I love the saying, “Life doesn’t have to be perfect to be beautiful”. I couldn’t agree with this more! Outsiders looking in may think we are a strange little family because our daily MO is far from being perfect or normal but our home runs like a well-oiled bike. We trek down the path of life just fine, bumps and all, we get from point A to point B every single day. Its Christmas time and our sweet Elizabeth has learned to turn on the Christmas tree and fiber optic snowman all on her own. It’s become her holiday contribution to our family and she’s quite proud of the skill she’s acquired this year. We now call her The Light Monitor. The Christmas tree gets turned on first thing in the morning and at times she will randomly get up to turn it off. We don’t understand the logic behind this but we let her be. For her, this has been a pretty ‘perfect’ Christmas so far.
Let me tell you about the worst-best Christmas we had. It was December 2009. We were in the ICU with a very sick little baby. She had just gotten her trach and g-tube. The pain from the fresh wounds meant she had to be heavily medicated so she could sleep and not feel the pain from the surgical holes in her neck and stomach. These medical interventions were vital to her survival and growth but knowing that didn’t ease the hurt we felt watching Elizabeth pass thru excruciating pain. It still hurts to remember. Day after day, we spent every possible moment in the hospital. Every night we slept on the cold hard floor of the spacious ICU room, woke up early to shower at the Ronald McDonald House and headed to work. This was my routine. George would stay with Elizabeth during the day and go to work in the evening until the day he got fired. Often times he had to call in “sick” or show up late for obvious reasons. His work wasn’t as forgiving as mine was. It was a rough time for us and losing a job complicated things more. I was scared. We still had to pay rent on an apartment we didn’t live in, utilities, car payments, insurance, etc. All this on just one income. Then God intervened! Shortly after that, he got a new and better job and on Christmas day we were showered by strangers with money, gifts and encouraging visits. One evening we decided to take a little break and rest a bit at the Ronald McDonald House. As we opened the door to our room we saw a pile of Christmas presents! To this day, we don’t know who these were from. They were anonymous donations made to RMH families. I’m brought to tears remembering the generosity of strangers during this trying time.
Then, on Christmas morning a roar of motorcycles was heard from every floor of the Children’s Hospital of Orange County. A group of Harley riders came to visit the children at the hospital, bringing even more gifts. Overwhelming gratitude is what we felt during Christmas of ’09.
As you can see, this Christmas wasn’t perfect but it was beautiful! People’s generosity impacted our lives greatly and have inspired us to pay it forward. If you’re experiencing a rough Christmas season, please remember that things do get better. There is beauty in difficulty. You will look back one day only to remember Gods goodness in your life and how much He’s helped you grow.
Hope you all have a very Merry Christmas!
Love, The Fernandez Trio
Can you imagine not being able to communicate your wants, hopes, fears and most importantly, your needs? This is the life my Elizabeth lives every-single-day. Her autism is all over the spectrum but when it comes to speech, she is on the “severe” side. This impediment brings my heart painful frustration and yet stretches me to figure out ways to communicate with her. As her mom, I want to know how her day was at school. Is she hungry? Does she want a new toy? Does something hurt? Elizabeth can’t tell me ANYTHING! This makes her a perfect target for someone who would want to take advantage or hurt her. Two years ago there was a malicious girl in her class who was caught kicking Elizabeth under the table. The instructional aid witnessed the incident and put an end to it; but I have to wonder, how many other times had this happened without anyone ever finding out? Unless there’s blood or obvious signs of injury, no one would understand why she cries, including myself.
So, why am I so compelled to write this post? Because I’m calling all parents of special needs children to be awakened, be a loud voice for their defenseless little ones and to make it clear to the schools, community, our family and everyone who interacts with our child that they are not alone. Each child is surrounded by a protective army called Special Needs Parents. We must look out for each other’s children. It takes a village to raise a child but it takes an army to raise a special needs child. This week we had another incident with our daughter that brought us immense worry, so much that a police investigation had to take place. My husband and I try to live peaceable lives but when it comes to protecting Elizabeth, we will overturn the tables with anger.
In closing, I encourage you to pray for your children and pray with them. Our daughter can’t speak but she will hold our hands, close her eyes and even end with an “abuh” (amen). Does she fully understand what’s going on? We don’t know, but the Bible says in 1 Peter 5:7: Casting all your cares on Him, for He cares for you. He cares for our special needs children and wants to hear their silent prayers too but we must help lead them to Jesus. Remember the paralytic man who wanted to be healed by Jesus so badly that he had the community lower him on a bed through the rooftop of the house where Jesus was? You can read the whole account in Mark 2:1-12. This man had an army surrounding him, ready to help even to the point of going to this extreme.
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
Friends, this is so true! Early intervention is key!
When Elizabeth was first diagnosed, I didn’t want to believe it nor accept it – because I didn’t see it. She was same baby girl I had always known. I knew what autism was because I’d been suspicious for some time and had done research on my own. Some signs were obvious while others weren’t. I bled on the inside, hoping for a mis-diagnosis but quickly more signs surfaced such as hiding under the table, refusing to speak, and repetitive leg motions. I couldn’t even begin to deny something was wrong. Very wrong. Her entourage grew, we were surrounded by all kinds of therapists and teachers who helped us understand her needs and challenges. They were opportunities to grow, both for her and us. Her early intervention started at about 2 1/2 years old.
I thank the Lord for his provisions, He always knows what we need before we even see it!
In the U.S., Halloween is just the beginning of the end of year holidays that seem to set off the ripple effect of celebrations and parties. As you drive thru neighborhoods you see decorations going up and temporary costume stores popping up everywhere. When our daughter started school we debated on whether or not to dress her up, knowing that finding a costume would be almost impossible. Most princess or super hero costumes are made of frilly polyester and almost all of Elizabeth’s clothes are 100% cotton or a cotton blend, anything different might entail a wrestling match trying to dress her. She knows the difference too! When I introduce a new article of clothing I will tactfully show it to her allowing her feel the fabric, once she is comfortable, I attempt to put it on her. I say attempt because she will usually push it away at least once before allowing me to dress her. Countless times I’ve read that scratchy and silky fabrics feel like ants crawling all over an autistic’s skin so I keep this in mind when shopping, staying away from the “oh-so-cute” costumes available on the market. We got lucky the first year with a soft doable lady bug costume found by ‘chance’ at an outlet store, on our way home from day-tripping. The 2nd year wasn’t so easy. After looking high and low for ANYTHING that might work I settled on a homemade costume made of black clothing and yellow duct tape creating “bumble bee” stripes. I’m sure many thought we couldn’t afford to buy the beautiful Elsa or Ariel costumes that seemed to be so popular that year but looking back I’m proud of my little bumble bee buzzing along in her schools costume parade.
Elizabeth is non-verbal and exclusively fed via g-tube making trick-or-treating senseless for her. We discovered one year that if you don’t say “trick or treat” you don’t get candy so we found ourselves explaining at every candy stop why she wasn’t saying anything. Once folks understood what was happening, they would give her an unusually large amount of candy! As you can imagine, the night ended with a mound of candy Elizabeth couldn’t even eat! My lucky co-workers enjoyed her candy for days on end.
October 31 is just around the corner and I still don’t have a plan on what she will be…. I’m sure something will come to me as I desperately search Pinterest for ideas. I’ve made up my mind to take a sewing class so I can create a suitable costume for my little princess next week.
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!