With everything going on these past few years, it is hard to fully explain or tell everyone all that has happened. There is just so much! There are so many details in every day. A lot of times I was in a fog and just cpuld not function or comprehend.

There  were moments while I was pregnant that I had to come to terms with the fact that I may never see my son alive. I may never know what he will look like at 6 months old, a year, 5 years, 12 years or even as an adult. I will never get to sing to him and see him smile at me and try to engage in our dance of fingers to itsy-bitsy spider.

There were moments during the three days of labor that I thought ‘this is it’. This will be the last time I hear his heartbeat. I thought these are the last days that I would have a son that is alive and with me. Moments that I begged God to have mercy on my heart and let me just see what he looks like alive. Let me touch him. Let me smell him. Let me see whose nose he has or hair he has. Let me see if he has his daddy’s lips or my big ears. What skin color will he be? Please, Lord, let me just see.

There were several moments that we were told “we’ll see“. We’ll see if he tolerates this. We’ll see how he acts. We’ll see what his body does. We’ll see if he can handle this. We’ll see if he survives the day. We’ll see if he survives the night. We’ll see… Like a child asking her mother if she can have a toy from the store…. we’ll see. Hoping, waiting, praying and being on my best behavior… we’ll see.

Then there were moments after his birth when I was told to hold him, because it just may be the last time. Take pictures, because it may be the last time. Write in your journal, because it may be the last time and you will want to remember these moments.

But through all of this… my son is alive. He is still here. He has surpassed all expectations from every doctor we have ever met. And I give it ALL to God. I wholeheartedly believe to my core that it was God that made it all happen. These were all His miracles. This was all for God to get His Glory. This was all to show the unbelieving to believe. This was all to make the non-praying people to say a little prayer. This is what happened. Matthew helped in God’s plan in bringing people to God. Letting people witness amazing miracles.

But God has different plans for every individual person. Every mom, dad, child and baby…. they each have a different path that they will be on. Some will live long lives and others won’t.

I have several “friends” who have babies with the same diagnosis as my son. And unfortunately some of those babies have passed away. But we have continued to be friends and follow each other’s lives through social media. But there is a point in our “friendship” that I have had to draw a line.

The line for me happened a couple of weeks ago when my son became very ill. Doctors were telling us some not so good news already about his prognosis and quality of life. Then to add this new sickness. It was an overwhelming time for me.

I can only imagine the pain of losing a child… excruciating. I can understand all that comes with losing a child. And I understand that at some point anger floods through your veins….

I have lost one baby through miscarriage. But i have never lost a child through birth or infancy. I can only imagine the pain of holding your child then losing them. My husband has done that with a child he had. He still suffers from that loss. And he will hurt from that for the rest of his life.

But ….how could someone who has lost their child, lash out on someone who is currently caring for a very sick baby who HAS the same diagnosis of your child?

That is something that I don’t understand. Being angry with me because my son has survived this disease this long…… crazy!! I have total faith that he will live a very long, complete and happy life.

I am going to be completely honest here… I do NOT apologize for my faith!! I will continue to SPEAK LIKE. I will continue to SPEAK TRUTH. And I will continue to BELIEVE in God’s Promises. Believe in His Miracles!

I understand we are all on our own journey. Every journey, every life, every experience is different with different extremes of health. But when I receive bad news I will continue to give it to God. I will continue to endure what we need to endure but I will give my worries to God.

I will never ever apologize for the kind of faith that I have. I don’t know why some babies die and others survive. I don’t know why Matthew has to go through all of this. And I dont think I will ever fully understand it. But what I do know is that God has a plan. God knows there is a purpose for all of this. God knows that Matthew is here for a reason. And all that I can do is TRUST. Trust in His plan, Trust in His Promise. And all I can do is keep praying and believing and building my relationship with God. Because whatever else comes my way, I will need Him.

So, I will not apologize for my faith because it upsets someone else. My faith has gotten me through the worst days of my life. And I know it will get me through whatever else is to come.

Sorry not sorry.

xo