Thursday, September 29, 2011

Birthday Memories With Little Man Part 1

The pregnancy was so unique. I was so very sick, all the time, not gaining weight. The night before I delivered they joked and thought I looked 3-4 months pregnant.

Five minutes before Tommy was born, his fetal heart beat was not detected. I forget often that as I pushed him out, his very life was in the balance. I remember the craziness in the room. The cord was around his neck, they bagged him and he cried but then went limp. The second bagging was done twice and upon removing mask, he was breathing. His APGAR was 2/10 when born at 5 pounds 11 ounces and 18 3/4 length. Such a surprise after delivering Beth at almost 10 pounds and Ethan at 9 pounds.

The morning following brought a head ultrasounds for hydrocephalus. WHY was his head so large, body so tiny, and what was the deal with his highlighted hair. Dr's from the Children's hospital were now in and out reviewing this very unusual little boy. They required a special expanded neonatal profile- panel to rule out the many Genetic Disease we are familiar with.

The next few days and then year were a blur. So many doctor appointments, tests, visits to the local Children's hospital. Being a believer- I accepted that something was wrong and that God knew what needed to happen. At about a year the said it was a dwarfism, but could not identify which one. We should take a wait and see approach and keep living and raise him as little.

The first few years Birthday's were difficult, he was never age appropriate due to his tiny size and ability to due certain things at the "right" times.  Many a tearful, lonely Birthday nights privately. My mom raised us to make a BIG DEAL out of every Birthday. I have since improvised this to BIG FAMILY Celebrations. Birthday child picks the cake, the dinner, a friend etc. The Big parties are 5, 10, 13,16,18. This was the first Birthday I did not cry. His first real Birthday party was at 4 and he was really sick and did not participate. Last year we did a "real party" and for the first time he was in the Birthday Boy mode. This year he was all about the presents. He has caught up with the Birthday Day concept!

He proudly tells people he is growing and getting big. Our family grows with him. The uncertainty is gone. The big burden of neglect and lack of correct care is corrected. His siblings have learned to be selfless as they have had to put their needs aside to help him. The grief has lifted with help from medical professionals and healing from the Lord. Our faith is stronger and deeper. Our compassion for rare disease very real and personal now. Understanding for the complexity of medical navigating and how to advocate. We continue to trust him to heal as Tommy get's the daily treatments and we see it working where there looked like they was no hope.  Six year later we are stronger, healthier, and full of hope that he is growing in his own time.