Help A Family In A Time Of Need
Our new goal is 2000 to help with rent food and a little gas..any and all would be appreciated
It's been just about 4 months since that nightmare of a morning on June 1st, 2017. I've been wanting to touch base with everyone and to send my deepest gratitude to Mike and the oms foundation. But I kept hesitating. I told myself I'd write some important experience when life got a little bit better. Unfortunately, I just don't know when that will be. Losing a child is the number one emotionally damaging event a human can go through. Not only does it cause monumental emotional pain it's literally responsible for brain damage. An MRI image shows how that unnatural event forever scars the brain. Justina's death was completely unexpected and not even a possibility in our repertoire of verbs associated with the long term issues Justina dealt with. During the past few years she did have more serious health issues arise. She also complained of feeling this or feeling that but the complaints never materialized into concrete issues. Sadly,her complaints were more often ignored or chalked up to hyperchondria. She was obsessed with the idea that she had serious problems and was convinced she was going to die. In the last 9 months of her life she was dx with type 2 diabetes had major weight gain despite a very restrictive diet, she had a serious case of pneumonia that required 24 hour oxygen at home and she missed 99.9% of school because of stomach issues, severe headaches and chronic pain.
The last couple days of May Justina developed her usual nasty cough and symptoms of a nasty cold. By midnight on June 1st we knew we'd be taking her in to her doc for antibiotics and pain meds for the cough. She was restless and felt scrappy. At 4am my husband told her that he was going to check on me. I too felt crummy and had slept all day and night. Justina kissed her daddy and told him she loved him. Jared told her he'd be back in 15 minutes. Justina promptly began to snore loudly. Jared and I were talking for ten minutes when Jared realized he hadn't been hearing her snore. At approximately 4:12 Jared went in to check on her. It had only been 12 or 13 minutes since they said goodnight. Justina was completely nonresponsive, wasn't breathing and we felt no pulse. I can't articulate the horror and primal scream I released. We called 911 and started CPR. She began throwing up large volunmes of water. We thought we got her back but later came to find out that her lungs were filled with fluids both from being sick and from the process of not breathing. The rescue squad arrived in less than five minutesm and they gave Justina every ounce of fight the had. They worked on her for forty minutes. Never once getting any sign of life. I won't give you the details of how that event played into our actions and thoughts.utter despair. We chose not to do an autopsy. The thought of cutting her up nearly destroyed me. From everyones report it was determined to be respitory failure. There's a fancy name but I still can't look at her death certificate. Her doctor and I talked at length. Her illness thoroughly exhausted her so when she fell asleep her lungs weren't strong enough to inflate enough. The carbon monoxide inside her went to her brain and put her into an extremely comfortable coma and experienced no struggle or pain.
How does any of this relate to her oms? I don't want to cause undue fear and panic but the years of aggressive treatment damaged her immune system and caused damage to her organs. Most notably her lungs. As she got older the more apparent the damage was. All her complaints were real. She knew something was wrong.
This is my message to you. No matter what treatmentsyou choose, don't assume nothing will happen.
Keep concise notes on treatments and side effects.
Follow your gut. Over and over you will hear that anything going on with your child is not related to treatmentkeep an ongoing journal of chronic complaints and medical issues.
Listen to your child. If something is off chances are they are. Be the squeaky wheel.
Stay proactive even when you are exhausted and feeling defeated.
Chances are in your favor that your child will grow, up just fine.
Lastly, have a financial plan in the event of the worse. My husband and I were stina's fulltime caregivers. We relied solely on her ssi. We are trying to find jobs but the market here is bleak. For the past 21 years I was Justina's personal provider. We have only 300 in income coming in right now.to add insult to our injury, most likely we'll be facing homelessness in two weeks.grief is not easy under the best of circumstances. The growing problems associated with a child's death are not always known until it's too late. I'm just so very grateful for those of you who helped. Justina was properly cremated and we had a wonderful memorial. Justina was an amazing individual. Even when we are homeless I'll be grateful for the years she was with us.
