Rejoice

The nurse just called. It is day four of school, and there are already problems with who will be responsible for feeding my child. The truth is no one wants to carve time out of her busy schedule to do it, even though nobody would dare speak those words – definitely not to me. After calling my husband and discussing the problem/potential solutions, I immediately opened up the Bible app on my phone. I needed a word. No. I NEED a word. Present tense. Being a parent of a special needs child is HARD! Prayer carries me through.  I knelt down, speechless. The Holy Spirit interceded for me (Romans 8:26).  The devotional which appeared on the screen of my app rang true. “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus (1 Thessalonians 5:16-18)

The negativity rising in me dissipated. The drastic measures I wanted to take  like jumping in the car and demanding an emergency ARD meeting, or calling my son’s classroom, or contacting every friend with special needs kids and bemoaning the injustices of life disappeared. My mind was blank. Seriously. Blank. That NEVER happens. In all my 32 years, I don’t think my mind has been blank once, until today.

I couldn’t think of anything good so, the Lord cleared my mind. Maybe He was insisting He has this. Possibly He wanted me to give thanks that my son attends school, before I stormed out the door, called the original ARD members who promised me it wouldn’t be a problem to feed him liars, and withdrew him without looking back. Perhaps He wanted me to stop thinking about what a complete waste of my time this is and how everything has to be so darn difficult for me. He wanted me to WAIT in SILENCE for his blessings to reveal themselves.

Romans 8:28 declares, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” In the matter of my son not getting the accommodations he was promised, I am already a victor, not a defeated opponent. With that knowledge, I don’t need clenched fists and attitude flaring. The gentle spirit God has already planted in me should reign (Galatians 5:22-23). I will document what is happening, so I can be prepared to advocate for my child, but GOD is the ultimate advocate for my son. He created him, and he has sustained him. He’s got his back, and the protector of all things is a much better bodyguard than wimpy ol’ me.

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Stone 4 – Milestone

“Teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

Nothing calls for celebration like staring at the face of tragedy and surviving. When my son fought for his life during his first few months on this earth, I begged GOD to allow me to raise him. Hezekiah never leaves my mind, because he pleaded for more time, and GOD granted him fifteen years (Isaiah 38:1-5). I’d be lying if I didn’t admit to wondering when the sand will fill the bottom of the hourglass of our time together. How many years did the Lord grant me when he answered my prayer in the affirmative? When he saw it fit to grab my child from the throws of death, what did he see in our future? No human knows. That leaves me to enjoy each moment or regret the ones I waste.

Yesterday we celebrated my son’s third birthday. He has accomplished more in his short life than many will in decades. His determination and his joyous attitude have changed people’s lives. We rejoice because we have spent over a thousand days with our son when the doctors warned us he may not make it through the night. While we boast every day of his accomplishments, his birthday holds special meaning. We see the beauty in delighting in another day here on earth.

Today Sammy attended preschool. He sported a uniform and carried a backpack. He’s only a little boy, but yet, like his namesake in the Bible, he was conceived to do great things for the Lord. That school will be touched because of Samuel’s presence. and it is imperative the staff know we’ve only made it this far because God’s will ordained it.

As you battle the demons of today, remember God is with you. Our time here is brief. Don’t squander it complaining and grumbling. The Father in heaven saw us worthy of raising our children in order that He receives the glory. Let’s live out today as if there is no tomorrow.

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Priorities

I’ve kept it together lately. On Sunday we asked for prayer for Sammy as he starts school. The whole congregation bombarded me after service to ask if I planned to sit in Sammy’s classroom every day. I laughed. “I can’t do that, and I don’t want to.” I want my child to experience what every other child experiences – time without his parent close by. Until now that has proved impractical. I’ve been forced to shelter him to keep him out of the hospital, off oxygen, and away from incessant doctors’ visits.

I smiled at those brothers and sisters who have watched Sammy grow up, most of them who understand very little of my life, and I replied, “I’m not scared. I’m excited that he can go to school. We’ve never been in a place where we could consider sending him to daycare nonetheless preschool. It hasn’t hit me yet.”

Today after Meet the Teacher, it slapped me in the face. I haven’t allowed myself to sob like this type of milestone requires. (Who knows, maybe I will while writing this post.) People will care for him who don’t know his history. They are not like the NICU nurses who saw him skin and bones, intubated, gasping to breathe despite the ventilator’s assistance. They weren’t broken by the image of him, tongue hanging out of his mouth like a deceased dog, due to the heavy sedation needed to endure open heart surgery at two months old. They don’t know his struggle. On Monday morning I drop my miracle child off with teachers who have no clue what God has done for him. They look at him and see a semi-healthy child and don’t realize what it takes to make that look easy and how in an instant it can all change.

I laid out all the potential problems at school to a girlfriend, and she set me straight. “Choose your priority. What is it you are most concerned about? Let the staff know that if nothing else gets done besides that one thing, you’ll be happy.” I already know my one thing. I want my son to eat and stay healthy. For some parents who don’t know our challenges, those are low expectations. The protocol Sammy follows for feeding takes three pages to explain. It took us 30 days in inpatient care at Baylor Hospital* to learn the method that got Sammy gaining weight and off tube feeds. For the past year, we have religiously followed protocol, to the point of restricting family activities so Sammy can have optimal feeding and eating conditions. Was it worth it for our son to lose his dependency on tube feeds? YES! Now he is very much dependent on the protocol, but for us, it’s better than the tube, which caused massive vomiting several times daily.

Keeping him out of the hospital and gaining weight defines healthy in our world. He can miss school once a week due to illness, but as long as he stays home and continues packing on the pounds, we’re okay with it. By hibernating from November to March, he has remained out of the hospital for over a year. This flu season, a gaggle of preschoolers will pass on their germs to him. Handwashing (which some people do not take seriously) and sanitizing reduce the probability of him becoming ill. It’s hard to keep up with all that in the classroom, but those are my non-negotiables. I will sanitize the ball pit in the motor lab. I will provide Clorox wipes for his teacher. I will even feed him if no one is willing to be trained to follow his scientifically-proven protocol.

Learning his abcs? Counting 1-2-3? Honestly, let the parents of healthy kids prioritize that! Right now, we’re just trying to keep our heads above water. Tell me, do these priorities seem realistic to you?

*Children’s Health obtained Our Children’s House (formerly operated by Baylor Hospital) in September 2015. The feeding program is still intact.

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Stone 3 – Those who loved me

John 13:35 “By this all men will know that you are my disciples, if you have love for one another.”

Some people say you discover who your friends are when difficult situations arise. When my son came three months early, people stood in line to show me love. A coworker left notes with a care package in the pumping room. Cards flooded our mailbox, each one with money inside. Those who came to the hospital brought food or gift cards in addition to their love and affection. In the darkest time of my life, Christ sent people to encourage us. Thirteen dollars a day for parking and gas for a 45-mile roundtrip to the hospital daily is a financial burden, but I never worried about money, because each time we needed it, the Lord brought it to us by the hands of family, friends, members of the church, and anonymous donations.

During Samuel’s hospital stay, I took off every Wednesday. A brother (in the faith) worked at the adjacent hospital, and I asked if I could carpool with him and his family once a week to save on parking expenditures. That ride blessed me profusely. Although I was not sitting in a church building once a week, I received the word because he and his wife ministered to us. They visited Samuel in the NICU and made sure they checked on us religiously. Now we consider them adoptive grandparents to Sammy.

The milk bank is a place where mothers pump milk for their sick children. The staff there became like family. Their presence, listening ears, and smiling faces nurtured my soul. Pumping every two to three hours exhausted me, but they cheered me on promising I’d keep my supply up if I stayed consistent. I saw them more than I saw Sammy’s doctors. When I needed love, God provided it to me in the form of the women at the milk bank.

The scrapbooking volunteers met every Wednesday from ten to one to take pictures and create paper memories of the children in the ICU. Surely, God put them there on my day off, so I wouldn’t go crazy by my son’s bedside. I participated in scrapbooking once a week. We gabbed about the weather or our families. For those few hours, I felt like I was spending time with my girlfriends instead of hiding away from the gloomy NICU. Those women took pride in my son’s changes from week to week and claimed him as their own.  By the time our discharge date rolled around, we were sad to say goodbye.

Those are a few examples of how God worked through the men and women around me to keep me going. I never felt a lack of people rooting for me or willing to sacrifice something to help me. I realized others can identify Christ much more in our actions than by our location on Sunday mornings.

 

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Finding the Bright Side

Philippians 4:8 “Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. 9The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.”

Since Sammy’s birth, I’ve realized how timeless the story of the Israeilites is. When I look in the mirror, I often see a cranky Israelite staring back at me. Let’s follow the story for a minute. (You can find the unabbreviated version in Exodus.)

The Israelites were in bondage and GOD delivered them. He protected them by dividing a sea and obliterating their persecutors. Sadly, every time something didn’t go their way, they doubted God’s plan and begged to go back to slavery. “Things were bad there, but not like this!” They groaned. In reality, the previous situation was exponentially worse. The father of lies tempted them to forget all GOD had done for them. They focused on their current plight and became locked in a sinking sand of despair.

I’ve found myself in that place more times than I would like to admit. I’ve found myself complaining about a few days without any sleep when GOD sustained me through the first year of my son’s life on a few hours of sleep a night. I snarl when Sammy only drinks five oz of his Pediasure, forgetting not too long ago he didn’t take anything by mouth. Sometimes I snap at my son for getting into everything before remembering I prayed for that capability. Honestly, that kind of malarkey can go on for hours if I don’t stop and get a spiritual rehaul.

I ask myself:

What does GOD see in this moment?

For the Israelites, He saw a future which none of them could imagine. He saw milk and honey and rest. They bemoaned the manna GOD gave them, not knowing their bellies would be filled to the brim with rich delicacies if they held out and trusted GOD. What GOD saw was an opportunity for them to thank Him for His past blessings.

That’s what GOD sees when he looks as me, holding a spoon an inch away from my son’s mouth who hasn’t eaten anything all day. He sees an opportunity for me to praise Him anyway. GOD calls me to remember all the todays I’ve enjoyed with my son, who only by grace has made it this far.

What’s the prize for stepping back and reminding ourselves of the beauty of our children despite our circumstances? The peace. And oh, how I love peace! A deep breath followed by a soak in the tub sniffing lavender oil. Calm. That doesn’t mean that the situation will change. But my perspective will, and that makes a big difference.

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Stone 2 – Those who loved my son

1 Peter 4:8 Above all, keep loving one another earnestly, since love covers a multitude of sins

Out of all the memories I collected in the NICU, the ones involving loving people stick with me the most. Looking back, I remember none of the neonatologists (doctors) touched my son. At first, I couldn’t understand why.  Then I witnessed the deaths of many infants. They couldn’t form an attachment to their subject. Instead, they labored for babies they would never hold in their arms. By channeling their love into the science of medicine, they maximized their help.

For the most part, the nurses and therapists at the hospital took care of my son as if he were their own. They laughed, swooned, and took pride in his accomplishments. Most importantly, they nurtured him regardless of his prognosis. An ICU nurse works a shift where her patient passes away and then comes back the next day, resolved to help another child whose life hangs in the balance. There is a special place in heaven for people who endure death’s wrath regularly to raise the quality of life for us all.

I am forever indebted to these individuals. May GOD bless them immensely for the work they do.

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Stones at the Jordan

Joshua 4:21 And he said to the people of Israel, “When your children ask their fathers in times to come, ‘What do these stones mean?’ 22 then you shall let your children know, ‘Israel passed over this Jordan on dry ground.’ 23 For the Lord your God dried up the waters of the Jordan for you until you passed over, as the Lord your God did to the Red Sea, which he dried up for us until we passed over, 24 so that all the peoples of the earth may know that the hand of the Lord is mighty, that you may fear the Lord your God forever.”

How we carry our burdens testifies to how good GOD is even in times of trouble. Over the next few weeks, I will share twelve memories. When my son asks me why I tell these stories again and again, I will tell him, “Because GOD is mighty. GOD took you from the throws of death and allowed you to stay on this earth a little while longer. You should never take that for granted. And neither should I.”

Stone 1
I wrote this poem in the darkest hour of our NICU stay. The baby in the isolette next to Sammy’s went on to see the Father. Distraught, I penned these words for my son.

The first time I saw you
I understood
grace.
I learned to appreciate
Every day.
Every hour.
Every minute.
Every second we are together.
I am thankful
For every blink of an eye.
Every cry.
Every dirty diaper.
Every soiled onesie.
I rejoice
because
God gave you to me
And for every moment
You are in my life,
I am
better.

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What Makes Caregiving Rewarding?

In 2014, I was selected as a runner-up in the 14th Annual Shield HeathCare Caregiver Story Contest. You don’t have to be a fabulous writer to win, and it helps to share and hear from others who understand the struggles associated with caregiving. Perhaps if you start composing your thoughts now, by November when the 2015 deadline arrives, you will be ready to submit a winning entry! Check it out!

What Makes Caregiving Rewarding?

I didn’t plan on giving birth early, or having a baby smaller than average for his gestational age, or consenting to his open-heart surgery at two months. Nor did I plan on authorizing a feeding tube insertion, or spending 203 days with him in the NICU, or bringing him home on oxygen.

Thankfully, the Lord took my unmet expectations and turned them into a rewarding journey.

Sammy threw up everything from an hour-long tube feed and then continued on with life as if nothing had happened. This occurred three to four times daily, but it didn’t bother him. Don’t sweat what you can’t control.

He ripped off his nasal cannula habitually and then wailed when we stuck the Duoderm back on his face. I don’t want to be handicapped by this. Don’t limit me.

He giggled and smiled even though he was practically immobile at a year old. Contentment isn’t based on my circumstances.

When the days seem long and we’re cooped up in the house because it’s flu season, or we can’t deviate from his feeding schedule, or there is not one cent left in the bank; with the right perspective, playing peek-a-boo with me can be just as rewarding as a fancy night out on the town.

When he fights his therapists or refuses to drink his formula, I wonder what I can do to make this child see that he needs this to survive. Sit back and be thankful that we are blessed enough to share each other’s company.

When he sat up at thirteen months, I felt the success of our efforts. At sixteen months when he started crawling, I didn’t care that most people’s kids are walking by that point, I was proud that he had made it that far. Support me and I will fly! Don’t compare me. I will get to my destination in my time, not yours.

Because of Sammy, I embrace progress. When nothing is going right, I look back. Sometimes I sneak a peek at the worst days – where his heart beat through the paper-thin skin covering his chest. I fall to my knees and praise GOD that today is not one of those days. And when we have to rush him to the hospital at three AM because a virus brought on respiratory distress, I reach back to the good days. Days when he signed “more” for the first time. Days when he ate a good meal. Being Sammy’s caretaker has taught me to take deep breaths and enjoy life when things are slow, because an hour will inevitably come when I will need to cling to those moments.

He is my reward for what I do. When he smiles, when he rebels, when he struggles, when he overcomes, I receive the blessing of watching it all happen; knowing that each day with Sammy, whether blue sky or dreary, is a miracle.

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The Rice Krispie Treat Delimma

One of the reasons I love making Rice Krispie Treats is they are fool-proof. They have never surprised me – until today. After melting the butter, I added the marshmallows and started stirring. Instead of liquefying, they swirled in the pot, a taunting vortex. After ten minutes, it was clear those fluffy balls had no intention of changing their state of matter on my behalf. I grabbed the bowl of Rice Krispies and tossed a butter-coated marshmallow in it, smothering it in crunchy cereal. Laughing softly, I studied my creation and named it the “Inside out Rice Krispie Treat.”

Three years ago when encountered with the same predicament, I would have tossed the whole batch of stubborn marshmallows and labeled my baking adventure for the day an epic failure.  Now I can take something not so cookie-cutter perfect and see the beauty in it. How? One word. Samuel.
DAY 1Meet Samuel, my 27 weeker. Born 1 lb 10 oz. He spent 203 days in the Neonatal ICU (NICU). During my son’s stay in the hospital, I wrote devotionals based on the lessons God taught me. The hospital prohibited me from leaving paper copies of these lessons where anyone could benefit from them because it would show preference toward Christianity. Nevertheless, I shared those lessons with as many people as I could.

God has called me to encourage parents who have walked the road I’ve walked, who have seen their children suffer and witnessed God’s grace firsthand. My son will be three soon, and it is time to fulfill my obligation to the Father.

Please feel free to share your story below or email me at darla@raisingafighter.com.  Our children are a testament of God’s power. The struggles we have and how we conquer them glorify our great God.  I look forward to taking this journey with you.

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