I have to apologize for my last night's entry.
I ranted and raved about things that really are not that big of a deal. Were they annoying? YES VERY. At this point in my life though you would think that I would have learned to not sweat the small stuff.
God has been trying to teach me patience for the last four years. While I am much more patient than I was before I had Makily, I obviously need more work. My mom and I were talking about it today. When it comes to Makily I have ZERO patience for people who get in the way of her getting the testing she needs or the supplies she needs. If Makily has to be inconvenienced AT ALL and it's someone else's fault well let's just say you better get out of my way. It won't be pretty.
I try but I need to try harder to have more patience.
What's made me think twice about my last entry is a little baby boy named Jack.
I was directed to his "story" by another special needs parent. Since having Makily I have followed many other babies and children with special needs. Some people think I am crazy but I am in awe of these children. How they fight with amazing strength and also how their parents learn to adapt to their "New Normal". Sometimes the story has a sad ending and it does affect me. My heart aches for the families that loose their child after fighting so hard to keep them here. Their lives always touch me though because it makes me appreciate each day...each moment I have with Makily even more.
Jack is a triplet. He has two sisters. They were born early like most multiples. His sisters did pretty well and were able to come home fairly quickly from the NICU. For some reason Jack could not seem tolerate weaning off the ventilator. The doctors began looking for reasons why. They started pointing out small abnormalities they saw in Jack (which by the way did not affect what a gorgeous little boy he is), which prompted them to test him for many different syndromes.
The days leading up to his diagnosis his mother described a feeling of constant dread. It struck me as I read along because I recall that same feeling in the days before Makily was diagnosed with Emanuel Syndrome. I KNEW something was VERY wrong with Makily and not knowing was torture...the waiting....the wondering....the anxiety, it was just suffocating. I felt a connection to their story in a way because we had NO IDEA anything was wrong with Makily until she was born. We were blissfully unaware how hard things were going to be once she was born. We had no idea that our life was going to drastically change. I look back at that time in my life and it's all such a blur. It was like I was watching someone else's life unfold. Like an out of body experience.
On top of that Jack's family had two other newborns to take care of. One of which most likely they found will need heart surgery.
Jack was diagnosed with Mobius Syndrome. He had a pretty severe form and the doctors were pretty sure that his breathing issues would never resolve. The doctors were going to try a few things to get his lungs functioning better and see if they could get him off the ventilator. Unfortunately Jack started having serious oxygen desaturations, his heart rate had become unstable and he passed away in his mother's arms last Wednesday.
I can't imagine the pain his mother and father were feeling.
I have watched Makily lie in the hospital on a ventilator more times than I would like to remember. There were days I sat staring at her and crying wondering how many more times I would have to see her that way. The thought of leaving the hospital without her in my arms brings me to my knees. When she is inpatient I don't leave her....not for more than an hour or two. It's too hard for me. I dread what may happen while I am gone.
Jack's family has inspired me. They are at peace with what has happened. As at peace as one can be in such a tragic situation as this. They know Jack was sent here to change lives and touch hearts. He touched SO MANY in his short time here. He did the job God sent him to do and his time here was done.
After reading the entry his mother put up today I was ashamed for my last entry. Monday was a rough day but my baby is still here. Makily is stable and healthy and full of so much joy. She makes me a better person, she too has touched many in her young life...and I know she will continue too. We are so blessed.
Rest in peace sweet Jack. You may be gone but are not forgotten little one. Thank you for reminding me what is important in this life. I will hug Makily a little tighter tonight and know that God has yet another one of his special angels watching over her now.
Megan, PJ and all of Jack's family...you are in our prayers.
Held
by Natalie Grant
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we’d be rescued?
What has changed and why should we be saved from nightmares?
We’re asking why this happens
To us who have died to live?
It’s unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.
This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to Lilly's of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.
Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held
I ranted and raved about things that really are not that big of a deal. Were they annoying? YES VERY. At this point in my life though you would think that I would have learned to not sweat the small stuff.
God has been trying to teach me patience for the last four years. While I am much more patient than I was before I had Makily, I obviously need more work. My mom and I were talking about it today. When it comes to Makily I have ZERO patience for people who get in the way of her getting the testing she needs or the supplies she needs. If Makily has to be inconvenienced AT ALL and it's someone else's fault well let's just say you better get out of my way. It won't be pretty.
I try but I need to try harder to have more patience.
What's made me think twice about my last entry is a little baby boy named Jack.
I was directed to his "story" by another special needs parent. Since having Makily I have followed many other babies and children with special needs. Some people think I am crazy but I am in awe of these children. How they fight with amazing strength and also how their parents learn to adapt to their "New Normal". Sometimes the story has a sad ending and it does affect me. My heart aches for the families that loose their child after fighting so hard to keep them here. Their lives always touch me though because it makes me appreciate each day...each moment I have with Makily even more.
Jack is a triplet. He has two sisters. They were born early like most multiples. His sisters did pretty well and were able to come home fairly quickly from the NICU. For some reason Jack could not seem tolerate weaning off the ventilator. The doctors began looking for reasons why. They started pointing out small abnormalities they saw in Jack (which by the way did not affect what a gorgeous little boy he is), which prompted them to test him for many different syndromes.
The days leading up to his diagnosis his mother described a feeling of constant dread. It struck me as I read along because I recall that same feeling in the days before Makily was diagnosed with Emanuel Syndrome. I KNEW something was VERY wrong with Makily and not knowing was torture...the waiting....the wondering....the anxiety, it was just suffocating. I felt a connection to their story in a way because we had NO IDEA anything was wrong with Makily until she was born. We were blissfully unaware how hard things were going to be once she was born. We had no idea that our life was going to drastically change. I look back at that time in my life and it's all such a blur. It was like I was watching someone else's life unfold. Like an out of body experience.
On top of that Jack's family had two other newborns to take care of. One of which most likely they found will need heart surgery.
Jack was diagnosed with Mobius Syndrome. He had a pretty severe form and the doctors were pretty sure that his breathing issues would never resolve. The doctors were going to try a few things to get his lungs functioning better and see if they could get him off the ventilator. Unfortunately Jack started having serious oxygen desaturations, his heart rate had become unstable and he passed away in his mother's arms last Wednesday.
I can't imagine the pain his mother and father were feeling.
I have watched Makily lie in the hospital on a ventilator more times than I would like to remember. There were days I sat staring at her and crying wondering how many more times I would have to see her that way. The thought of leaving the hospital without her in my arms brings me to my knees. When she is inpatient I don't leave her....not for more than an hour or two. It's too hard for me. I dread what may happen while I am gone.
Jack's family has inspired me. They are at peace with what has happened. As at peace as one can be in such a tragic situation as this. They know Jack was sent here to change lives and touch hearts. He touched SO MANY in his short time here. He did the job God sent him to do and his time here was done.
After reading the entry his mother put up today I was ashamed for my last entry. Monday was a rough day but my baby is still here. Makily is stable and healthy and full of so much joy. She makes me a better person, she too has touched many in her young life...and I know she will continue too. We are so blessed.
Rest in peace sweet Jack. You may be gone but are not forgotten little one. Thank you for reminding me what is important in this life. I will hug Makily a little tighter tonight and know that God has yet another one of his special angels watching over her now.
Megan, PJ and all of Jack's family...you are in our prayers.
Held
by Natalie Grant
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we’d be rescued?
What has changed and why should we be saved from nightmares?
We’re asking why this happens
To us who have died to live?
It’s unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.
This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to Lilly's of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.
Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held
