Grocery shopping has always been a challenge for our family. Let’s just say Elizabeth lacks in the proprioception and grace departments. Her tendency to stand smack in the middle of the isles isn’t usually received well by those who are making that “quick run” to the store. There have been times when she backs up right into the canned soups or stacked fruit or looks at the meat with utter disgust due to her severe food aversion. I’m convinced that by the time we’re done shopping everyone in the store knows her name because of my constant re-directing.
Today, I left her at home with the nurse while my husband and I took care of the shopping. Sometimes these child-free trips tend to feel like a mini-vacation! As we looked around in a relaxed state I noticed a woman walking around looking for someone. Her face showed concern…. “Eddy, Eddy” she yelled. She had everyone’s attention. Some people stared while others straight up laughed at her. My special-needs-mom instinct told me she was looking for a person with special-needs. Within a few seconds she began to walk in my direction holding the hand of a young man with obvious learning disabilities. I could hear her saying “YOU NEVER DO THAT AGAIN!” As we made eye contact I told her how relieved I was she had found him. Instantly, she began to cry and tell me how hard it was taking care of Eddy. I understood what she meant. The challenges we face are endless, stretching our patience like nothing else and tapping into fears unimaginable. Her rude spectators were clueless! Instead of trying to help her, they laughed. I can’t believe how mean people can be….. I later ran into her again and she told me that Eddy had apparently wandered off trying to find a bathroom without success and decided to “go” in the middle of the store isle. The store manager had assigned an employee to follow them around while she shopped. If you remember, pray for this woman and other special needs parents who handle these difficult situations on a daily basis.
Some days are harder… On those days I hold on to God’s promise in 1 Thessalonians 5:24
Everything changed the year Elizabeth was born. I was in the middle of school when I found out I was finally pregnant! After nearly 2 years of trying I decided to move on with my life and leave “fertility” in God’s hands. I was never the studious type but much to my surprise I was getting A-s in my classes. This pregnancy soon became rocky and no longer exciting. At 4 months I developed preeclampsia. My blood pressure climbed on a daily basis, doctor and hospital visits started to become the norm. By the 6th month St. Joseph’s Hospital in Orange became my new residence. I’m not good at math but I knew if I carried Elizabeth full term I’d be spending 3 months in the hospital! My education was no longer a priority but making sure I did everything possible to keep us alive. Our little lady was born at 6 1/2 months with many medical challenges. After 17 months in the hospital we welcomed her home. George and I began to refocus and think about dreams and goals. It was then the topic of education came up but this time it was for my husband. He went on to complete nursing school and become a wonderful caring nurse. Elizabeth is now a happy and healthy 7 year old full of life and laughter. Recently I finished my education from UC Riverside and look forward to passing the necessary state exams to becone a licensed interpreter. The Mother in me longs to always be there for my daughter and simultaneously the Dreamer continues to set goals and slowly trek down the road to completing them. Are you a mom with dreams? I would encourage you to not lose sight of those dreams. Set small doable goals that might take years to accomplish but do it. God places desires in our hearts with a purpose. You’ll know if this desire is God-instilled if you can’t shake it off or forget. Pray though the journey of becoming all God wants you to be and give Him the glory for every accomplishment, great and small.
Philippians 3:14 I press toward the goal for the prize of the upward call of God in Christ Jesus.
Oxygen, trachs, suction machines, catheters, g-tubes, extensions, syringes, chucks, diapers…. If you had to choose one, which could you make do without?? I bet your answer is: NONE! When you are parenting a child with special medical needs you know how important ALL these items are. You set reminders on your phone, tell your family members to remind you, save bulky packaging and leave in a place so it’s in your face and you don’t forget to place that re-order. The next day you watch the clock closely to be sure you make that call before 5 o’clock eastern standard time because you live in the west coast…. After a brief debate with yourself as to whether you can hold off the ordering one more day you pick up the phone and call. The nice automated lady asks you to clearly state your date of birth; logic tells you she’s really asking for your child’s DOB. After carefully enunciating Maaaaay-eiiiiiighteen-two-thousaaand-niiine she doesn’t understand and instructs you to hold for further assistance. The smooth jazz music begins and you are officially in a Que. The nice lady gets back on and says, “We apologize for the delay. Please continue to hold, we will be with you shortly”. After several minutes a live person gets on the phone and immediately begins the verification process. You give your child’s name, DOB, address, phone number listed and whether or not you’ve traveled outside the United States in the last 6 months. “Are you calling to place an order?” she asks and you say “yes, I need to order more diapers”. “Okay, one moment”. Then there is dead silence. Something tells you the diapers you desperately need will not be shipping anytime soon. The representative gets back on the phone only to bear the bad news: “we will need to get authorization from your insurance company and a new prescription from your doctor”, “how long will this take?” you ask, hoping you don’t have to try to find supplies in the medical supply exchange page on Facebook or Craigslist. As the conversation ends the lady asks if there is anything else she can help me with…. Really? I’m not sure she was any help at all! I hang up and mark my calendar to follow up in a couple days. Most likely my next conversation will escalade to the point of speaking to a supervisor and in about two weeks I’ll get my diapers. Unfortunately this is how it goes every month. Some of our medical supply companies are easier to deal with than others but not by much. I feel bad for special needs parents. Not only do you deal with the “normal” challenges of having a medically sensitive child but you have to face these “providers” EVERY SINGLE MONTH! They provide much more than medical supplies, they provide stress, financial hardships and anxiety. Lord help us!