At three months old, I walked in her room and she wasn't breathing. I called 911, while I try to stimulate her. By the time they got here she was breathing and stable. They admitted her in the hospital. She had periodic breathing, she would just start breathing very shallow, and monitor the could not pick it up. She stayed on an apnea monitor for 1 year.

At 7 months old, Julianna had surgery for ear tubes, she had a mild, high frequency hearing loss. One week later she had her first seizure in the pediatric clinic. Dr. Saleme and I both saw it. He made an appointment with a neurologist, Dr. Postels. This doctor was the best thing that ever happened to Julianna. Julianna suffered another seizure before I ever saw him and she again stopped breathing. For the rest of her life we battled the seizures with different medications and even tried the ketogenic diet. She developed infantile spasms at one year old and I had to give her ACTH injections twice a day for 8 weeks. That was a long 8 weeks. The treatment was successful, but she still had multiple seizure disorder, Lennox-Gaustaut Syndrome. At the end of her first year we received the diagnosis, Chromosome Deletion of the #1 chromosome. Prognosis, not very good.

We opted to try the ketogenic diet, and it was going well. For two months we measured every bite she took. She drank whipping cream with a drop of vanilla for her milk. She ate meat mixed with butter, and she got one baby spoon of fruit for her dessert, but it was working in conjunction with phenobarbitol. Until, she developed kidney stones in both kidneys. A risk of the ketogenic diet. Julianna, never was on the high end of the statistics :) we always took her reactions with an attitude of what can we do next!. We never knew what would or wouldn't work, so we just kept on searching.

A new battle begins, with the onset of kidney stones came a g-tube for extra fluids. She still took a bottle by mouth and given extra fluids through the tube. Julianna began refluxing her milk into her lungs causing pneumonia's and upper respiratory infections on a regular basis. Finally, the doctors said nothing by mouth. That was the end of feeding my child with a bottle or spoon. I just realized now that she is gone, I should never complained about not breastfeeding, because she could take a bottle, I should never have complained that she couldn't be spoon fed, the g-tube ended all bonding between feeding a child with the joy of holding. Oral feedings were developmentally necessary and now we had to wing oral stimulation with artificial means. (We did give her some birthday cake mixed with formula before I got the no food by mouth order. She loved that chocalate cake, and she would sign for more. I have it on video. :))

Julianna had early intervention services in place at 6 weeks old. She had an infant teacher once a week, physical, occupational and speech therapy once a week. We had an audiologist to check her hearing and aids periodically and she rode around in a fancy light pink wheel chair.

Through all of this, Julianna was a peaceful and content child. She was aware of us and who we were to her. She was just starting to smile at us before she died and making the sound ma. I can remember little chuckles from time to time. Those were precious moments. I can remember the way she looked at me. It seemed like she was more accepting of her little life than I was.

She loved her bath time. and play time with certain toys. She loved to be held and kissed and hugged. She was the most kissed baby. And she was beautiful, I am not just saying that, this kid was pretty. She had long black curly hair and green eyes with a little tiny mouth and pink rosy cheeks.

She slept with me and Don in the middle. And we heard every breath she took. Every noise she made. She had to have her hand on one of us. And every morning, Don would change her and reposition her next to me and box her in with pillows and he would watch us sleep.

On February 16, Julianna became sick. I took her to the ER and she was at 50% oxygen. They put her in again with pneumonia. This time she didn't get better. She developed sepsis which is an infection throughout her whole body. We believe it originated from the kidneys. She was air flighted to the nearest picu. She must have almost died in flight, they had to work hard to save her. By the time Don and I got there, I couldn't fly with her, they had her on a ventilator. Her fever was raging and she couldn't get oxygen even on the vent. They did a blood transfusion which did get the sepsis under control. But her lungs were shot. The acute respiratory distress syndrome showed it's ugly face,. The vent was pounding my babies lungs and threatening to blow them. I watched her vitals slowing going down. She was dying. We prayed and ask God to give us strength for what we must do. We signed a living will and spent 3 hours telling her goodbye. Leslie, Julianna's godmother,and her husband, my mother and father-in-law and Don and I were there to touch her and kiss her and tell her goodbye. When the time was right I held her wrapped in a pink blanket and they took the vent out. She took 2 tiny breaths and was gone. Dying peacefully and with dignity in my arms.

The moment is frozen in my mind. It was like having her all over again. The feelings were so similar. I knew she was born again into heaven a perfect little soul. On February 18, 1999, I gave birth to a new Julianna Marie Orlando.

I was chosen to be her earthly mother, and I am honored that God picked me. He chose her for a mission here. One of love. Julianna, taught us all about unconditional love. She drew the best out in people. It was through her life, suffering and death, that God has been able to reveal himself to me. I am closer to Him than ever in my life. Some of life's lessons are hard to accept.

We watched amazing things happen after she died, miracles of God's love amongst sorrow, my friends and family were my stability. They took care of everything according to what "I" wanted, with no thought of anything else. They helped create the perfect goodbye. This was the most perfect funeral I have ever attended. It was so holy. Leslie saw the moon and stars line up as rarely seen before. Two family members dreamed of her laughing and singing and playing with our parents in heaven, people donated money for her funeral, relationships were restored that had been severed, healings of grief and guilt, food and flowers were abundant and I could see her everywhere. So happy.

I believe he does allow trials and suffering in our lives so that we can grow closer to him through imitation of Jesus' suffering. His suffering was far greater than mine ever was.

In my darkness of grief, I was reading the bible. Jesus was risen from the tomb and the women were looking for him in the darkness of the tomb. An angel clothed in brilliant white told them he is not there. But is risen. Julianna is not in the darkness of my grief. The pain and loss of her is there. She has risen and has been clothed in brilliant white. Jesus clothed her in Himself. She is in Him and He is in her. And where He is so is the Father. Sacrifice means to make Holy. Her entire life was a sacrifice, what we say is normal and take for granted was never Julianna's normal. Her normal was one of constant battling. We as a family battled with her and for her. And I believe the way we cared for her was blessed by God. I believe, even though I have many imperfections, that he was pleased with us. I believe, he didn't want her to suffer anymore, and believe he didn't want her touched by the sin of the world. He called her home to himself.

Julianna died without sin. She was an honor to me. And God did give me my miracle. It's just how one wants to look at it. It is perspective. You either believe there is a God and love him and his decisions or you don't. You either trust that all things work for the good according to the will of God or not. What is the good in losing a child? I cannot answer that for everyone, but I can start by answering it to myself. What good came of this? Julianna has led me back to Christ. She has led me into a deeper relationship with the Lord. And God is Good. There is peace where he is. There is security and love and answers. He wanted me back where I belong. Serving him. Am I more peaceful? Yes. Am I happy, yes, for the first time in a long time. Do I feel His presence, yes. Did I before Julianna was born? No. I like who I became, being her mother. I like the transformation of myself, being her mother. She left me that and I can share that love with my other three children. I will be a better mother to them, because of Julianna.

I can take what I know and share it with other parents. Those with handicapped children and those who have lost their children. I can try and be of good faith and encouraging to those who are suffering. It is written in Thessalonians, to be encouraged in our sufferings, use them to encourage and help others who are suffering. It is not in vain. All things can be good to someone, somewhere.