I'm the the mommy of three beautiful children, of which only one is alive today. I married in 1987, moved to California and on January 15, 1988 I gave birth to the most beautiful four pound eleven ounce baby boy (Alexander) anyone had ever seen. Moments after his birth NICU nurses rushed our baby to the NICU where Alex was to live the first few months of his life. Later my husband Mel wheeled me into the NICU to really see our baby for the first time. There he was laying on a small table hooked up to all these strange machine by tubes and wires, a frightening sight for a first time mom and dad. Later we learned Alex was on the table because he was to sick to go into a incubator, and that Alex was not expected to live long. We were told on a daily basis all the new things they found wrong with Alex and they were numerous. When Alex was eight days old he was trachrd at two in the morning. At two weeks he got a gt tube . By the time Alex was one month old we had learned all about seizures, tube feedings, how to medicate, suctioning and exchanging his trach and CPR, later we learned about brovacks. ( A crash course in medical school)
When Alex was three months old he came home for ten days, and we learned the true meaning of therror. We used CPR seventy, yes 70 times, before we were back in the hospital for five more mobths.
In this time we learned Alex had oral, facial, digital sysdrome type 17, Mohr, Mejewski sysdrome and no one knew much about it and dandy walker and dwarfism.
Alex came home again with $5000. worth of meds, all kinds of machines, eight hours nursing a night (So we could sleep, because Alex didn't always breathe) and two parents who were very scared.
Alex had an adverage of six to twenty seizures a day and anywhere from ten and up black attecks. We had no family and the few friends we did have soon disapeared because people were scared of Alex so everything fell onto our sholders withn no relief or help.
This went one for three years and it quickly became our way of life. We were told we had an one in four chance everytime we got pregant of having a very sick child so we decided not to have anymore but Christmas of 89 we found out we were expecting in August 90. We went thruogh eight months of being scared and all kinds of testing and on August 28, 1990 we had a beautiful healthy boy we named Andrew after Alex's peditrican. We spent Andrew's first christmas in the hospital with Alex and Alex's third birthday in the hospital. After three years of doctors telling us Alex was going to die, we no longer believed it. We thought Alex would prove them all wrong forever, like he had over the past three years, but he didn't . On Febuaury 17, 1991 Alex died and left us shocked.
Alex's death changed everything, there were no longer daily visits of medical personal, pouring medicans, alarms going off at all hours of the night and it became quite in our home, a sound we had not heard in three years. We could'nt remenber what life was like before Alex or what to do if we wern't taking care of Alex. It was to much of a shock after three years of loving our Alex to life, love was suddenly not enough, he was gone, really gone, why?
I'm mad as all hell some people are abusing their beautiful children and others are throwing them away like trash. All I ever wanted to be was a mommie and here I was . I could'nt say "why me ?", because who else would I give this place up to? I only wish like all parents that I had had more time with Alex. I miss him soooooo muchhhhhhh!
On August 18,1992 I gave birth again to a beautiful baby girl Kelly, she weighed two pounds one ounce and lived for twenty-four minutes Sometimes you must cram a life time of love into only minutes.
I have had the pleasure of giving birth three time to beautiful, not always healthy children and the honor of being trusted by God to love three exceptional children even if two were for a very short time, one who we are privilaged to raise and watch grow. How lucky we are. Andrew fills our home with love, laughter and all the sounds of a happy healthy child. Andrew will be six soon and he like all children is in a hurry to grow up, and we get to help him and watch him grow.
"We are permitted to grieve
because we have been privilaged to love.
To escape grief at the cost of
never having loved is too dear a price to pay."
Thank you for giving us a place to share our son and daughter with others. We miss our children but we have gained so much in having them and loving them. thanks to all who maded it all possible for us to have that chance and all the wonderful nurses and doctors at Kaiser in Sacramento who helped and made all possible.
Julia & Mel Miller
You can send email to Julia at [email protected]