8 years ago today

It was 8 years ago today that I held my first born son for the first time. For most new moms that is a time of complete joy, for me it was a little different.  The anticipation for this little life was huge, but once he was born I knew I would have to let go of him soon.  As long as he was inside of me, I had him, I could talk to him and feel him kick.  Inside of me he was perfect and alive, outside of me he was dying.  We didn't know how long he would live.  According to other anencephalic cases, the average life expectancy is 3-5 hours.  That is only if he is alive after the traumatic journey through the birth canal.  Ezekiel Jesse was born on May 9th at 9:15 pm and he was perfect.  Not perfect in the sense that he would live a full and "normal" life and die long after his parents.  Perfect in the sense that he was created in the image of his maker, set on this earth to live his life in the way God created him to do so.  His life was only 18 hours long, but the things he accomplished in that time was a miracle.  I'm not talking about the normal things a baby does, yes he did do some of those things.  He cried, he nursed, he had a dirty diaper and charmed everyone in the room.  The things unseen are the miracles.  He changed hearts, healed relationships and touched peoples lives all over the world, and continues to do so daily by the legacy he left in his short little life.  He definitely changed my life!  Before I became pregnant I was a christian, going to church, trying to live my life for Christ; but after his diagnosis, I had to rely on our Lord in a much different way.  I had to submit my wants and desires to His will and plan for my life.  At that point I didn't like His will or plan, but the only thing I could do was blindly follow Him with the assurances He has given us in his word.  Daily I would cry out to Him in song or scripture, looking for some comfort and hope.  Although the comfort wasn't immediate, I knew it would come.  From that point in my life, the Lord was my hope and His grace was sufficient. I got through through those 5 months because God is bigger than all of this.  Sometimes I look back on my pregnancy and I am surprised of how Jason and I got through it, but then I am reminded that it was all the Lord and I was just along for the ride.  When the time came closer to my delivery date it all got a lot tougher.  I definitely hadn't mastered the feelings with the pregnancy, but I had been dealing with them for 5 months, and I knew where my baby was.  I had no idea what the birth experience would be like, what Ezekiel would look like or how long we would have with him.  Scary stuff!!  The time cams for him to be born, and God did not disappoint.  He was born and was shortly surrounded by everyone who loved us and him.  We spent 1-2 hours taking turns holding him, taking pictures, singing to him, bathing him, praying and he was baptized.  We were not sure how long he would live, so all pictures were taking during the first 2 hours.  The night went on and all family started to head out, then Jason and I got some very precious time alone with him.  At about 12:30 am we thought we were going to have to say goodbye.  He had a couple seizures and stopped breathing a few times, but he pulled through.  The next morning the phone calls poured in with questions of his little life.  We were all pleasantly surprised that he was still with us, so the friends and family all came back.  At noon on the 10th he started to fail, his color started to change.  We were all able to hold him and sing him into eternity at 3:15 pm.  I never really understood a person's soul until you actually see one leave.  I held him when he came into this world and I held him when he left. Perfect bitter sweetness!  The next day was mother's day and two days later we buried him on my birthday.  The ultimate birthday gift, knowing that your child will be with you in eternity!  It was all very hard, and it still continues to be, but I have a God who is bigger than all of this!!