*Isaiah 40:31 -But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.
Quality of Life.
This has been a hot topic in Matthew’s life since before he was even born. On days when ‘termination’ was brought up, the conversation would quickly turn to how his quality of life would be if he were to survive. And I remember telling these doctors, who were so discouraging, to let me, his mother, worry about his quality of life. Let me make sure he has a great quality of life. I just needed these doctors to use the skills that God gave them and get Matthew alive and strong.
I never gave two thoughts to what Quality of Life really meant. I never second guessed myself when I said that “I would handle his quality of life.” I never thought anything of it. I just said that Matthew’s life would be great and that that was up to me and his father. I told doctors, “I just need you to get him healthy. WE will take care of the quality of life.”
That phrase… Quality of Life…. it’s a simple little phrase. It’s not threatening in any way. It’s not long and drawn out and it isn’t confusing. It’s a really simple phrase. You can say it over and over again and you will never notice or truly understand what this phrase means. Not unless you have a sick baby. When you have a sick baby, this phrase is thrown around a lot.
The future of so many baby’s has been based on parents ideal or thoughts about Quality of Life.
>Your baby may have cerebral palsy…. think about their quality of life.
>Your baby may never walk… think about their quality of life.
>Your baby may never be off of this machine that breathes for him… think about the quality of life.
Your baby may never be able to play, or smile, or sing or even know what happy is… but think about the quality of life………
Here we are… two years later… and I am finally seeing what the doctors meant about Matthew’s “quality of life”… we were hit with a list of things that Matthew will continue to have to endure throughout his childhood. It was like a punch in the gut. Although we have known about these issues he would have, it never really resonated with me until his doctor said it again. His doctor confirmed it. I was sad hearing about it again. A little piece of my heart broke again. The things that my son will have to endure on a daily basis…. it’s not fair. It will be painful, it will be traumatizing to him and me. Just the thought of the whole thing traumatizes me already. The anxiety has built up in me already….
I know I will be able to be the mom that Matthew needs. I am mom, I am mama, I am Mama Bear. I have this. I got this. It is handled. Matthew will get through this. And because he will get through this, so will I. My son is much braver, stronger and way more awesome than I will ever be. I stand behind him!!
Life is short. Life is precious. And we plan to keep giving our son the best and most incredible life God allows.
Quality of Life…. it truly is what you make of it.
To God Be The Glory