Well, I can honestly say that yesterday was not what I expected it to be. The meeting we had with this doctor (and that is all I can call him, because the man had no compassion, no heart) was the worst thing we have ever sat through. This man acted like he didn't care about our child at all. He never even looked her over, assessed her for himself. I believe, to him, she is just another number. How dare he act that way about my child. How dare he breeze in there and act like he was just giving the news no other doctor wanted to give and he was the only one bold enough to say it. If that was the case, then why have all these other surgeons been trying their best to see what can help Ellie. It's just frustrating and it sucks. It just sucks. I can't really explain it any other way than that. I wanted to just scream and at times I still do. My emotions are all over the place at this moment. I go from a feeling of anger and rage, to sad and dissapointed, to just plain numb. I have to and have several times just look up at the sky and go "Why God, why have you chosen Matt and I's family to endure this?" I know He has a reason and in time will reveal it to us. But, right now, I struggle because I just want to know. I just want to know His plan. Pray for patience for me as I seek this. I know His timing is perfect and I need to be patient and wait on that.
I look at our Ellie. Our sweet, sweet Ellie and praise God for the gift of her. This child, is such a blessing in a way I can't even begin to describe. A wife and a mommy is all I have ever wanted to be. This is where I have to look up at the sky again and just cry out to God. I know He hears my prayers and I trust that every day. But, I am human and sometimes I have to wonder why Matt and I have been chosen to walk the road we have these past 16 months. I will never give up on our Ellie. As long as there is something that we can do, that could help her, we will do it. That was the hard and confusing thing about yesterday. This man sat there and told us all of this but then said "But if she continues to improve again, I would look at doing something for her." What are we suppose to think about that!?!?! My feelings, is that the man just can't really explain her. She is different, unique one of a kind. Maybe he was scared. How does he think we feel? What I know, is that this little girl has proven time and time again, that she is strong. Matt and I have to keep believing that.
Do I know what God's plan is right now? No. Will I keep trusting Him day in day out? A thousand times YES!!!! I know Matt and I agree He is the most important thing in our lives and He has helped to keep us going when this world around us is trying to beat us down. God can feel me with a strength and peace at times that I know could only come from Him. There is no other way to explain it.
And to my husband-I am the luckiest girl on earth. I know not all of you are a witness to the love this man has for his daughters and me. He would and will do anything to protect us and keep our family together. I could not have walked through this without him. I wouldn't want to. He is strong when I can't be. He is my rock here on earth. I am so glad God gave him to me. My heart bleeds for Matt because I see how he is hurting. I know he wants to just majically fix things. I have watched Him through everything we have been through and have seen this faith come out of him that just blows me away. I could not imagine not having him in my life.
Thank you all who have been so encouraging to us and praying for us and sticking by us through thick and thin. We have been through a lot these past 11 weeks and I appreciate so much those of you who have supported us and prayed for us and just believed in us. It's so amazing to see this love that has come out of so many. Ellie, Matt, and I are very lucky. What a blessing from God.
Ellie is doing ok today. No new changes. She is back on a full feeding schedule again and they have turned her nitric oxide down again. Hopefully that will be off tomorrow. She has been a little warm now and then, so they did some blood work to see if there was any infection. So far so good, everything has come back normal. We are praying for miracles each and every day just as we know you all are too. We appreciate that so much.
Love,
Ellie's Mommy
