Monday, April 19, 2010

Bam

Our life lately have been a whirlwind. Just when we thought things were settling down...BAM...Malachi has his stroke and then a few days later we were told he has Moyamoy and then...BAM...he will be needing major, MAJOR surgery on his delicate brain. The last few weeks have been trying to say the least, a true test of our Faith. We have felt the entire gamut of emotions. Presently, we are at peace, an unexplainable peace that we can only attribute to God and his ability to carry our burdens when they are to much to do it on our own. Malachi is stable and doing well..for now..blood flow in his brain is still restricted and a stroke is always looming right around the corner but he is happy, he is alive and he continues to improve and we are choosing to focus on that. 

I need to be honest here, although I have come to terms with all that is going on with Malachi...I am still hurting. I am angry and struggling to forgive. No, I am not hurting because Malachi is going though this, I am not angry because God chose our family to weather this storm and no I am not struggling to forgive myself for not catching the signs earlier. What we are going through right now is HUGE, Malachi could suffer another stroke at anytime, a stroke that could end his life and there is absolutely nothing I or any medical professional can do about it. Perhaps you don't understand the severity of this disease or the impact it is having on our family. Perhaps you do understand and you just don't care enough to reach out to us. Perhaps your situation is worse than ours which leaves you numb. Perhaps your life is perfect and you thank God for your healthy children but what would you do if you woke up tomorrow and your perfectly healthy child was laying lifeless? Who would you turn to? Would would you call? How would you react? Would your family be there to support you? How about your friends? Your Church? We have been blessed with wonderful families who have been by our side each step of the way. Our close friends have also been amazingly supportive. But if I am being 100% honest, I have been disappointed. People who I have expected to be there, haven't been. People who say "we are praying for you" yet never call to pray over the phone or meet us at the hospital while we wait for 4 hours to be transfered to another hospital. Yes my feelings are hurt, I am angry and I am struggling to forgive. I am praying for the words to say and that I have a gentle heart when I talk with those people. Please pray for me as I seek God in this situation....


5 comments:

Emily said...

I'm praying for you my sweet friend... I wish I lived closer to give you some support. I haven't been on blogger a lot lately, but I love reading your blog. Your boys are beautiful and they have wonderful parents. Keep holding on to faith...

Kristin said...

I'm sorry. I understand a little. None of my siblings came to see Max in the hospital when he had his heart surgery last fall. I still can't believe it. One lives 10 minutes from the hospital. And yet, a blogger friend I had never personally met, came up and brought a gift! I think sometimes people don't know what to say, so they avoid you. Praying from afar :)

Justin and Cortnie Lueders said...

I'm sure I'm one of those on your "list". Just know I wanted more than anything to be there with you guys and support you, but sometimes life and distance gets in the way of things. I do agree w/ Kristen in the fact that sometimes those around you don't know how to approach the situation or even know what to say, I hope you find peace in that. Miss you guys!

mary said...

Hello, I was sent here by a friend from another Down syndrome board. My daughter also has moyamoya. She was diagnosed 8yrs ago,she's now 13 yrs old and doing great. Please feel free to e-mail me with questions or just for a little support. We've felt the same concerns and lived with what we considered a "ticking bomb"(that's how ti felt before her surgery. It felt lonely and so scary.
Mary Grace
mgrace5@nycap.rr.com

Will, Amanda, and Bryson Bosco's said...

HEY!
I would like to suggest that you have a wonderful gift of writing. Every blog is well put together and very well said! Maybe write a letter? You could still read it to them, but then you will be able to be sure to share your heart with them in a loving peaceful way! Love you guys! Hope the "food" is ok....