But for what purpose?

March 30, 2016March 30, 2016 MalachisMom5 Comments

There are moments in our life that we will never forget for as long as we live.

Mine is the moment that I watched the pinkness drain from his body.

“He is with Jesus.” Those are the only words I could utter from my mouth as his heart beat dropped to zero. And in that moment my baby boy-my life-was gone. My heart shattered into a million pieces.

I felt a part of me die with you that day, Michael.

I remember how they removed your ET tube, and all the life sustaining equipment from your lifeless body, and how you laid so still in my arms. So cold. Yet, so beautiful. Like a sleeping angel in my arms, covered by my tears which fell on your delicate skin.

And in that moment, all the dreams and plans I had for you; all my hopes, vanished.

My heart poured out in mourning as I spent my last moments with you. As I tried to remember every detail of your perfectly woven body.

I couldn’t comprehend it all. How did we get to this point?

My hands were shaking as I handed you to the funeral personnel, and then as I begged for her to let me hold you one last time. The last time my eyes would fall on you. My last touch of your skin. My last smell of your hair. “Take it in Allison, don’t let this moment go,” I pleaded with myself. “I love you Michael.” “I love you, I love you, I love you.” It was the only words I could form.

My body was numb. Grief overtook me like a raging storm. And I had to deal with the burning question that fired through my mind and pierced my aching heart… But for what purpose?

Why my child? Why me?

These are the questions we must deal with when circumstances in life seem unfair and we feel broken and alone.

When facing the devestating loss of a child, or raising a child with disability or any ailment, we often feel abandoned. Our faith is tested, and our response to these burning questions reveal a lot about what we believe and who we believe in.

I will never forget the morning of Michael’s funeral, and watching healthy children running and playing so carelessly before me. And how bitterness filled my heart as I didn’t understand why Michael wasn’t given the opportunity to live.

And at the same time my mind wondered to Malachi, whos weak body lie fighting to stay alive in a glass covered isolate. “His life will be less than quality IF he lives.” The words of that doctor stung like salt to a wound. In my mind I battled with this reality before me.

In the midst of all my fears, grief, and questions I hide upstairs in my old bedroom that morning at my parents house. I laid on the floor in a pool of tears until my husband came and found me. And together we gathered the strength to go and speak at Michaels funeral. To give him the love and respect he so deeply deserved.

In those days, weeks, and months following Michaels passing, I was in a state of utter despair and darkness. I was numb. Then I was angry. Every part of me ached.

I really wrestled with God over the plans that he choose for my life. In my earnest despair, I longed for answers.

In my search for comfort, I remember turning to the cross.

I began reading Hebrews 5:7-8 and seeing how Jesus, when facing the cross cried out to God the father-who had the power to make another way…but chose not to. And how Jesus submitted to Gods perfect plan. A plan that included suffering and death.

It helped me to know that even Jesus Christ questioned the plans that God had for him. I knew that I was not alone in my feelings of great anguish. It was in loneliness that Christ called out “My God my God-why have you forsaken me?” in Mathew 27:46.

But Christ followed through with the plan. A plan that would bring you and me salvation and eternal life.

It is because HE LIVES that it’s not over. Michael and I will reunite again. I will smell his hair and feel the warmth of his embrace. It’s not over. It’s not over yet.

You see, Jesus took my place even though I am so undeserving. He gave it all for me, and for you.

And when death had a hold of Malachi’s life, Jesus breathed life into him. He gave him life; abundant life.

And while the future is still at large hazy and filled with uncertainty, I look to the Father to get me through each day. I don’t have to carry the weight alone.

When I feel overwhelmed with exhaustion because of therapy sessions, evaluations, and doctors appointments. When I feel like I can never take a break because if I am not working on one of Malachi’s goals and milestones, then he might not have the best chance at life. When intense anxiety and fear of the future sneaks in to steal my joy, I shift my focus to the one who gave it all for me.

I count my blessings, big and small. I feel so blessed that Malachi is starting to eat more. That while a month ago Malachi would vomit 1-10 times per day, and would gag at the slightest texture of food, that he is now eating several ounces of baby food, and starting to eat table food and drink from a straw. That he is gaining weight, and has a desire to eat! That while he has high tone in his legs, he can crawl and climb stairs, and I have no doubt in my mind that he will walk one day. And while Malachi a few weeks ago never uttered a sound, my boy now says dada with such clarity, and babbles with intent. It may not seem like much to you, but to hear my sons sweet voice brings tears of joys to my eyes. And even though Malach doesn’t say mama, he melts my heart when he lays his head on me when you say “give mommy love.” He knows me. He is doing things I only dreamed he would be doing. I have to remind myself that even though I can feel so full of doubt and anxiety, there is so much to be thankful for. So much to live for.

It is through His mighty hand that Malachi is alive. That while he may struggle in some areas of his life, he is progressing. He is thriving, and full of so much joy. I feel like I can see the very presence of God shining through him when he overwhelms me with his sweet and all consuming smile.

I often pray for continued healing over Malachi, but more than anything I want him to know the love of Christ. To know of his grace, and his mercies.

We still have a long road and many unanswered questions ahead of us. But through the uncertainties of life and pain, I remember Romans 8:28 when God states that he causes everything to work together for the good of those who love him and are called according to his purpose.

If you have ever been so consumed with those burning question, and are searching for purpose and understanding in your pain, I want you to know that you are not alone.

In my search for clarity I will never have all the answers. I don’t know why Michael needed to leave this earth so soon. I don’t know why bad things happen to good people. Why innocent life is shed. And families are torn apart. And while I believe nothing comes into our lives that does not first pass through the sovereign hands of God-I know that we live in a world where sin has taken root and corrupted everything.

We live in a broken world. A world full of sin, sickness, genetic dispositions, and disease. And the world will continue to be broken until the return of our Lord and Savior.

But even in your pain, when life seems to be in ruins, your brokenness can be the pathway to usefulness. In fact, Jesus Christ showed what it meant to be broken and used by God in both painful and beautiful ways when we gave his life on the cross.

And so I kling to his promises. I choose to not focus on the temporal things of this Earth and to keep my eyes on everlasting things.

I also bind with those individuals who have walked similar journeys, who have been there and overcome. Their support and love gives me so much strength during the moments I feel like a plane that is spiraling out of control.

And finally, I write. Writing for me is my outlet. It is the way I heal and mend those deep wounds. Thank you for letting me share my heart with you-my vulnerabilities and my pain. We need each other to heal, grow, and love.

A letter to my son on his first birthday.

December 29, 2015December 29, 2015 MalachisMom3 Comments

Dear precious Malachi,

My world stood still the first time I laid eyes on you. In fact, if I close my eyes I can still see your fragile body just as vividly as I could a year ago.

This image always stands out in my mind when I feel worried about what the future holds for you. I think about how far you have come…the mountains you have overcome, and the progression we have seen.

God has certainly had his hand on you from the start.

It always amazes me to think that the God of the universe heard our pleas and cries, and choose your life to spare.

A year ago I couldn’t touch you, or talk too loudly in your presence. Instead, we filled your room with whispers of lullabies, and quiet streams of tears as we pleaded with God to save your life. With every odd and statistic telling us that each second may be your last, we stayed by your side. We believed in you, even when a reality of a life with you seemed unrealistic and unattainable.

With each new diagnosis, including an intraventricular hemorrhage and resulting hydrocephalus, our hopes of a future with you seemed more bleak. And yet, after 6 weeks on a ventilator, 137 days in the hospital, 2 brain surgeries, 1 abdominal surgery, and what seems like a thousand barbaric eye exams, needle sticks, and doctor appointments later…here you are!

It is with so much gratitude and grace that we celebrate your first birthday.

Time has been so surreal this year, with those early days in the NICU seeming to drag on so painstaking slow, as we rejoiced in every second that you remained here on this Earth with us. And yet, I feel like this year has come and gone so quickly…with the highest of highs, and lowest of lows.

Throughout this year you have shown us your strength and perseverance to live. Even through all the pain you have been through, you remain so full of life and delight. You are our number one hero, and the child that we prayed for with such vigilance.

You have impacted this world so greatly in just this short first year. You have had so many people praying for you, people that you have never met. Complete strangers and people from all across the world lifted your name up in prayer.

You have restored people’s faith, and made us believe that miracles really are possible. That all things are possible in Christ.

Because of your birth, your mommy and daddy have been forever changed. We see the light of God shining down on you with each passing day-and we feel so privileged to call you “ours.”

And to think-this is just the beginning.

We enjoy every moment of watching you grow. Even with all the fears and worries, we know that you will grow to be the exact person that God has intended you to be.

We are so proud of you.

We know that your brother is looking down on you and smiling. He is living and breathing in and through you. I can sense his presence when I hold you close.

You are the little boy that wasn’t supposed to survive. The boy whom was deemed to live a life that was “less than quality.”

But God had a greater plan.

You are my smiling, cuddly, lovey boy. The boy that loves peek-a-boo, and laughs with such jubilance. The most determined boy, who pulls up on everything. Who is fearless-and crawls around, despite having high muscle tone in his legs and arms.

You amaze me Malachi.

I love you so much. I REJOICE in you today and every day.

Xo,

Mommy

My precious Michael,

I watched balloons rise high to the sky today, to wish you the happiest of birthdays in heaven.

I held back sobs of tears as a heaviness fell on me. I thought, “he should be here.”

But even in the midst of all the emotions that I am feeling today, as I relive your birth, I can’t help but smile as I think of the first time I saw you.

11:08 p.m. 1 lb 6 oz of pure sweetness.

Your delivery was not easy. It was full of tears, and crushing pain; but being able to give birth to you was worth everything.

I feel so privileged that God handpicked me to be your mother. To carry you in my womb, and give birth to you and your brother. Even though your life here on Earth was painstakingly too short, it was also meaningful.

I don’t understand why it all happened the way it did, and why we have to remain so far away…but I will always love you with an intensity beyond belief.

Forever I will grieve you, but especially on this day…December 28th.

Sometimes I wonder if God allowed you to live and then die so that I could be used as his vessel. So that such depths of pain and brokenness could then be turned into usefulness for the kingdom of God. It doesn’t take away the pain and void that I feel as your mother, but knowing there is purpose in your existence helps to shed light to my aching soul.

I am forever changed because of your life. I love harder, and feel deeper. Heaven feels closer, and this finite life seems so brief. For I know that this is not my home. No…Home is with you. You are where we all long to be.

I want you to know that I am so proud of how hard you fought in the NICU. You were a little rock star, who had all the doctors blown away by your will to live. And like a thief in the night, infection and sepsis snuck in to steal my little bundle of joy…My life…my baby boy.

YOU Michael are just as precious to me now as the day you were born. It is with such tenderness and affection that I dwell on your life today and always.

Thank you for making me a better person. Thank you for living long enough for me to love on you, to hold you, and tell you how wonderful you are. I truly believe that God allowed you to live those 3 weeks for your daddy and I. We needed to know you. We needed to hold you, and love you, and feel a part of your life.

I’ll never forget the warmth of you on my skin, and how your touch melted all my fear away. I never stopped believing in you. Even in your last seconds of life, I hope it was evident to you the depths of my love. A mother’s love is the strongest love there is.

You are not just a statistic. You are my son. My baby. And I will never get over the loss of you. But it is with such great honor that I call you MINE.

My wish for you today on your first heavenly birthday, is that your life and legacy will be remembered. That your memory will leave a lasting mark on all who knew you and took care of you.

I love you Michael. Forever my baby you’ll be.

Xo,

Mommy

8 month old Malachi: A Micropreemie’s Story.

August 30, 2015August 30, 2015 MalachisMom5 Comments

“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 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 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.

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!

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.

Broken Seashells–A micropreemies first time to the beach.

July 19, 2015July 19, 2015 MalachisMom6 Comments

“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!

Malachi enjoyed napping with mommy. He is such a snuggle bunny.

Tummy time pool side. YES, we do therapy even on vacation. :) — Tummy time pool side. YES, we do therapy even on vacation. 🙂

The pool wasn't my favorite. But I am still precious. — The pool wasn’t my favorite. But I am still precious.

First night out for dinner at the Sea Captains.

I wish I could give you an update on Malachi’s weight, but he hasn’t been weighed since his check up on June 30^th. 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.

Love,

Mommy

Showing Malachi that life can be JOYFUL

July 2, 2015July 2, 2015 MalachisMom2 Comments

“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.

First time getting in the pool at Grandma Stone's house. — 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)

Finding Joy & Learning to Love after Loss.

June 27, 2015June 27, 2015 MalachisMom2 Comments

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.

Easter Sunday 2015

June 8, 2015June 8, 2015 MalachisMomLeave a comment

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.

Journey to Home-a post from May 17th, 2015

June 8, 2015June 8, 2015 MalachisMomLeave a comment

I posted this picture as a reminder of how far my Malachi has come.

Malachi was discharged from the hospital after spending 137 days at Vidant Medical, with the majority of this time being in the Neonatal Intensive Care Unit. If you are unfamiliar with Malachi’s story, here is a quick background..

Malachi and his brother Michael were born on December 28th 2014 at Vidant Medical Center, at only 23 weeks gestation. My precious boy Michael lived 3 weeks, and then passed away after suddenly becoming septic (I will share more about this experience when I feel that I am emotionally ready). Furthermore, Malachi; whom the doctors often referred to as the “sicker twin” beat the odds, and is now at home with us. This journey has been more difficult than I can put into words. It is hard to express the grief and burdens Jake and I have had to bear. Malachi has several medical conditions due to his prematurity. His most prevalent medical condition is an Intraventricular Hemorrhage that he developed shortly after birth. Hemorrhages are graded on a scale of 1-4 with 4 being the most severe. Malachi sustained a bilateral grade 3-4 bleed (meaning some of the radiologist interpreted it as a 3, and some said it was a grade 4. The bleed was not only in the ventricles of his brain, but in the white matter of his brain as well, putting him at high risk for developmental and cognitive delays, as well as cerebral palsy. Due to his IVH, Malachi also developed Hydrocephalus, and had to have two surgical procedures-a reservoir to drain spinal fluid from his ventricles, and a VP shunt when he was older to drain the spinal fluid from his brain to his abdomen. Malachi’s most recent MRI also showed that he has mild PVL, which is essentially a area of dead brain matter around the ventricles of his brain due to the bleed he sustained. This is just another reason why the doctors are worried about Malachi’s brain and functioning. Malachi also has a chronic lung disease called BPD from his prematurity, as well as being on the ventilator for 6 long weeks. Malachi has Retinopathy of Prematurity (affecting the retinas of his eyes) and a open PDA in his heart that will either close on its own or will need surgical intervention later in life. He also has anemia and a very severe form of reflux. He is on medication therapy and has special feeding needs. Malachi had several scares during his NICU stay, many of which left him holding onto life; but he managed, with the grace of God, to pull through. Each day is still a learning experience for Jake and I as we try to take care of our sweet boy, but God has given us patience, strength, and endurance that we did not know existed within us.

The long awaited homecoming…

Malachi came home on May 13th, 2015. After spending 2 days off the monitors, and an overnight stay in the hospital, Jake and I were cleared to take our special boy home. As soon as we got to the hospital that day, I almost felt sick to my stomach. This was definitely not the feeling I expected to have the day I took my baby home; but, so many things were running through my mind. This hospital room was my LIFE for so long, and I was fearful of what life was going to be like outside the safety of monitors, and 24 hour nurses and doctors. I thought “God, I can’t make it without your guidance today.” As the nurse reviewed our discharge instructions my anxiety began to rise. Reviewing his medical needs, follow up appointments with specialists, and medication regimen seemed daunting. It is scary enough taking home a healthy newborn, but taking home a baby that has special needs adds even more nerves. I tried to put my fear aside of me. We dressed Malachi in the most precious white outfit with a bib that said “I prayed for this child.” One of the nurses said “he looks like an angel”…and I could not have agreed more. We took a quick visit to the NICU before saying goodbye, and again-just seeing the NICU brought back a flood of emotions. We saw one of the Nurse Practitioners that used to drain fluid from his brain each day to relieve pressure from the rising levels of spinal fluid. We also saw one of the nurses that took care of him on his second day of life-when we didn’t even know if he would live to see the next day. Each person I saw held a memory, a vivid reminder of how far my Malachi has come. I wanted to pinch myself, as it did not feel real to me that we were actually taking him home. As we walked to the car, my heart was pounding. The nurse, Jill looked at me with tears in her eyes and we stopped and said a prayer. A overwhelming feeling came over me, as I cried out to God in my spirit for strength for the coming days. This is the same nurse that came to me a few days prior in tears as she said

“I remember feeling overwhelmed when my children got ear infections or colds; you have so much more on your plate. But, God equipped you to care for Malachi. He has a plan and a purpose.”

She told me that it is easy to not enjoy the good things in life because you are so focused on the next journey, or the next fearful battle; but she reminded me to enjoy this moment in time with my son. Thank you Jill for reminding me to take each day one by one, and to focus on each blessing the day brings; you have impacted my life greatly.

As we were leaving, I began to to think of Michael, the baby that should be in the car seat beside us. I looked at the sun, and for a second I felt like Michael was smiling down on us as if to say “mommy it is going to be ok.” Malachi slept most of the way home, but once we turned on our road his little eyes peaked open as if he was thinking “this is not my hospital room.” He looked confused as he tried to figure out what exactly was going on. We were welcomed home with a big banner that said “Welcome home Malachi” and an array of ribbons to adorn our front porch. This was when the sheer joy began to sink into my inmost being. A sign of relief…we Are truly home! Malachi had a wonderful day that afternoon, and he seemed to be very intrigued with his new surroundings. We ended the day with several good night time kisses, snuggles, and a prayer of praise and thanks to our heavenly father. He is home, he is finally home!

Although the road ahead still seems frightening, I am comforted by the almighty comforter, who remains faithful in guiding our steps. Malachi still needs a miracle from God. During his developmental assessment the PT said his legs and hips were stiff, and he scored slightly below normal for his corrected age. If you read my son’s medical history on paper it seems overwhelming, but my God is limitless in his resources, and his healing power is being shown in and through Malachi. I serve a mighty God, and thankfully nothing is too difficult for him. One of the doctors told me that I can’t focus on the “what if’s” about Malachi’s future, and that I need to let that burden go. It is true, focusing on the unknown can drive oneself mad. I have to give it to God, although easier said than done. Please join with me in praying for Malachi. Pray specifically for Malachi’s growing and developing brain. Pray for his hydrocephalus, and shunt functioning. Pray that the PDA in his heart will be closed and not need surgery for correction. Pray for his lungs, that he will be able to breath, and not get so easily short of breath. Pray for his eyes, that his vision will be completely restored. Pray for his stomach pains, and reflux, that is so severe that he vomits. Pray for continued strength for mommy and daddy as we venture into the world and go to several doctor appointments. Pray that Malachi will not get sick, for we know even a minor cold could be deadly in our little fighter. Thank you for your love and support through this journey.

As you venture throughout your week, focus on Deuteronomy 30 19-20.

“Today I have given you the choice between life and death, between blessings and curses. I call on heaven and earth to witness the choice you make. Oh, that you would choose life, that you and your descendants might live! Choose to love the Lord your God and to obey him and commit yourself to him, for he is your life.”

It would have been easy for me to sleep away the pain when Michael died, or to refuse to truly live after finding out the prognosis of my son’s brain bleed; but I want to choose LIFE! When you have lost your joy, and your life seems to be engulfed in sorrow, look to the heavens for your strength. There is a land of blessings that God wants you to have, but he also disciples those he loves. We live in a world full of hardship and trouble, but thank you Lord that we have a hope and a future in you. Could it be true that the plan God has destined for your life, although it is not as you thought it would turn out, could actually be better than you could imagine for yourself? Choose life this week. May God give you eyes of faith so that you can see how satisfying life is when we die to ourselves, and choose to live for Christ. Thank you for your Prayers and love for Malachi. We love him SO much.

Picture credits to Quiver Tree Photography

Raising Malachi

Prematurity, Inspirational, micropreemie, 23 weeker, Loss of Twin, Faith

Tag: Prematurity

But for what purpose?

A letter to my son on his first birthday.

8 month old Malachi: A Micropreemie’s Story.

Broken Seashells–A micropreemies first time to the beach.

Showing Malachi that life can be JOYFUL

Finding Joy & Learning to Love after Loss.

Easter Sunday 2015

Journey to Home-a post from May 17th, 2015

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