“Let food be thy medicine and medicine be thy food.” Hippocrates
When I became a mom again, I didn’t picture myself stepping into the shoes of hardcore medical advocate. Nor did I think it would be such a fight to ensure my daughter gets what she needs and avoids what she does not need. For those of you who are not familiar with myself or my family and have had no introduction to my former blog sites, I can give you a quick run down.
Our little princess was born in March of 2014 with a rare chromosome abnormality called partial trisomy 9&12. So rare that she is the only one in the world with it. We were given generalized ideas of what to expect with Lily but no solidified answers. So, for the last 5 years we have been blazing a new path in the wild Amazon of medical phenomena. Lily is 5 but is said to have the developmental capacity of a 4-6 month old. In fact, just a few weeks ago she spoke the most blessed word (her only word) I had only dreamt of hearing, Mama. I cannot put into words the joy that filled my heart upon hearing her say Mama.
After numerous surgeries; many specialist visits, appointments, therapies and hours spent in frustration and tears, I feel like we are mostly where we have always been but it looks a bit different. Lily stopped eating last summer entirely. Her reflux was so violent that she lost her desire for food. We had been told by many doctors that she did not have acid reflux or GERD but after having a visit with the top reflux specialist in the world, it was finally confirmed, the very thing I had been asserting all along. We were left with no other choice but to have a j-gtube put in her stomach. There was a part of me that had felt like we had failed her, we couldn’t make the reflux stop so that eating by mouth was enjoyable. Let me tell you, we had tried everything imaginable! I cried out to God on many occasions leading up to executing the inevitable. It was either follow through with surgery or helplessly continue to watch her health decline. Of course we did it. It was terrifying but a relief at the same time. We weren’t going to go through the daily struggle anymore of whether or not she will eat her food.
Lily has a tether again. Much like she did when she was on oxygen for the first 6 months of her life. The tether looks like a leash to me; walls, constriction, limitations. I want to cut the tether. Not metaphorically but truly get rid of it. I want to cut the tether to the insurance companies who, if her stuff isn’t billed right or the deductible isn’t met decides not to ship her life giving food and other medical supplies. Do you realize how disgusting that is? Insurance companies decide who gets to live based on what you can afford or if your prescriptions are billed correctly and if not, you don’t get what you need? That isn’t medical care, it’s control and a very sick way of playing god. And I use a lowercase g because there is only One true God, not mere humans who thrive on policies and quotas rather than helping innocent lives flourish.
If I could only express adequately what special needs parents go through just to get their kids what they need I’m quite certain your jaw would hit the ground. I had all of Lily’s deliveries lined up about a month before we moved out of the Midwest. We came to California to get well. We came here for the more consistent weather; the fresh produce, my husbands cancer treatment center (I’ll be writing about this soon) the ample sunshine, the list goes on. So far, honestly, Lily seems happier here. She was effected terribly by the weather systems that moved through Wisconsin on a daily basis, the temperature and barometer swinging wildly every single day. She and I both are human barometers, we both can feel it in our heads when a new pressure system is moving in. It’s not exactly a blessing but I am glad to say, I have not had a headache since being here and I don’t have any reason to believe she has either.
Cutting the cord isn’t going to be easy but we need to regain control of Lily’s health and health plan. I am indebted to the medical staff in Milwaukee for the life saving surgeries they performed on her, she would not be here without them. Now that we have the ease of being able to feed her without the worry of whether or not she will eat what we offer her, it is time to reconfigure her food intake. We need to get her weight back up. For the last 4 months she has been on juice during the day, reaching 68mls an hour. I am hoping to transition her to bulk feeds via a syringe. I had attempted it before with little success due to continued reflux but now that her reflux has drastically improved because of the pure fresh pressed fruit juices everyday, I think it is time to try again.
This isn’t where I saw myself or my family. I never thought I would have to be a medical expert on a bunch of stuff more people have never heard of or been exposed to. I never thought I would be researching the things I have had to research. But I don’t think you can find freedom in all of this until you go through the various stages of grief and acceptance, eventually moving onward and upward. You can’t just camp there. We didn’t ask for this, nor did Lily. Lily depends on us to not camp in our sorrow and to make decisions that may not please all parties involved. I have done my share of arguing my position of why we do or don’t do certain things on Lily’s behalf and I’m not afraid to continue to do it either. I will do what is in her best interest even if no one else understands or supports it. One day when I leave this world I will give an account, that is the only thing I am concerned about. Not what this or that specialist says. I have often come to the conclusion that if it doesn’t make sense to the majority of the people around you, it is Spirit led. I’m sitting here shaking my head with a smile on my face. It’s true. If it’s impossible but you can see the outcome, it’s God. Sometimes you can’t see the outcome but you know that you are supposed to do something a certain way, go, do it. Don’t be afraid, God will guide you. Rely on Him, He is already where you are headed. THAT is comforting.
This is a long hike, we reach plateaus and resting places but we haven’t arrived yet. We just keep seeking Papa’s face every single day to give us the next move to make. I am tossing out my preconceived notions and ideas, the way I think everything should look. The vast majority of my pain has been grieving over what I thought should have been. There is freedom in taking things as they are and relinquishing those things to God to bring good from them. He has no intention to harm us or punish us for some unrepented sin. You died and were raised with Christ a brand new creation and your goodness is because of His goodness. We were meant to be free in this life, we don’t need to be enslaved to rules; fences, limitations and ideologies. All things are possible through Christ. God is Lily’s healer, Jehova Rapha! He put the medicine in the food. He had a plan for all the disease we would encounter here in our lifetimes. He foresaw everything. We just need to return to that plan. It isn’t a plan to ruin your mealtime fun and enjoyment, we just weren’t meant to eat many of the things we do eat. Our household is realigning itself with the original plan and within it, freedom. Many blessings friends, I hope this blessed someone today.