Wednesday, May 11, 2011

The Dr. called yesterday and wanted to run more tests on Mabel. More genetic tests which include more waiting; more wondering. I took her this morning and cried some on the drive. I am thankful for long distance friends who care enough to stop their day and pray for me [and my girl.]

Last night I broke down a bit too. I'm tired of being told by people that they see so much progress with Mabel. "You're with her all the time; maybe you just don't see it..." as if seeing her for a few minutes here or there is going to enlighten me to something I don't already know about my own child. I do see the progress. Trust me--I'm thankful for every little thing she does that is new! I live for each time she looks a different way, or makes a new noise. But in the middle of that progress is still my reality--she is still doing everything she was doing at 2 months old and not a whole lot more. Maybe the issue here is that no one has researched what a 10 month old should be doing at this point (sitting, holding her own bottle, patty cake, crawling, possibly walking, eating food, babbling, pulling up to things...) or maybe everyone just thinks that she is going to 'grow out of this...'

Either way it feels frustrating and insulting. Here's the deal: Mabel is delayed. Our greatest hope is that she would just 'grow out of it...' At this point, however, most of the research says that a delay this complex is almost always a piece of a greater puzzle. I have been told by not one but two Dr's who agree that they are almost certain that there is a 'medical' reason as to why Mabel is so weak, and not developing normally among other things that are happening such as her seizures. Each milestone that she should be hitting is a building block to the next thing that she eventually will do. By not starting to do something, time is passing and we are at a stand still.

I feel like if I approach this by being practical, I am viewed as not having enough faith or hope. I feel like if I approach this too spiritual that I will be told to look at the signs and be more aggressive. I cannot win and it's consuming me.

I know a couple of things for sure: Mabel's dad & I are seeking God. We are praying for our every decision and for every nurse and doctor we see. We are confident that we are on the right path for our child. No matter how close someone is to the situation, no one can ever be Mabel's parent except for he and I. Therefore, whether there are opinions or no opinions--I never need to know. Opinions about Mabel are often more hurtful than insightful. I never want to sound like Debbie Downer by talking about the reality of what is happening with Mabel. The truth is that I don't need to make it any more dramatic; it's pretty heavy the way it is...but I do feel like I should be able to express the reality as it is, without being made to feel like I have 'no hope' or like I'm not seeing or celebrating the progress that she is making. Because I am.

I am here. I am focused. I am being real. I have grown and moved past many things in this journey already and although I may revisit some of those emotions, I want to be clear that being 'real' about Mabel does not mean that I have any less faith in God or hope that Mabel will be fine. God is God. He is sovereign. His will is final and I am ok with that. God made Mabel perfectly. I'm also ok with that.

I am learning that sometimes people believe that their faith and obedience in prayer should produce immediate answers. And I believe that sometimes they come miraculously and often in a mind-blowing manner. Sometimes the answers come much later. Sometimes the answers do not come at all. Because God intended in the beginning for us to live in a world that was perfect and that was shattered and clearly we do not.

I can stand outside and pray over my house all day that God would make it a red house "I have been faithful Lord. I deserve this red house. I will be more happy, more fulfilled, more healthy in a red house. All of my friends and neighbors have red houses. Don't you see that I need this house to be red?" And God may very well say, "No. I gave you a white house." I believe God could make my house red but I also might have to consider the realization that God has a purpose for me in my white house. The question is, in 5 years if I walk outside and my house is suddenly red or it has polka-dots of red, will I be satisfied with God's will in that?

Are we truly ok with God's sovereignty? His ultimate will and plan?

And I can confidently say that I am learning I am. So we will have results from today's tests soon. I never want to make it sound like I don't want your encouragement or that I don't enjoying talking with you about Mabel. I do! I want to spend my days talking about my girl and I am thankful for every single prayer that you are praying on our behalf. In fact, I cannot thank you enough. The Bible tells us that 'when 2 or more are gathered in my name, whatsoever they ask shall be given them...'[Matthew 18:20]. So if you're praying, I'm asking you to agree with me for answers. That is our major prayer right now: That the Lord would provide us answers to what is going on with Mabel so we can better care for her.

As far as the redheads go: They are wild. Jumping on the trampoline, singing songs, eating Popsicles and just being 3 and 4. The greatest part of this process with Mabel is that I also have 2 other children who I have to focus on and love. I cannot be so wrapped up in Mabel that I forget about the importance of these two. It helps to keep me grounded and maintains my perspective. I am so thankful for their loud, sometimes overbearing personalities!

Nora has recently told us that she wants to be a 'bird scientist' or a doctor. Daniel said thats what he always wanted to do too. News to me. But back to Nora--she is beautiful and smart. She really does love animals and babies and oreos. Birthdays are approaching and cookouts are near. Spring was fleeting and sprinklers are coming...
Life is as usual with a few twists thrown in. Either way, I'm thankful and blessed. Sometimes life is just about learning a new dance and I will sure do my best to perfect this one; whatever it may be.


Rieses in Pieces said...


I read the frustration you are feeling in your blogs and I so completely know what you are feeling and what you are trying to get across to your readers.

People don't feel comfortable with illness, disease, syndromes, and conditions. They don't know what to say so they end up saying something stupid. They want to think that they know how you are feeling but there is no way on God's green earth that they can. Not even close. They desperately want to make you feel better because your pain makes them uncomfortable. Some people disappear from your life due to their discomfort with illness and the sadness that naturally comes with it.

You can't be honest and tell your true feelings about your life situation without people thinking you are being pessimistic or lacking faith or hope ... even when those things could not be further from the truth. What people do not understand, Ramee, is that you ARE full of hope, full of faith and very optimistic but the only way you can appear that way to someone who has not been in your shoes is by lying about your life. To voice your fears, concerns and sadness causes others to view you as weak.

I went through this with Maddie's JRA and Type 1 diabetes and then my Stage IV breast cancer (there IS no Stage V, folks!). No one understood that I was living with virtually no sleep because of Maddie's knee and ankle pain (JRA) and then because I had to be up to check her blood sugar at midnight, 3am and 6am (not to mention that I had my mama with Alzheimer's living with us and I would have to listen for her so I could direct her to the bathroom). I can't tell you the number of people who asked me if Maddie would grow out of her diabetes (NO ... it's currently an incurable disease and her body produces NO insulin so she is insulin dependent for life and would die within a week without it). Even my oldest sister, who is a lifelong RN, knows very little about diabetes. And of course no one who was giving me their unsolicited advice or telling me I could get her off of insulin if I only fed her right, bothered to research diabetes. No one understood what a horrific diagnosis this was for a mother.

My cancer diagnosis has been especially frustrating. I AM very hopeful and very full of faith. I am not pessimistic but at the same time I do need to plan for not being here for my girls while they are still young. I have no choice but to plan for the worst (while still hoping for the best). But I felt like I had to apologize for not being 1000% cheerful every single day. It's a sad thing, knowing you will not see your daughters get married and you will not hold your grandchildren. So, shoot me already!

Anyway, that's a long story but I want you to know that I feel your pain ... I know the frustration firsthand. I know who you are and who you aren't. You have the right to be SAD. You have the right to be FEARFUL. You have the right to be ANGRY. Those feelings do not take away from the fabulous, happy, hopeful and faithful person you are. What is happening with Mabel is a horrible thing. The unknown must be driving you to the edge of sanity. It is unfair. You have been to hell and back trying to get a diagnosis. And I wish for you that people would just realize that they don't have to say optimistic things to make you feel better. You need to be able to share you feelings and have your friends, family and readers support you by nodding their head in understanding, hugging you, praying for you and Mabel, reassuring you that no matter what happens God will be with you and Mabel and that His plan is perfect.

Rieses in Pieces said...

Part 2 ...

To your readers ... Mabel is not going to grow out of this. This is a devastating thing for this family. Mabel has a syndrome and the worst part is not knowing which one and what to do about it. Stop worrying about Ramee's faith or optimism! Just pray! And then pray some more!

I love you, Ramee. The answers will come ... I know that just the same as you knew I would be okay after my cancer diagnosis.