is a child who has died.  People who are concerned about the grieving person are afraid they will make it worse by talking about it; and grieving people think they will make others uncomfortable if they confess how sad they really feel.

So, I have decided to post what I have written.  If for no other reason than to share my experience with those of you who carry your own grief.  I figure that there are a lot of people out there who have lost people that they loved very much and my hope is that what I have written below will resonate with your soul.

Please know that Daniel and I both are walking this journey the best way we know how.  Most of the time, we are dealing really well and it seems that when one of us needs a little break from reality, the other can step up and be a support.  We are so grateful for all of the loving support we have received and we know that we could not be managing as well as we are without it.

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Confession:  Grief is hard.  Anyone who has walked its road will attest to this fact.  No day is the same.  Sometimes I wake up feeling fine and other days I wake up and immediately want to go back to sleep so I don’t have to face the day.  Some days I go almost the whole day without crying, but on most days, I loose count of how many times I cry.

Grief is emotional.  I feel sad most of the time, but occasionally I will feel angry.   When I feel angry, I am frustrated because it doesn’t feel like it has anywhere to go. I’m not angry at anyone in particular, just the circumstances.  Then, I realize that I’m to tired to be angry, and it kind of dissolves away and gives way to more sadness…absolutely overwhelming and heavy sadness.

Grief is physical. More than angry, even more than sad, I feel tired.  I have been a little surprised by how incredibly exhausted I have been.  When I am able to sleep, it is a deep, deep sleep.  I am always grateful for sleep and I never feel like I get enough of it.  tired.  My body is tired and sometimes it aches because it is so tired.  Each day, I have a list of things that I want to get done and not yet have I finished everything on my list in a day.  Usually, I get one thing done and that is all I have the energy for.  Some days, I get none of it done, because it is all I can do to give Natalie the attention she needs.  She is my top priority each day.

Grief is mental.  I can be in the middle of an activity and completely forget what I was doing.  If someone asks me if a prefer this or that, I become paralyzed to answer.  Every decision, even the little ones, like what I’m going to wear or eat, feel overwhelmingly difficult to make.   Sometimes it just feels like the world is moving way to fast and that it is too loud.  Any stimulation is to much right now.  When the world feels like too much, I seem to check out because I cannot take it all in right now.

Everything about it is hard.  And most of the time, I wish it would just stop.

But I can’t.  I cannot skip it, I cannot go around it or over it or under it.  All I can do is walk through it.  Everyone says that eventually it does get easier; that one day, I will be able to dress myself without feeling overwhelmed; that one day, I will be able to make be able to decide what to feed my daughter without feeling like I am moving a mountain; that one day, I will have the energy to accomplish all the things I want to accomplish in a day; that one day, I will not walk around all day wondering what it was that I was doing; that one day, I will feel mostly like myself again.

But the ache…no one has said that one day, it won’t ache.  It seems I get to keep that part the rest of my life.  I think that one day, it will ease a little, but I now live on the after side of loosing my child.  There was this part of my life that was before we lost Aiden.  And now there is this part of my life that is after.  So much of the after is different from the before.  But, it’s not all bad.  Well, right now, most of it is really bad…most of it hurts more than I can describe.  But, I do think that there are things that will become more positive as time goes on.  The only reason I think this is because I have known other people who have lost children and they have had good things emerge out of the tragedy that it is.  I imagine that these people would give all of the good back, if they got to get their children back; I know I would.  But that is not how life works.  For now, we have to figure out how to live this life that we have been given.  We have to figure out how to move forward…or for me right now, not fall backwards.  Right now, I’ll take holding steady.  I’ll work on moving forward a little later.

So, this is grief.  It is hard and messy and frustrating and I’d rather not do it.  But here we are doing the best we can with it, and trying to find the good in it.

Tags: Aiden, Aiden John, grief, Natalie

The birth of Aiden John was one of the most beautiful moments of my (Nikki’s) life.  Though he was very small, he took up an awfully big space in our hearts and in our lives.  And though he never took a breath on this earth, he will forever be a part of the fabric of our lives.  Little Aiden was absolutely beautiful and I will never forget the first moment I saw him and got to hold him.  He had 10 little fingers and 10 little toes.  He had his father’s forehead and his sister’s perfect little mouth.  He also had nearly as much hair as she did when she was born.

We were so grateful to the medical staff at Central Georgia Medical Center.  They took really good care of us and allowed our family time to meet baby Aiden.  My favorite moments were watching Natalie with him.  We let her have complete control over how close she got to him.  At first, she just wanted to look at him while sitting in her Papi’s lap.  Then she touched the blanket that he was wrapped in and then gave him a little tap on his nose.  Then all of a sudden she wanted to hold him.  It made my heart feel so warm to see her being so gentle and loving to her little brother.  We had a rag that was there to dab a little Aiden’s nose because he was having a little bit of a nose bleed.  As he was passed from one family member to another, the rag would easily be forgotten and fall to the floor.  Every time, Natalie would pick up the rag, hand it to the person holding Aiden, and say, “That’s Aiden’s!” She was so proud to help take care of him.  And I was proud of the way she loved him.  I also felt so sad that I would not get to see how she would be a big sister to him.  That is something that I will always wish I could have seen.

After the family left the hospital, we hung around to wait on the funeral home to come and get Aiden.  Letting him go that night was the most difficult thing I have ever had to do.  There was no way I could prepare for it and to be honest I thought I might literally break in two as I did so.  I don’t really know how we managed to do the things that we had to do that night—all I do know is that I didn’t do it by myself.  I know this because I wasn’t capable of doing it by myself.  Daniel and I both had someone carrying us through it, making it possible for us to take each step as we had to take.

And that is how the last five days have been.  For me, they have been a blur, but I do know that there have been all kinds of people around, taking care and loving my family and me.  I hope to write down some more of the things that have happened over the last several days.  At first we didn’t think we would see Aiden again, but we were able to see him a couple more times and that was a wonderful gift.  I will write more about all of it soon.

Though we continue to hurt deeply, we find ourselves so grateful for all of those who have helped to make this all a little more bearable.  We are grateful that God has given us friends and family who can so tangibly show us God’s love and compassion.  It is these gifts that have and continue to carry us through.

Thank you for your prayers and words of comfort.

Daniel, Nikki, and Natalie

Tags: Aiden, edward's syndrome, Family, Natalie, trisomy 18

Many people have checked in and asked how we are doing.  We are so grateful for all of your concern.  The best answer is that it depends on the moment in which you ask.  Over all, Daniel and I are dealing very well.  We have so much support with each other and around us, that we are able to walk this journey somehow.   In all honesty, there are moments when we both wonder if we can really bear this.  There are moments I think, “I had no idea I could hurt this much.”  We both find ourselves pretty exhausted by all of the emotions and grief we are experiencing.

At the same time, we keep putting one foot in front of the other and walking through.  We love our time with Natalie and she continues to bring so much joy into our lives.  She is such a healing presence for both of us and we continue to be delighted to watch her grow and learn.  She is quickly becoming a very independent little thing and wants to do it all herself.

Most recently, I have made the transition to stay home with Natalie and it is going really smoothly.  We are still looking for a rhythm, but I doubt it will come before the holidays are over.

Thank you again for walking this journey with us.  We are grateful for the companionship.

Thank you also to those of you who have reached out to us as parents who have lost infants.  We have struggled to have the energy to respond, but look forward to connecting with you when we feel we are able.  Right now, we are focusing on things closer to home, but hope you will still be there when we do need to talk.

Holding on tightly,

Nikki, Daniel, Natalie, and Aiden

Tags: Aiden, edward's syndrome, Natalie, trisomy 18

Today Nikki and I come to you with very heavy hearts. On June 19^th, we were so excited to announce that we were pregnant with little baby Peanut. On September 11^th we went in for our final ultrasound to find out what gender Peanut would be. We were excited to find out he was going to be a boy! However, that news came with a “but” when we saw the doctor. He explained to us that they found what is called a Choroid Plexus Cyst, which by itself is of no consequence, but if other abnormalities are found then there would be a greater concern for what is called Trisomy 18 (T18) or Edwards Syndrome.

We were then referred to another physician to complete a Level II Ultrasound that would help determine whether Peanut had these other abnormalities. What was found broke our hearts. Four other abnormalities were found.

There is a hole in his heart. Many babies have this problem and the hole typically closes up before birth. However, in his case, the hole is larger than average causing concern. The other issue that came up with the heart was whether the upper ventricles that send blood out were working properly. The doctor could not say definitively whether or not this was actually happening as the heart is currently the size of an English pea, but he seems to think that there is a problem. This can be confirmed around week 28 by a pediatric cardiologist—though we are hoping to find one that will see us earlier.

The second concern that was found was the clinched fists of the baby. An average baby either has open hands or has fingers side-by-side when they close their fists. Peanut had both his hands clinched with fingers overlapping. These clinched fists are a classic sign of T18.

The third item was Peanut’s stomach. This may or may not be a false positive. In order to see the stomach on an ultrasound it has to have fluids in it. At the time of our appointment, they could not find the stomach. So, either, the baby had not swallowed any fluids and there is nothing to worry about or the stomach is not attached to the esophagus. The latter would be more indicative of T18.

The final abnormality found was that Peanut had Club Feet. This is a birth defect where his feet are turned in and at an angle they are not supposed to be. By itself this defect can be treated with modern medicine. However, tied in with the other three abnormalities, can be another indication of T18.

What does this all mean? Well, to sum it all up, we were told that all these indications combined with the original cyst that was found indicates that there is a 75% chance that Peanut has T18. The doctor advised that with T18 there is a 100% fatality rate. Many babies with T18 will die in the womb or shortly after birth. A very small few will live longer, but most don’t make it to the first year. There are some instances of children living into childhood, but this is very rare and these children are incredibly medically fragile.

If it turns out not to be T18, we can treat many of the defects and still have a wonderful life with the baby. We have the option to take a test called an Amniocentesis that would tell us without a doubt whether it is T18 or not, but that test comes with a risk of its own.

We hate to deliver such sad news. We just ask for your prayers as we move forward. Needless to say, we are incredibly broken hearted by this news. Pray that little Peanut falls in that 25% range of not having T18. Pray for Nikki as she carries this pregnancy and for me as I support her through it. Pray for strength for us as we make difficult decisions over the next few days, weeks and months. Pray for our strength and clarity of mind. Pray for our families as they continue to walk with us through these difficult times.

If you are interested in reading updates about our journey, we will be posting this and future updates to our blog, www.theoddkouple.com. We will likely not update every day, but we will update every time we receive new information. Our next scheduled appointment is in a couple of weeks.

With heavy, but hopeful hearts,

Daniel and Nikki

Some of you know the story of my niece, Catie, and others of you don’t.

For those of you who do not, Catie was one of the bravest little girls I have ever known. She was diagnosed with a brain cancer on her first birthday and she battled that awful disease for 3 1/2 years through several surgeries, rounds of chemo, and hospitalizations. We were all devastated when she lost her battle in January of 2007.

Catie was a wonderful little girl and she taught me many things. One thing she taught me and my need-for-control self, was how to relax and go with the flow. She was always up for whatever came her way and she handled it with grace and gentleness. She taught me about self-care. She did this by always asking for what she needed. Whether it was a hug from her mama or a Chick-Fil-A biscuit, she knew how to ask for it.

However, more than anything, Catie shared with me the face of God, because that is what she was. In her little life, Catie was the face of God for me and taught me more about that mystery to which I pray than seminary and Sunday School every could have. I am still reaping the lesson that she taught me and I am grateful for her life.

One other thing she taught me about was hope; and one thing I have a hope for is that some day we will have a cure for childhood cancer so that no more children have to suffer this awful disease. If you would like to play your part in making this a reality, please go to www.catiescureclassic.com, and learn about the golf tournament my sister, Jenny and her husband, Tre’ are putting on. Consider giving a small amount, sponsoring a hole, or playing on a team.

To read more about the tournament, you can also click here and read Jenny’s blog.

Tags: Cancer, Catie, Family

Well…here I am as the class clown of the two of us.  I have previously entered this blogosphere with my other blog site latinogeek.com where I have fallen behind on keeping up with my posts, obviously.  Well…that’s why I figured I would join forces with Nikki so she would force me to be accountable to keep up with my writing.  But I envision converting latinogeek.com into more of a techie site and using this site as a site to share our adventures as a family.

I once spoke with someone that described me as an adventure leader.  They defined it as one who loved sharing the adventures and experiences of live with others.  I loved this description of me the more I reflected on it.  I also realize that with that I also wanted to use those experiences to not only share, but enhance the lives of others.  Whether it be through laughter, insight or even rare occasions tears…or maybe with cool Jedi mind control, it didn’t matter to me, I want to try to use this venue as a way to bring my worlds together.  The cubicle, that is my workspace, and my other life, that is travel and adventure.

As a little background, I was born and raised in Guatemala, but jaws tend to drop when clear Spanish language is spoken from a freckled, casper colored, blonde man.  I love to walk into a Mexican restaurant and ask for tortillas de maiz vs. the usual flour tortillas and see the reactions that I get.  (Or request things that aren’t on the menu that I know they have.)  Moving on…moving on, by the time I was 22 I had traveled to 17 different countries from Africa, to South America, to Asia to Alabama.  So, to say the least I have seen a thing or too.

I know there are plenty of folks out there that have seen more than me and can blow me out of the water.  I love hearing their stories.  It is part of my community.  I do not try to throw these numbers out to brag, but to hopefully bring you in to my world a little.  This is my vision for this blog.  Hopefully this will give me a chance to be the Adventure Leader for all our readers.  Enjoy, laugh, cry, disagree with us…or me.  Either way, enjoy yourself and enjoy our family.  Regardless of our differences, we are fun.  And seriously!  Look at our pictures!  How cute is our daughter!  Could we not have done a better job making that baby?!  Welcome to our family.

D. Hardeman

Well, I’ve gone and done it.  I have entered the blogging community.  Actually, Daniel and I have entered it together.  We started out thinking it would be fun to find a way to share with friends and family about our our upcoming trip to Southeast Asia.  After we talked about it a bit, we decided we would start a blog an make it about our adventures as a couple and as a family.  Our upcoming trip is just the kick off event. 

So, about the name. Daniel and I brainstormed for a long time about what we would name our blog.  Most of the other names we came up with were pretty lame, but when we landed on The Odd Kouple, we knew we had it right.  If you’re more curious about the name click here or go to our About Page. 

Daniel and I will both be contributing writings to this site and we will do our very best to keep it interesting.  No doubt, we will write about our wonderful daughter, Natalie, and all the ways she keeps us entertained.  We will also write about the things we love and the things we are passionate about. We will also write about things that amuse us as we travel through this life together.  

We welcome your thoughts and comments.  Let us know if there are things you want us to blog about.  We will do our best.