I hope you don’t mind my vulnerability and rawness.
“Lord, please don’t give me a child with special needs.”
I’ve prayed this prayer.
“Mothers of children with special needs are courageous and well equipped. I’m not strong enough for that” I thought. “God will give me healthy children. I am his child, and I am blessed and highly favored.”
Have you ever wondered if Gods plan for your life could actually be greater than what you imagined for yourself? Yes, you may have to suffer for a little while, but what if that suffering gave birth to new life and purpose?
My intention after suffering grief is to love harder. To not take things for granted. I am a not the person I was before grief, nor would I ever want to be. Losing Michael took something from me. It ripped me to my core, and made me question everything in life. At first it made me bitter, but then my heart was softened and my burden was lightened. I was made for this moment. I needed to be stripped of all pride, to be broken down from within-so that I might know how to truly rely on the Father.
So where do I go from here? My hope is to help others realize that Gods grace is enough. That even in your darkest hour, his love is sufficient, and his mercies are new. Yes, it is unfair. It aches to the core. But, with great pain, there comes great triumph and healing.
My intention is to turn my pain into something well formed. I will never take Malachi’s life and his abilities for granted. Yes, his life involves struggles, but he is alive-he is my child and he is loved. Forever he will be loved. I am a mother of a child with special needs. You make it because you have to, not because you are “strong.”
I am a mother of a child that died in my arms. I have grieved until my heart felt shattered. I have cried enough tears to fill the oceans deep. But I am here, and I have purpose. My intention is to be more than a survivor, but to be an overcomer-through Christ. This is my intention.
My calling is more than just writing. If you would like me to speak at a small group at your church, an event for grief support, a Wednesday night class or service-please contact me at allisonstone0422@yahoo.com. I would love to share my story, about how God has given me new life, even in the mist of bitter suffering-and how he can do the same for you. His grace is enough. Period.
“Your boy is sick”…the words rolled of his tongue in a fashion that was hard as stone. No emotion. “There is not a lot we can do for him at this time,” he said. “But we have to do something” I cried out-“his head is swelling, his heart rate is dropping; there has to be something that can be done.”
I will never forget the first conversation I had with Malachi’s neurosurgeon. Malachi’s outlook was grim and his quality of life seemed bleak. “My baby doesn’t deserve this,” I would cry out.
But death did not have a hold on Malachi. He would live, and his life would be meaningful. Hydrocephalus will not define Malachi. Malachi is more than a conqueror through Jesus Christ!
September is Hydrocephalus Awareness month.
Malachi developed hydrocephalus after he developed a grade 4 brain bleed from being born prematurely. The impact of labor was too much for the tiny vessels in his brain, and the blood “clogged” his ventricles, not allowing cerebral spinal fluid to drain out to the spine as it should. Hydrocephalus is a disease that has NO CURE. The only treatment for hydrocephalus is risky and invasive brain surgery.
In fact over 1 million people, young and old are living with hydrocephalus. However, even after 50 years, we are nowhere near a cure, let alone a less invasive treatment option.
Research is essential. At the very least we need treatment options that have more positive and long term outcomes. As well as diagnostic tools that are noninvasive and cost effective. Our shunted heroes deserve a cure!
Malachi’s VP shunt has allowed him to defy so many predictions that were made over his life…all because it allows his cerebral spinal fluid to drain away from his delicate brain tissue, and into his abdominal cavity. This allows his beautiful brain to grow, and not be compressed from rising CSF levels.
When Malachi was too little to get a shunt, he had a reservoir placed (brain surgery). This reservoir served as a device where a needle could be inserted and spinal fluid could be drained. Malachi had 10-20 mls of fluid drained every day. We were so thankful for the reservoir. Although it was not perfect by any means-infection risks, pain from the needle, and bradycardia episodes after taps-it was much better than the alternative.
Before Malachi had his reservoir placed (the surgeon would not perform the surgery until he was 800 grams), he would have taps with a large needle that drained directly through his skin and down into his ventricle through the soft spot on his head. This could not be done daily-first of all because it went much deeper in the brain and was risky, and secondly because of the added risk of infection. Therefore, Malachi would have his head drained every 3-4 days.
While we waited, Malachi’s head would swell. It was awful. He was in pain from the spinal fluid compressing his brain tissue, and there was nothing I could do but sit with him, and stare through plexiglass walls. I couldn’t even hold him because when we tried, his heart rate would drop and his oxygen levels would fall dangerously low. His hydrocephalus effected every part of him. It was hard to watch…his head enlarged, his fontanelle bulging, and his little eyes sunken in. It was heartbreaking. Malachi after having his head tapped. Malachi before surgery for his VP shunt.
Malachi after his surgery..he had a rough recovery.
Now I look at my smiling 8 month old boy, and grin from ear to ear. He has been through so many things in his short life; yet, he is the most joyful child I know. He loves bath time, watching himself in the mirror, and rocking in the rocking chair. He loves when mommy sings to him, and when daddy tickles his belly. He is vibrant, determined, and energetic. I love my shunted hero!
Things are different now. We still have fears and uncertainty, but it doesn’t feel as “life or death” as it once did. However, if I said it was easy I would be lying. You never know what the next day will bring. While Malachi’s reflux has improved (praise God!) he still is only eating in his sleep (I know it sounds crazy…but it’s more common then you may think). G-tube placement surgery is scheduled for October 6th.
We never thought Malachi would need a G-tube. But, I have tried everything in my might to keep him from getting to this point, and my efforts are still not enough. Malachi lost weight this week; and we need optimal nutrition to nourish his growing brain. We don’t want to look back on life and wonder “if he had the nutrition he needed, would he have flourished?” Therefore; we embark on a road to G-tube placement.
While we dread the surgery and the possible complications that could arise, I know in my heart that this is what Malachi needs to supplement his oral feeds. Malachi runs this show, not I. And while I fight daily to protect him, there are some things that are out of my control. I give this to you Lord-it’s out of my hands.
“The LORD says, “I will guide you along the best pathway for your life. I will advise you and watch over you.” Psalms 32:8 NLT
Unless a miracle occurs (which of course we know is possible!), Malachi will be having surgery. Will you please join with us in prayer now? Prayer for healing of Malachi. Prayer for protection as we travel to and from Durham weekly. Prayer for this upcoming surgery-that it will be void of complications, and that he will not suffer in pain. And as always, please pray for his brain and shunt functioning.
As mentioned earlier-the only treatment for hydrocephalus is brain surgery. 50% of shunts fail within the first 18 months. We are always praying that Malachi’s shunt will continue to function as it should, and that ultimately one day he will not even need it.
Thank you for following our journey. For praying with us, and standing by our side. Take a moment out of your busy day, and remember those suffering with hydrocephalus. It’s not a disease that is talked about often, but for those who have it-it effects their entire world.
It’s ok to cry hysterically-to grieve with every piece of you.
Your child is worth that.
The world moves on, but your world stands still. It is haunted by tiny caskets, empty cribs, and unspoken lullabies. So cry…
Release those stored up tears.
I know you feel crushed with despair, like you can barely catch your breath, but surely I tell you, there is a day coming soon. A day when you will meet again. And hold them in your arms.
But until then, it’s ok to lose yourself to tears.
It’s ok to cry.
Sincerely,
A mother that understands. Michael Scott Austin 12/28/14 – 01/21/15
I lie here on the floor in a bath of tears, my body violently shaking…
That’s the thing about losing a child-you are fine one moment, and then it hits you like a punch in the chest-they are gone.
My husband lifts me off the floor, and tries to heal the pain with words. But I’m broken. A piece of me is here, and another far away. I am living and breathing, yet gasping for air.
Time does not heal these deep set wounds. Those wounds get covered up over time, but the scab is ripped off over and over again-leaving tissue that is open and fresh.
And I am left feeling the way I felt the day I said goodbye…the day I watched the pinkness of your skin drain from you. The day you took your last breathe.
I try so hard to keep it locked away inside, but moments of despair creep in like an unexpected rain storm.
I try to see the beauty in the life I hold so dear…but as I lie here next to my baby-I can feel your absence. I can feel the void. I long to have have you near.
Each day is another day without you. A day my son has to live without his brother. A mother without her baby. A father without his son.
The pain is ever present. It is ever changing, yet always the same.
Tomorrow I will get up and face the day ahead…but a part of me is gone.
I am…but I am not.
I miss you Michael Scott Austin. 25 days…25 days with you was not enough, yet it was everything.
“He heals the broken in heart, And binds up their wounds.”
“If I could just touch your hand, maybe my soul could breathe”….I place my hand inside the incubator, and for a second our hands meet. Your tiny precious fingers wrap around mine. Such fragility-with visible veins and a moist stickiness about them. Yet, I could hold them for a lifetime. But, within seconds I notice your oxygen levels going down. “He is just agitated,” the nurse replies. Oh, how my inmost being aches just to hold you. Tears begin to flow…”I can’t even touch my baby without causing harm,” I proclaim. “My body has forever failed you.” I sit beside you instead, watching you squirm about…alarms going off. “You aren’t supposed to have to suffer like this. It wasn’t supposed to be this way.” “I will bring some morphine to help him relax,” the nurse states….”he seems to be fighting the ventilator.” I stare at you from behind the plexiglass. My heart wants to burst. “I just want to touch you. I need to feel you. You are mine-yet, I am empty handed.” …I guess I will go pump. …”it’s the only thing I can do for you.”
I remember this day like it was yesterday. It was a common occurrence for my heart to long to touch and hold my babies…but not being able to because of their fragile state of health. They were holding onto life, and many times I felt as if I was too. I would hold my stomach and mourn. “You are supposed to be inside of me-safe and secure.” It’s not fair! Am I being punished? Could I have prevented this? …All these thoughts of uncertainty and guilt ran through my mind.
Today, I hold Malachi closely-his soft touch and rhythmic breathing eludes a peace and a calmness within me. One hand on my chest, the other holding my hair so tightly…your face nuzzled within my neck. I see my tears falling onto his soft skin and think for a moment…”if only my tears could heal you…” I hold his smooth fingers-no longer sticky and translucent, and think of how far we have come. I longed for so long to hold you, now I never want to let you go. Shouldn’t this be enough? Yet, my mind is weary from frustration. Weekly trips to Duke, long appointments filled with tears and vomit. Weekly trips to Rocky Mount for physical therapy. Weight checks, now feeding therapy. Possible surgery in your future. Yes, you are worth every bit of it Malachi. And what we face now can never be as tragic as the battles we once fought. But, I know it’s hard. I’m trying to make your life as “normal” and ” pleasant” as possible. I try to squeeze in as many tickle tummy, patty cakes, and ” the cow goes mooooo” as I can. Your smile is what gets me through each day. Your smile hits me like a bolt of lightning-and for a second, all my troubles are vanished into the air.
I must admit, the past month has been like riding a wave onto a crashing shore. On one hand, I am elated in the progression I have seen in Malachi. No, Malachi does not roll over, crawl…nor does he enjoy eating (previous post). But, he is the happiest most joyful little 8 month old (4 months corrected) little boy that you will ever meet. Yes, he still has moments of fussiness like any baby, but BOY does his smile light up a room. He has come so far in Physical Therapy. Just recently he started lifting up his feet, and trying to touch his little toes. Malachi has low core muscle tone, and the fact that he can now squeeze his tiny tummy muscles, and hold his legs up is a huge accomplishment for him. He cannot roll over yet…in fact he hates anything to do with trying to roll. But, with a little trunk rotation, Malachi can finish the roll. Sometimes he can roll off his tummy if his hands are placed in the right position, but usually he just props himself up on his forearms and looks around.
We are currently working on trying to get Malachi to pivot for toys, and then we can start learning to belly crawl. While Malachi has the skill set of a 4 month old (for the most part)…you can tell that he has been out of the womb longer. He is not mobile, but boy does he always want to be on the go. You place him on his tummy and he will grunt and move his arms like he is trying to go somewhere. The physical therapist says…”he is more interested in wanting to crawl than learning to roll…” “He must not have read the baby book on development,” she adds…”and that’s ok!” I will say that I have seen a great improvement since last month in Malachi’s ability to sit up with limited support. If you look at a picture of him at 7 months old, and then at 8 months old-you can see that his head control and stability has greatly improved.
Malachi at 7 months old (3 months corrected)…not digging the whole picture taking thing. I think he was trying to eat his shirt.Malachi at 8 months old. Again-not too sure about taking pictures. But isn’t that face the cutest? He is supported sitting in this picture. Something he could not do at 7 months.
Malachi’s PT always says that he is the most determined little boy. She states: Even if he does struggle in learning to walk, Malachi is going to have “bumps and bruises from trying to walk,” from his incredible resoluteness. “Why would Malachi struggle in learning to walk?”…you might ask. Malachi has been diagnosed with mild hypertonia. In other words, due to the brain bleed that he sustained at birth, sometimes his muscles fire and tighten involuntarily. However, Malachi is such a fighter. He fights like a micropreemie…and that is a strength like no other.
In terms of fine motor skills, Malachi also has completely mastered the whole “grab and put things into your mouth” thing. Toy keys, blankets, fingers, mommy’s hair…you name it…it’s going straight into Malachi’s “mouthy hole,”as we call it. Malachi loves to babble non stop, and he can follow me with his eyes from across the room. We have a long way to go in meeting each milestone, but Malachi is trying so hard-and that’s all I can ask of him. He will do things when he is ready. Yes, it can be extremely frustrating at times, especially watching him seem so disinterested at times in learning new skills. But we will get there. “One day at a time,” I tell myself.
I try to focus on what Malachi can do, rather than what he cannot do. Yes, Malachi struggles…but I am so proud of him and all that he has accomplished thus far. It may not seem like much to you, but in terms of how it could be, it is monumental. I used to cry as I watched other babies, and even other micropreemies that seemed to be meeting milestones more quickly than Malachi. I would compare him to other babies his age and get so discouraged. And then I came across this verse, and I felt it was very relevant to my life. I wanted to share it with you…
“Then I realized that my heart was bitter, and I was all torn up inside. I was so foolish and ignorant— I must have seemed like a senseless animal to you. Yet I still belong to you; you hold my right hand. You guide me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” (Psalms 73:21-26 NLT)
…Even though I fail daily, I still belong to Christ, and he is holding me by the hand through it all. Even when I feel alone, he is there.
For a 23 weeker with a grade 4 brain bleed, Malachi has already blown so many doctors away. He may struggle in some areas, but he also has made leaps and bounds. It is so unfair to Malachi for me to compare him to babies that had such different paths in life. How can I compare him to a baby that did not fight for his life? I can’t.
One of Malachi’s Nurse Practitioners wrote to me and said “One of my best memories of Malachi is from the the day we extubated him after surgery and he was “rocking the breathing thing”….I knew that day that your little guy was a fighter and was gonna surprise “medical” people for years to come.” Her words lifted me up. I remember reading her words and crying, as it took me back to that very day. There were so many people that believed in Malachi…even when the statistics were against him.
So what if your baby does not defy all the odds? They are still valuable. Value should not be based on what your child can or cannot do, but rather the joy they bring. Even the parent that cares for the blind child- the child that cannot walk, the child that has limited verbal interactions- they are still valuable. They still bring joy-they still have meaning, and a purpose. So, throw the baby book out the window. Believe in your child. Look for progression, and don’t focus on a time table. Malachi is doing things on “his time” …and while as his mom I want nothing more than to see him live a life of independence and influence. I know that he is already changing me for the better, and that’s a pretty good start.
8 month mommy photo session.
So while I work hard in pushing Malachi to maximize his potential, I also need a balance. Time to just snuggle, or to just read a book. Time by the lake to reflect and sing songs. Life is speeding by so quickly, and the last thing I want to do is spend all my time worrying about things that no one can predict. Malachi knows he is loved beyond imagination, he is joyful & exceeding expectations. I’m so proud of you Malachi!
Snuggles with my daddy.Snuggles with mommy.
Through this journey there have been so many times when I have had to throw my hands in the air and say..” Ok Lord, I don’t understand…but I’m trusting you.” Trusting God in the depths of a storm can be difficult. I know for me it has been hard to trust God after the death of Michael, and watching Malachi go through such immense suffering. When you are deeply wounded, trusting God can be painstakingly exhausting. In your heart you want to give it all to Him, but your crushed spirit is screaming out for answers. You cry out-“why can’t life be easy?” But the problem with an easy life is…it masks your need for Christ. Yes, the past few weeks have been difficult….Malachi is still not gaining weight as he should, vomiting, and refusing to eat at times. But, we have also learned to lean on God for understanding. To trust him, even when we don’t see the bright light in sight.
“Commit everything you do to the LORD. Trust him, and he will help you.” (Psalms 37:5 NLT)
So while life is not easy, I am thankful for the struggle. Not because it feels good, but because it is propelling me forward. Would an easy life be more convenient? Absolutely. But, this is the hand I’ve been dealt. And I know that God does not make mistakes. And so we wait. We wait for direction, provision, and guidance.
“Be still in the presence of the LORD, and wait patiently for him to act…” (Psalms 37:7 NL
So how can you pray specifically for Malachi? Pray for his development, as he strives to meet his milestones. Pray for healing of his brain, and continued functioning of his shunt. Pray that he will gain weight this week, and overcome this food aversion. Pray that if Malachi does have to have surgery for G-tube placement, that it will be void of complications. Pray that we will make the right decision. Pray for his muscle tone in his legs, arms, and core. Complete healing.
People ask me sometimes, “How do you do it? …losing a child, raising a child that is medically complex…I just don’t know how you do it and keep going” or “it takes a special person to raise a child like Malachi.” But does it? Malachi is so easy to love. Sometimes I don’t know how to respond to such remarks. You make it because you have no other choice. A mother that is raising a child with any disability or loss has no other choice but to keep moving forward. You find a way to put one foot before the other. You learn to be happy for the people that never struggle to get pregnant or make it to a term pregnancy. “Rejoice with those that rejoice, mourn with those who mourn” (Romans 12:15, NIV). You rejoice for the person that may have what you have not, because that is what we are called to do. I am so thankful for the people that have mourned with me and shared in my sorrow. When you cry with me, it is as if some of the weight is taken off my chest. It is as if you are helping me carry the load.
You pray for strength, and push onward- because the alternative is not living. You struggle daily, but you pick up the pieces of your broken life and like shattered glass in a mosaic piece of art…you try to make something beautiful out if it.
I throw the bottle onto the floor in frustration. “Why do you not want to eat?” “I don’t understand…” I never thought Malachi would be the preemie that had feeding issues. Malachi always loved to eat. Even with his severe reflux; Malachi would eat until he would vomit, and then eat again. He loved his bottle. He was gaining weight. He was happy. Who knew that a virus could have such lasting effects?
Three weeks ago Malachi suffered an awful GI bug. He wouldn’t eat, he had watery diarrhea every hour or two, and he lost weight. At his lowest he weighed a mere 12 lb 14 oz. We have tried so many things to get our sweet baby to eat…distraction techniques, using different positions, and different bottles…I even resorted to climbing in his crib and letting him watch his mobile while he ate. He pretty much was to the point where he would only eat in his sleep. I sobbed in frustration. Most babies love to eat. How can something so satisfying bring my baby so much pain? We offer him the bottle- he cries and turns his head. The GI doctor brings up the word “tube feeding”…but I cringe at the thought. I don’t want that for my child. I want his life to be as “normal” as possible. “This is just a phase” I tell myself.
We try everything…different formulas, different bottles, different nipple sizes…but nothing seems to be working. After weeks of diarrhea, stool samples, blood work, OT evaluations, and multiple trips to Duke….Malachi finally has been diagnosed with having a food aversion. In other words…he does not want to eat because he now associates eating with pain. He only gained 3 oz this week, which is not enough to continue good growth and development. We are starting treatment by beginning the medication Reglan (to increase bowel motility and stomach emptying) and increasing his reflux medication. We have also changed his formula (trying to change his eating experience). We will be starting outpatient therapy at Duke with a feeding team to try to help Malachi overcome these feeding issues. Feeding issues are VERY common among the micro preemie population. Many preemies often have oral aversions because they required breathing tubes and feeding tubes to survive- which are extremely uncomfortable. Malachi thankfully does not have an oral aversion (he loves putting toys in his mouth and sucking his pacifier or fingers)…he has an aversion to eating. There is a critical time in development between the 3-4 month age in babies where eating is no longer reflexive, and instead children choose to eat. In other words, they eat because they desire to, and not because they have a primitive reflex to suck.
Unfortunately, this is the time when Malachi developed his virus-causing him to associate eating with unpleasant feelings. Now, every time we try to give him the bottle he cries and refuses to drink. Sometimes I spend an hour just trying to get him to eat 3 ounces. Also-he is no longer receiving breastmilk, which not only helped him gain weight, but was much more gentle on his tummy. Unfortunately, with the stress of losing Michael and keeping up with Malachi’s needs, my production of milk quickly dwindled. The doctors at Duke are leaning towards Malachi getting a gastric tube placed to help supplement his calories while he is learning to feed. Basically, he would eat what he wants, and then we would tube feed the rest…all the long while he is receiving therapy from a feeding specialist.
When the doctors first brought up the word gastric tube, I fell apart. I thought…”great, another device that screams ‘my child is different’ …another battle to overcome…another surgery.” But I also want what is best for my child. He needs the nutrition, and I know he is tired of me fighting him to eat. I left the hospital feeling so defeated. I never wanted this for my child. I don’t mind learning to care for a gastric tube, or traveling to Duke for therapy. I can handle it. I’m thinking about the future of Malachi. You know…when I was in the NICU I had a hard time seeing past the day ahead of me. We were fighting for the very life of Malachi, and it was hard to see what a few years down the road would look like- let alone a few days. It was minute by minute. ABG result and vent change to ABG result and vent change. It was surviving surgery, and not developing an infection. It was looking through glass walls and wanting nothing more than my baby to make it to the next day. Today, things are different. I have time to think more about the future- and to be honest-it’s frightening. The unknowns. The questions.
In the NICU you become numb to disappointing news. I remember the day the doctors told me that Malachi’s brain scan was now showing that he had PVL, and how I didn’t even shed a tear. Was I upset? Yes…PVL increases the likelihood for developmental and cognitive delays; but, I was so numb from all the discouraging news I heard on a daily basis, from the passing of Michael, and the emotions I felt as I dreaded Malachi’s upcoming brain surgery- that it didn’t have a great impact on the way I felt. Malachi was alive- and in that moment-that was enough. I tell you all this to say, I almost feel like disappointing news is harder to wrap your head around when you leave the NICU setting. Hearing that my son may need a G-tube hit me like a ton of bricks. It brought back fear and raw emotions. I felt like crying out to God “hasn’t Malachi been through enough?” But then I stopped myself. How selfish of me. God saved Malachi. Malachi is a gift…he is vibrant, and happy. He knows me. He is goofy, joyful, and lights up a room. God has brought him through so much already, and I know we will overcome this too. This is just another page to our story.
Once again, we are reminded that we cannot do this without the strength that comes from Jesus Christ our Lord and Savior. We just cannot make it alone. Also, I am so thankful for the micro preemie mamas I have meet along the way- with their encouraging words and super hero like strength. Yvonne, Lindsey, Leah…just to name a few…you rock! You can’t survive this micro preemie world without faith and fellow micro preemie mama friends who ‘get it’…who truly understand.
So where do we go from here? We pray. Jake and I have gone off to the lake for a few days. No TV, no worries from the world-just time away to spend with our precious boy. Please continue to pray with us for Malachi. Pray that we will make the right decision as his parents about his feeding needs. Continue to pray for his development, brain growth, and muscle tone. I will try to post again soon to let you know how therapy is going, and what Malachi has been up to these days (besides refusing to eat.) He is still such a happy boy, despite all he goes through. I know I tell you all the time- but you are my hero Malachi!
2 Corinthians 4:8 “We are hard pressed on every side; but not crushed; perplexed, but not in despair…”
“There is a time for everything, a season for every activity under heaven. A time to cry and a time to laugh. A time to grieve and a time to dance.” Ecclesiastes 3:1,4
I can hear daddy singing to you from down the hall, I hear your voice softly cooing, and my heart melts. I wake up and look to see you smiling in your bassinet beside me. Your smile lights up my entire world –it can make my mood or feelings instantly change for the better. There are so many days when I wake up feeling inadequate. I ask myself “am I doing enough?” …then I see your gummy smile, and it is like you are saying “Mommy—you are more than enough.” I love you Malachi. Being your mother is the greatest blessing I have ever been given. Many people see you, and at first glance you seem like any other child. You are adorable—with those big blue eye that make people delight over you. You smile with those dimples, and your entire face lights up. You are such a happy boy. They don’t see the struggles you have endured. They don’t see your strength and determination. But I see it Malachi. It is because of you that I see life in a whole new way—and I thank you for that. Daddy just said the other day…”sometimes I cry thinking about all that Malachi has had to go through.” And I agree—you are the strongest little boy I know. The physical therapist this week couldn’t get over how determined you are. Playing is hard for you. Laying on your stomach often makes you vomit, and sitting up sometimes makes you pant in your breathing, and feel short of breath. But it doesn’t stop you. The odds have always been against you. But somehow you always find a way to overcome. When the odds are one in a million—you always strive to be that one. You are my hero Malachi.
The gentle ocean breeze, the salty air…the sound of the waves crashing to the shore. There is nothing quite like this view. It might just be my favorite.
Who am I kidding? THIS is my favorite view!
If you had told me I was going to be on a beach with Malachi, smiling & enjoying life a few months ago, I wouldn’t have believed you. For a long time I often wondered if life was ever going to be joyful again. I didn’t know if I had the strength to emerge from my pain. This week I laughed…I laughed to the point that I felt like my heart was lifted to the sky. I smiled. I cried. I even had moments of doubt and fear. But through it all, I am thankful for this life I have been given with Malachi.
Malachi has to be very cautious when going out into public due to his early birth. His lungs are not as developed, and they sustained damage from being on the ventilator for the first 6 weeks of his life. Until we can at least get through this first winter, we do not go grocery shopping, to church, or out in public for that matter, because we are protecting Malachi from germs. It takes time for the lungs to regenerate, and the doctors want us to be extremely cautious for the first two years of Malachi’s life. Even a “minor” cold could lead to a hospital stay, and flu or RSV could prove deadly. This is why I had such a hard time deciding if I was going to go to the beach with Malachi or not. But, I just couldn’t stand the idea of Malachi missing out on such an amazing opportunity—to hear the ocean, to feel the sand between his toes…
So what did we do? We brought the disinfecting wipes and headed to the beach! We were VERY cautious mind you. Malachi spent a lot of his time at the resort, but he also got the opportunity to get in the ocean for the very first time. It was amazing to see his face when the waves slipped over his little toes. He enjoyed sitting in the water, and he even took a long nap under the umbrella. This was the FIRST week we have had since being discharged from the hospital that we did not have a single appointment! Our physical therapist was on vacation, and somehow we managed to schedule all other appointments either before or after this particular week. We were able to focus on our family—and the love we have. We had time to play, time to think & clear our minds. We were even able to go out to eat at a restaurant as a family for the first time. We called ahead and reserved a private room at the Sea Captains that was away from all other guests—and as a family we were able to enjoy each other’s presence. Here are a few pictures from our beach trip…I hope you enjoy!
Sleepy baby boy.Malachi enjoyed napping with mommy. He is such a snuggle bunny.Tummy time pool side. YES, we do therapy even on vacation. 🙂The pool wasn’t my favorite. But I am still precious.Just me and my mommy.First night out for dinner at the Sea Captains.These blue eyes…Toes in the sand.The waves are my favorite.
I wish I could give you an update on Malachi’s weight, but he hasn’t been weighed since his check up on June 30th. If I had to guess, I would say he is almost 14lbs, but that is just an estimate. The doctors do not seem concerned with his weight gain. Miracles that have been evident in Malachi’s life over the past few weeks include that the opening in his heart (Patent Ductus Arteriosis) has closed, and will NOT need surgical intervention. Praise God! Also, he had a good eye exam that proved that he can track with his eyes, and he no longer has ROP (Retinopathy of Prematurity). The doctor did say that he had cortical brain damage from his brain bleed that could very well effect his vision & ability to focus; but he can definitely see to some degree. In physical therapy we are still working on his ability to roll, grasping toys, finding his feet, and stretching his lower leg muscles—which are a little tight (hypertonia). Just this past week (at the beach actually) Malachi started taking toys and putting them in his mouth. I have noticed that he can focus longer and track toys better than ever before. Furthermore, he smiles much more frequently. In fact, if his tummy is not hurting, or he is not hungry or sleeping—he is most likely smiling. Malachi also started sleeping through the night (for the most part), which is such a blessing. When he is awake, mommy has him busy practicing rolling, and learning to grab toys. We have to take things slow, so that he can tolerate the activity without vomiting & panting in his breathing; but, we find creative ways to play. I have learned that I can’t worry about the future. All I have is the now; and right now I have to be strong for Malachi. He needs me. We need each other.
On our last day at the beach, we stopped by the ocean one last time to talk to Michael. We wrote his name in his sand, prayed, and just took some time to remember him.
We always see Michael in the sun. He was shinning bright that morning.
… as I walked towards the ocean that morning, all I could see were broken seashells surrounding me. Where are all the beautiful seashells, the ones that aren’t shattered into pieces? …I thought. But, then I realized the beauty that existed in the broken seashells around me. I saw my own brokenness, and pain. For me, those broken shells represented unfulfilled dreams, emptiness, uncertainties…the loss of a child. Aren’t we all in a sense broken seashells that are battered by the waves of life, and the sand of time? We are searching for something to cling to. Searching for hope & truth in the midst of great chaos and disappointment. Psalms 34:18 states “The Lord is close to the brokenhearted; he rescues those who spirits are crushed.” Is your spirit crushed today? I know my spirit has been crushed, and if it wasn’t for the Lords peace and his holy spirit guiding me—I don’t know if I would have made it. Do I still fail daily? Certainly! But isn’t that the wonderful thing about grace? God’s grace is sufficient. In fact, the love of God is so vast & his mercies are new every morning—it is hard for our finite minds to even comprehend it. God sees the beauty within your brokenness, and he wants to provide you a net of safety. He longs to give you peace—to sustain you—to bind & heal your deep set wounds.
Psalms 55:22 Cast your burdens on the LORD, he will sustain you; he will never permit the righteous to be moved.
Psalms 147:3 He heals the brokenhearted and binds up their wounds.
The bottom line is—God’s grace is enough. No matter how I feel, or what the day holds. It is when we can truly let this sink into our hearts and minds that we are able to overcome great sadness & heal.
“I’m planning to spend the rest of my life just happy that God loves me. That he has forgiven me. And that he has made me his own.”
-Judah Smith (Life Is Book)
I have two options—I can live my life as the broken shell that struggles to even get out of bed in the morning; or I can focus on the beauty that Christ sees in my brokenness—and strive to live each day just happy to be a part of HIS team. It is about changing my perspective & focusing on the prize—eternal life with my Lord & Savior. THAT is what life is all about.
When I left the ocean that day I wrote Michael’s name in the sand. I watched as the water washed his name away. Gone from sight, but never gone from my heart. This is for you Michael…
Dear Michael,
Please forgive me for going on with life without you. There is not a day that I do not think of you. I feel so conflicted. How do I let go of you—or at least the grief that I bear, and still hold onto you? I don’t know if I am ready to let that go. Every morning when I rise I think of you. I wonder what you would look like, how you would act. I wonder what your smile would look like…what your cry would sound like. I’m sorry I ever left your bedside. I hope you never felt alone. There is an unexplainable void that losing you left within me. There is a place in my heart that no one but you could ever fill. I miss you Michael. Some days are worse than others. Today is one of those hard days, where the pain stings like salt on an open wound. I just want to stroke your cheek, to feel your warmth on my chest. The vividness of your memory fades a little with every day; and I can’t stand it. I want to remember every part of you. The good and the bad. I will never forget the first time I saw you— you were there one moment, and in the next—you were on your way to the NICU. I had not named you yet, and when I saw your face I knew right away—yes, that is my Michael. I remember the day you opened your eyes for the first time. Those beady blue eyes met mine. I hope for an instant my presence calmed your every fear. I am sorry I spent more time at your brother’s bedside. Even if it wasn’t much more time, I regret not being with you every second. Your brother was so much sicker than you. I didn’t have time to let you go. I still struggle daily trying to let you go. Sometimes when I am holding your brother, I try to imagine that I am holding you…just one more time. Please know that I love you. Daddy loves you. Malachi loves you. Your grandparents & even people you have never met love you. My life is forever changed because of you. Things that once seemed to matter…well, they just don’t matter anymore. I am so blessed to have known you; to have held you in my arms. No—it wasn’t enough, but in that moment—it was everything. I love you my sweet son. I love you Michael Scott Austin. Forever my baby you will be.
“The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be” –Horace Bushnell
The life challenges Malachi has faced have made him grow; they have made our entire family grow. These challenges have kept him alive. Malachi is an overcomer.
Each time I wake up and see his sweet face looking back at me, I am reminded of the miracle he truly is. Simple things like going outside and feeling the fresh air touch our faces, or rocking him on the porch outside, seem so monumental. For a long time I struggled to see past the next arterial blood gas, chest x-ray, or head ultrasound. There was a time when I held Malachi and thought it might be my last. I just knew I couldn’t bear to lose another child. I would hold him—and try to remember ever piece of him—every smell…every crease on his hand. Many tears have fallen on his precious face as I cried out to God to spare his life. Each venture outside, each new morning is something to be celebrated. Every day is a beautiful day to be alive.
First time holding Malachi. He was on the oscillator-high frequency ventilator.
If Malachi could express how he has been spending his days, I am sure he would talk about the first time he placed his little toes on the plush grass outside, or the time he got in the pool at grandmas, and how he splashed the water with his legs & feet. He might discuss his story times with mom, going for stroller rides in the neighborhood, or snuggles on the couch with dad. Malachi is learning that life can be fun. He is learning that there is LIFE outside of the NICU, and that life can be joyful.
Malachi snuggling with Daddy & Teddy.First time getting in the pool at Grandma Stone’s house.
Each and every day I strive to show Malachi how truly important he is—that he is valuable—that he is LOVED.
We visit Duke Children’s Hospital for Malachi’s Neurological, Eye, & GI follow ups, and every time we go I see at least 5-10 children that are either wheelchair bound, or severely handicapped. I am always amazed at how many smiles I see on these children’s faces. They are beautiful, loved, and perfect in their own unique ways. Unfortunately, nothing in life comes easy for them; and they will have to work hard in life to do things that most people take for granted. Does the value of these children diminish because they do not walk, or communicate as well as the child that is the star athlete? Are they any less important than the A honor roll student? Never. They are just as treasured, they are just as significant, and they are just as precious.
During my time in the NICU I have met several families that have been through similar journeys as ours. One lady in particular has greatly helped me in my passage towards embracing the unknown of Malachi’s life, and valuing him for who he is, and not what he will be. Her twin boys were bon at 24 weeks. She writes in her blog:
“Our boys aren’t the micro preemie unicorns; the ones who have no lasting effects. I sometimes think those kids are merely urban legends. I used to be at a loss for words when people would share the tale of their second cousin’s grandson who weighed two pounds at birth and is now a strapping linebacker headed to Harvard. I know the folks meant well, but their story is not most families’ reality. I now smile and say “how wonderful, but your cousin’s grandson is the exception to the rule. Most micro preemies face more challenges and lingering effects from their prematurity. Our guys are doing phenomenal, but they still have lots of therapists, doctor visits, and challenges. Other preemie friends face even more daily struggles. In any case, that’s ok. They are loved. They are survivors. They are valuable.” I hope in my own small way, one person at a time I can change people’s views of prematurity and maybe even kids that are differently-abled. That not every story has to end with the preemie unicorn. That the kid who uses a wheelchair to get around or an iPad to communicate is just as valuable and awesome as the kid scoring the touch down or winning the spelling bee. In the long run, most kids won’t grow up to be the president, the next Mother Theresa, Michael Jordan, or a musical superstar. What will matter in the long run is how we teach them to love. Everyone can love and be loved. That is what matters. “ (Etheridge, 2014 http://www.prayingforhisblessings.blogspot.com)
It is amazing the transformation just a couple weeks can make. I remember sitting in the nursery rocking Malachi one day and crying out loud to God “Lord, you are going to have to reveal yourself to me” after feeling as though Malachi didn’t even know who I was. He didn’t smile, he barely looked at me; and I was consumed in fear about his cognition. It was not until 5 months (6 weeks corrected) that Malachi smiled, and then he began to track me—to respond to my voice & presence. He knew me! At 8 weeks corrected he began to “coo” and baby talk. Sometimes he seems to be having a full on conversation with me. He bats at his toys, moves his little…well not so little anymore…arm & legs, as if he is jumping in excitement during play time. He amazes me every day. It is as if I can feel God saying “I’ve got this Allison—be patient; I will reveal myself to you in my timing.”
“Nonviable,” “blindness,” “deafness,” “cerebral palsy,” and “mental retardation”–terms that are often used to describe 23 weekers. Many of these words were proclaimed over Malachi’s life. Doctors suggested that it may be best not to monitor my babies, or perform medical intervention to save them. The statistics for 23 week micro preemie survivors are discouraging. I was told his chance of survival was less than 20%, and that surviving micro preemies often live a life that is “less than quality.” Malachi sustained a grade IV/III bilateral brain bleed. The left side was worse than the right. Malachi can definitely see—he is not deaf, and so far he is meeting his developmental milestones for his corrected age. I am thankful that the doctors did give my babies a chance, and that my Malachi is living. I am so grateful for modern medicine, and how far technology has come. But, I also know that the doctors are not God. God has the ultimate say over the quality of Malachi’s life and his level of independence. There is power in prayer.
“Then they cried to the Lord in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven.” Psalm 107: 28-30
We had our first physical therapy evaluation last week (at 9 weeks corrected), and the therapist was shocked with how good he was doing. She said “I would have never known he had a grade four brain bleed; let alone that he was a 23 weeker. Of course there are some things that Malachi will need help from physical therapy with. Malachi tends to have more extension than flexion; and he has some mild tightness in his thigh muscles and trunk—this is a result of some mild spasticity. However, every day I work with Malachi in stretching his muscles, increasing his range of motion, and assisting him in meeting his milestones. In the upcoming weeks we are working with Malachi on learning how to roll over, how to grab and pull up his feet, and holding/playing with toys. He will have physical therapy once a week for 60 minutes. The area of Malachi’s brain that was damaged not only controls his motor skills, but it also controls language. —therefore, we are constantly talking, reading, and singing to our sweet boy to help him build language skills. Our prayer is that the right side of the brain will take over the function of the injured areas of the left side of the brain. Brain tissue cannot regenerate, but the doctor’s state that many times with therapy the brain can form new connections and “rewire” itself in a sense. We are praying for complete restoration of his brain. We are trusting and believing that Malachi is taken care of. We are grateful for the Grace that God provides; he loves us—and the promises & plan that he has over Malachi’s life cannot be thwarted.
“Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise” Hebrews 10:23
We also had a very long appointment at Duke with the early intervention specialists that included a 3 hour stay, and blood work. The blood work revealed that his anemia of prematurity had greatly improved, and although his Calcium levels are still a little low (premature babies do not get that boost of Calcium and vitamin D in the third trimester)—they are improving, which is encouraging. Once again—all the doctors and staff were blown away that Malachi was a 23 weeker. Malachi is 2 ½ months corrected age, and developmentally he is doing everything at this point that he should be doing. In fact, in some areas, such as head control—he is actually more advanced than a 2 month old. However, we are still very much aware that the future is still in large unknown at his point. But, I rejoice in ANY good news I can get. The doctor also did not hear a heart murmur—which is an indication that his open PDA in his heart may be closed. He will have an echocardiogram next week—but we are praying it will be closed (so he won’t have to have heart surgery to close it). Overall, I left the appointment feeling encouraged. I told the doctors—he is my miracle! Before leaving, the doctor looked at me and said “keep doing what you are doing—you’re a great mom.” I held my head high as I left—I love being Malachi’s mom; and I am so proud of him. Malachi has shown me that children are so resilient. It is true when they say—you can never trust a preemie. Malachi smiles at us—and you would never know all the pain and suffering he has had to endure. And while we do not know exactly what deficits Malachi may or may not have—we know that with therapy, prayer, and faith in God nothing is impossible. He is already doing SO many things we were told he would never do. We no longer live “second by second” as we did in the NICU. Instead, we have now learned to just take one day at a time. We rejoice with Malachi with each success; and when we meet a bump in the road—we just keep on moving forward. We stay busy with appointments, but my job as Malachi’s mom is to keep his daily routines as normal as possible. I wake up each day with the hopes of making Malachi’s life joyful!
Prayer Requests for Malachi:
Brain—pray that his 6 month follow up scan of his brain will be encouraging. Pray that he meets his milestones, and that his shunt continues to work.
Spasticity—we pray that his spasticity will improve, and that it will not hinder his ability to walk in the future. We pray he will not develop seizures.
Improved vision & tracking (appointment for vision is in the beginning of July).
Reflux & gas pains (as we are transitioning from breast milk to formula since my milk supply has dwindled).
Heart—that the PDA is closed.
Lungs—that he will not get short of breath with activity.
Bones—that they will strengthen and grow.
Cognition—Malachi is catching up in weight and height (12 lb 8oz), but his head size is a little small when compared to other babies his corrected age. Pray that his brain will grow properly, brain myelination will occur, and his brain will find ways to “rewire” itself.
My husband was asked during our interview with the Wilson Daily Times (http://www.wilsontimes.com/News/Local/Story/37251352—LOSS–HOPE-AND-JOY) “what do you hope for Malachi in the future? Jake, with tears in his eyes explained that he use to have dreams of having a son that was a great athlete, and involved in sports. But, after losing a child you change your perspective. He states “I just want Malachi to be that best Malachi he can be…I want him to know he is loved…I want him to live a life of hope & joy…I want him to be happy.”It is true—while we are amazed with the strides Malachi has been making—it is hard not to worry about the unknowns. And that is ok; we know that ultimately God has a plan—and he is taking care of Malachi. We know that he is loved, and he is perfect to us.
Cast all your anxiety on Him, because He cares for you. (1 Peter 5:7)
I will never forget the day your heart stopped beating, and mine kept beating…. The day I had to learn to live a life without you.
I recall the first day that I went out into public after Michael had passed. I thought “I don’t know how to act. Do I smile as others walk passed me? Do I pretend like everything is alright?” I was scared to laugh. Scared to smile. I was afraid that my laughter would portray that my grief had passed; or worse, that I didn’t care about the loss of my son. Going out into the “real world” outside of hospital walls, monitors, and constant worry seemed unrealistic. I would hear people talk about their “problems” that seemed so inconsequential—and it would almost anger me. Learning to laugh, and have complete joy after losing Michael, and dealing with such a medically fragile child has been a challenge at times. But, I have been able to find joy, even in the core of grief. My smiles and laughter come much more easily than they used to. I like to think of them as a way of saying “I may feel like I’m drowning inside, but grief has not destroyed me”.
Thinking of the first day back to work since the twins were born, I recall how nervous I was—but I remember thinking, I just need to show people love. It was amazing how the Holy Spirit comforted me that morning as I drove to work. I thought, “God has given me the ability to love, and that is what I want to do today.” I had read the word that morning and came across the scripture
“” I pray that your love will overflow more and more, and that you will keep on growing in knowledge and understanding. (Philippians 1:9 NLT) “
I thought “wow—Lord let your love overflow through me today. There was a lady that had delivered a set of twins on our unit. I remember hearing the word “twins”… my heart sunk—a vivid image of a future of Michael and Malachi, my hopes and dreams for them flashed before my eyes. I thought—she is so blessed, and I really wanted to talk to her. She called out for something to drink, so I took it to her. We were talking, and I briefly shared with her my story about losing one of my twins. I admired her two precious babies in the bassinet beside her bed. We cried together and something she said stuck out in my mind—“I would have never known all that you have been through—you seem so happy.” The truth is, I was hurting—seeing her healthy babies made me long for Michaels touch so deeply; but it was also healing. I was forced to face my reality, and celebrate with this new mom in the midst of her elation. It is true, joy can exist even in the center of immense sorrow. In fact, great sorrow can actually expand our ability to have joy. When you lose something so precious to you, you learn to love deeper and harder. You learn to let go of your expectation of happiness, and find happiness in each and every moment.
We are called to rejoice with others in their blessings in life, and mourn with those when they face devastating loss. We are called to LOVE.
“Above all, keep loving one another earnestly, since love covers a multitude of sins. Show hospitality to one another without grumbling.” (1 Peter 4 8-9 NIV)
“Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God. Anyone who does not love does not know God, because God is love” (1 John 4 7-8 NIV)
One thing I have learned after the loss of a child is that many times people just don’t know what to say. Have you ever felt that way after experiencing intense grief? That nothing anyone could say could make things better? That you would almost rather them say nothing at all— than simplify your pain; or pity you? You really never have the “right words” when your soul has not felt such anguish. No one could fathom the numbness and sting that simultaneously overtook me when I had to carry my dead baby to the morgue, say my last goodbye, or hand him over to the funeral personnel; and I don’t expect anyone to. These are the events that make my story of grief unique to me.
It is through my own personal relationship through Christ, and reading his word that I have been able to move forward and not only survive, but emerge from my suffering. It is through reading what he says about loss & overcoming immense pain—and applying it to my life—that I have learned to LIVE again. It is through connecting with others that have experienced loss, and lifting each other up in with our words and actions. It is purposefully choosing each day to find Joy—and focus on our victory through Christ.
“No, despite all these things, overwhelming victory is ours through Christ, who loved us” (Romans 8:37 NLT)
After loss, the worst thing someone can do is pretend like the child never existed. Believe me, we want them more than anything to be REMEMBERED. They are forever our child, and not a day could ever go by that they do not come into our memories existence. It is through our verbalizations of them, through our memories, and momentums that they remain alive to us. It is both healing and therapeutic to talk about our babies that once were. Just this week I filled my house with pictures of both Michael & Malachi. I love seeing his face every morning. Does it hurt? Yes; but he is my child—and I want him to come up in conversation. I want people to grasp a glimpse into just how wonderful he was. I want Malachi to grow up knowing his brother. We long to be with him; but until we meet again, we will purposefully choose to be happy—to love deeper, to smile & laugh.
“Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything. 2 Corinthians 6:10
I love the last part of that verse—we have everything. It is true, when Christ is in the center of our heart, we do have everything. It is through laughter, smiles, & joy that we proclaim—Grief will not overcome; my hope remains in Christ! He is our only hope in this fallen world.
We love you Michael! We miss you more than you will ever know.
I walked in the living room a few nights ago to my husband crying, and holding a photo of Michael. I sat beside him, as we wept for our son together. The heaviness of our hearts-like a large dumbbell sitting on our chests. It was hard to breathe. A great America Author, Washington Irving, once stated:
“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”
-Washington Irving (1783 – 1859)
I find it most therapeutic to let my tears flow; it is as if I am releasing some of the pressure from the pain that is stored up. Some days it seems as if my storage of tears is an overflowing river; one that cannot be contained. The remarkable thing is, my heavenly father is my tear collector. Indeed -“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” (Psalms 56:8, NIV). Among many things I have learned through the loss of a child, I have learned that it is ok to be sad. Tears can be healing.
I remember so intensely the way I felt the day after Michael passed. I remember waking up, and feeling as if my stomach had been punched in the gut. I felt robbed. I recall holding my abdomen, crying; and saying repeatedly “I just want to hold you one more time” “I just need to feel you one more time” “I don’t understand.” Tears like streams fell, and I never thought I would be able to move forward. The truth is, one more hold, one more touch still would not have been good enough. I closed my eyes and tried to remember what it felt like when I held him for the first time; the softness of his frail skin; the smell and feel of his fuzzy blonde hair. My recollection of him was so vibrant; yet not satisfying enough—skewed by the images in my mind of his cold lifeless body. I prayed—“Lord, let me remember him as he was; let me see him as you see him-whole, healed, and new.”
The stages of grief for me were skewed; how could I adequately grieve the loss of Michael, and still stay strong for my child a few pods down in the NICU, fighting for his delicate life? I do however remember the stage of anger. I feel ashamed, but I remember being angry with God. I remember thinking; “how can I trust someone that let my child die.” I knew God had the power to heal my child; so why didn’t he? I had such immense faith that God was going to completely heal my Michael, and I felt cheated when his life was taken so abruptly from this world. I think about all the things I wanted him to experience in life…simple things, like seeing an ocean sunset, listening to music on Sunday morning with his mommy, playing outside in the yard with his daddy and brother. It did not seem fair that I had to be a part of “twinless” support groups, instead of support group for mothers with twins. Every time I saw a set of twins, or twin strollers, an articles about twins-my stomach fell into knots; knowing that ultimately this was not the life journey I was supposed to have.
Thankfully, even in the center of this tragedy, God has shown me his power, peace, and presence. I will never have all the answers I am looking for, but his holy spirit has given me peace and understanding that has allowed me to emerge from such bitter suffering. I had to let go of what I thought my life should look like, and know that ultimately God has a divine purpose for my life. Although my earthly mind cannot comprehend why I am not supposed to be the mother of healthy twin boys, or why Michael was not supposed to live—I cannot lose faith. I cannot lose hope. Undoubtedly, a life without God is just merely living. What I have learned is, whatever suffering God allows in your life—he has also given you the ability to emerge; with both faith and a future. Paul pleaded with Christ in 2 Corinthians 12 7-9 :
“I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from getting proud. Three different times I begged the Lord to take it away. Each time he said, my gracious favor is all you need. My power works best in your weakness.”
Furthermore, absolutely nothing can separate us from the love that Christ has for us.
“Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity or are persecuted, or are hungry or cold or in danger or threatened with death?” (Romans 8:35).
Although we live in a world full of brokenness; one thing remains the same—the love that Christ has for us is beyond measurable by any earthly means. A sacrificial love—“God demonstrates his own loves for us in this: While we were still sinners Christ died for us” (Romans 5:8).
I am comforted that Michael is seeing things far more beautiful than our earthly sunsets, and he is experiencing the sounds of God’s heavenly orchestra of praise among the angels. He is in the very presence of Christ, and does not have to ever experience the awful heart wrenching pains of this world. He has been spared from the evil that this life has to offer. An amazing author Nancy Guthrie once said, after losing her daughter, Hope, to a fatal genetic disorder….
“I don’t think it is a tragedy that she will have the opportunity to be spared from evil from the pain of this life, and be in the presence of God. This is what I believe. It is not necessarily how I feel. But believing this makes a difference in how I feel.” (Nancy Guthrie, 2005)
It is true, it does not make that ache any less to know that Michael is gone; but knowing that he is in the presence of Christ can change the way I feel.
On Memorial Day this year, Jake, Malachi, & mommy went to Michael’s grave. It was the first time we were all together as a family. It was a very emotional experience, and we spent much time in prayer; and talking with our Michael. Jake and I always refer to Michael as the sun. On sunny days, we always say it is Michael shinning his face on us. It was very warm and sunny that day; and I could almost feel the warmth of his body when I closed my eyes. I imagined his sweet arms embracing me. What a glorious day it will be when we are reunited
Lord, I pray that you would give me a heart that embraces the plans you have chosen for me. We continue to pray for Malachi—and the complete healing of his brain and body. We know that you are working miracles in and through him every day. Thank you Lord for allowing me the absolute privilege to be Malachi & Michaels mommy. It is through you that all precious gifts are given—and my children are certainly the most precious gifts of all.
As I stare at this sweet face I am reminded at how far we have come. I am brought back to the day I first laid eyes on Malachi and Michael…so small, fragile, hanging onto life by a thread. I felt like my heart could burst with love, and i remember crying out to God, “please don’t take my babies from me” with tears streaming down my face. I remember the day the doctor came to me with a box of tissues in hand and told me the news that my child had a severe brain bleed. I remember feeling like i was drowning and that the very air was knocked out of me as she reviewed the possible outcome for my child. She so calmly said “some parents choose to peacefully let there children die” after referring to the quality of life Malachi might have. And she added “at least you have Michael.” Our hearts felt like they were going to burst as we sank down in the floor of the hospital and cried in our despair. I asked Jake “where do we go from here” as i felt my entire body trembling. After several moments of utter despair we decided that we were going to just trust the Lord and the plans he had for us. We were going to fight for our babies lives, and lean on Gods word even when we didn’t see a light at the end of this deep dark tunnel.
I held Malachi later that week for the first time, not knowing if it would be the first and last time I ever held him. I wept, trying to remember the way he felt in my arms, the way his little head smelled. I find myself now trying to remember every detail of Michael, and how he felt when I held his little hand or the little noises he would make while on the ventilator. But in that moment I thought, if one of my children wasn’t going to survive, I thought it would be Malachi. But God chose a different path for Malachi- a path toward healing, a journey towards life, and life abundantly.
I don’t know exactly the capabilities or deficits that Malachi may or may not have, but I know that I serve an awesome God that has brought Malachi this far for a reason. Malachi brings me more joy than I can express, and I claim healing over his mind and body.
On this Easter Sunday we are celebrating Gods love in a small hospital room in the special care Nursery at Vidant Medical. We choose to not focus on the negative, but instead how far we have come. We remember Michael with a heaviness in our hearts, but we rejoice that we knew him, and he knew us. Words cannot express the grief we bear, but we know he is seated in the arms of my risen savior. Today we thank God that Malachi is out of the NICU and in an intermediate care unit. He is gaining weight and bottle feeding. The NG tube was removed yesterday and will stay out as long as he takes 30 mls every 3 hours. He is on 1/2 liter of oxygen, but hopefully in the coming days they will try him off of it. He is receiving occupational and physical therapy weekly. Because he is premature, he has bradycardia sometimes during feedings ( drops his heart rate dangerously low) he forgets he has to suck, swallow, and breath… and sometimes he clamps down, holds his breathe and turns blue… which is very scary for mom and dad. Most importantly we need prayer for his brain and shunt functioning, his development, and his lungs.
Malachi continues to fight, and we are so blessed to see his progress. Each day is still hard, but this little boy just melts our heart and fills us with gladness.
I always feel a little perplexed when people say “Allison you are so strong”…i almost want to laugh and say,” i am the farthest thing from strong“. Most days I have felt overwhelmed in weakness, and overcome by sadness. I am not strong, but I am tethered to an almighty God that is so very strong. Like an anchor he keeps me grounded, like a steal beam he keeps my head held high, like a raging storm he keeps pushing me forward. I saw an image of a tree the other day that had been cut down to a little stump. From the ground the tree looked lifeless, cut off, and broken…but below the soil there were large roots that clung deep into the depths of the earths soil. I felt like i saw myself in that little tree. Broken, and helpless- but with unseen roots that run deep…grounded by the grace of God. I learned through this journey that Gods grace is sufficient. His grace is enough for whatever suffering he allows into our lives. Not just enough to survive, but enough to equip us to EMERGE from our suffering; with faith and hope for the future.
Hebrews 12 1-2 Let us run with endurance the race that God has set before us. We do this by keeping our eyes on Jesus, on whom our faith depends from start to finish.
Raising Malachi 