Once again, actually the 5th time, my hero was rolled down a hallway and taken behind "those doors" for yet another procedure. She just watched me and I could see in her eyes the wonder of who the people in blue were and why was she going with them. It took everything in me to not let out an ugly cry right there in the hallway. But I held it together all the while praying and begging God to please protect her and to hold her in His precious hands.
She was having a second set of tubes put in her ears. A few weeks ago, she had to see a Dr at the Cleft Palate Clinic and they checked her ears. She was not getting a good test for hearing so we made a follow up appointment with our ENT. Apparently, one of her tubes that she had put in this time last year was starting to come out and it was causing so much irritation and infection (that we didn't know about), that the infection was hardening and basically forming a rock in her ear. She couldn't hear out of that ear, bless her. So the ENT decided to put in new tubes and while she was asleep, he would also evaluate her palate for a possible sub mucous cleft.
This sweet girl has been through so much that when she has to have her blood pressure taken or anything else in regards to a dr, she sits there like a champ and lets them do whatever they need to do. She doesn't fuss or cry. She may act shy and give you the evil eye but she acts like a big girl.
Everything went well yesterday but they did find a sub mucous cleft palate which means she could possibly have surgery between 4 and 5 years old. Her muscles are too weak or don't work at all in her throat and mouth to close that palate, especially if it's short. She also has a dead muscle on the left side of her lip which makes one side of her face around her lips not really work. She will have to work with a speech pathologists to try and strengthen those muscles.
Receptively, Marlee has a small delay, like only a few months worth. She obeys and understands what we ask of her. Expressively, she has a significant delay. She only says Momma and most days it is not with the "M" sound. She tucks her bottom lip under her front teeth to form "momma". I'll take it though because I've waited so long to hear her say something. She will say "Uh-oh" sometimes and it is so cute! I know David longs to hear her say "Daddy", but he's just too tough to admit it.
If my sweet girl were to stand in front of you without a shirt on and you were looking at her back, you would definitely be able to tell that one side of her body looks different than the other. But, that's ok. She has been fearfully and wonderfully made by the Creator of the universe and so anything "new" that we find out is not new to Him. He already knows and just waits for us to trust Him with the findings. I've come to the point where if I hear "new" news, there is this peace in my heart. It doesn't mean that I still don't cry and question but this peace is still......I know it only comes from the Lord.
I still struggle daily because I am human. I want her to have the best life possible with as much love and kindness. I want her to be able to do everything that other 2 1/2 year olds are doing. In my head, I know it will come......but in His timing. He has blessed us with her little life and I hope she always knows how much we love her and are there for her cheering her on.
I know and understand completely that Marlee could have it so much worse. I have seen so many heart breaking things at the hospital or the outpatient buildings and it makes me realize every time I'm in one of those places just how extremely blessed I am. Yes, Marlee has struggles and will possibly have struggles her whole life.......there is no way to know that right now. But what I do know is that God is sovereign. He is loving. If what Marlee goes through brings Him glory then it is all worth it in the end.
Yes, she is my hero and she has no idea. So if you see me in public and you ask me about Marlee, please don't feel bad if I start to cry. They aren't tears of sadness but tears of love and courage and goodness because I know how much of a blessing she is to me and I know how much I don't deserve her. She truly is a gift from God.
~A
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