Moment by Moment

I almost lost it today. We have been doing so well in this waiting period between appointments and waiting for the next test and surgeon visit. I am truly grateful for God allowing so many distractions to help us get through these days. It hit me this morning on the way to work though. Random thoughts in my head about the day ahead – work to do lists, meetings, to do list at home, work meetings again, “wait what day is it?…Oh my goodness…..It is Thursday – which means tomorrow is…”...My stomach started churning, the lump came into my throat, panic, breathing… Ok so I didn’t almost lose it – I DID lose it. Okay (telling myself) just focus on the music, on the words, on God’s presence. But all of a sudden it felt like the day we found about MJ’s brain malformation all over again. I realized – I want answers but I don’t know if I am ready for them.

Can I be completely candid with all of you? I get a kick out of people and how they try to be encouraging – bless their heart (and I mean that sincerely). I know they are trying to sound positive, or make the situation feel lighter than it does – but you really have to hear it from our side. “Oh they’ll just give him a shunt right – no big deal?” OR “Oh so they can just take a piece of bone out of his skull and that will help?” - and they say in in the most uplifting voice as if “cool well there is your solution simple as that!”. Now don’t get me wrong – We are so incredibly grateful to have those type of people in our lives that can be there to try and uplift us, to encourage us, and to help us count the blessings. We see their hearts in it and we love them for it.

(Being intentional here about being transparent)  - I have to tell you when I talk to people or think about my feelings or write about them I can’t help but wonder – Am I being a total drama queen? Do people think I am being overly dramatic? Because to be honest with you sometimes I even question myself on that. We are told his condition is treatable. We are told most treatments are very successful. But I just can’t get out of my heart the fears I have for my baby.

I just keep thinking about the fact that eventually MJ is going to have to have brain surgery. As routine as it may be – it is still brain surgery. My little 5 year old; the one we fought so hard to have; the one that has had nothing but health problems his whole life. The one we named “Gift of God”.

Then I feel guilty for all of my fears and sadness when I see what another family is going through at church with their son who has bone cancer. I can’t even begin to imagine what they are going through – I know emotionally it must be 10 times worse. And I feel guilty having all of these fears and this sadness when I am supposed to have faith that God will take care of everything.
I just have to tell you when you see me around and you ask if I am okay – in that moment I will probably tell you I am – but as some of you have told me this week you can see in my eyes I am not. I (we) are still scared. I (we) are still sad. We are still stressed. And we are only getting through moment by moment.

And again – I feel like I sound so dramatic – but it is what it is. You can’t change your feelings.

So tomorrow is the day. MRI number two – this time of his spine to check for cysts. God be with us. We need to be strong for MJ right now.