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How much should I share with you about what's going on with me? I say 'me' because Anna is doing fine right now. Yes, she's been diagnosed with a very rare genetic syndrome that's not going away. She'll most likely get skin cancer, tumors in her jaw in puberty (great time for that, right), and a myriad of other things, but at this moment, things are good. No tumors, no cancer yet. Thank you, Lord.
But, as her mom, I'm having a hard time. Maybe my hard time can help someone else who's having a hard time, too. So, let's just crack open my heart for few minutes, would that be alright?
Well, we had our Mommy and Me ballet class this morning, and it did not go well. She sucked her thumb and did nothing most of the time. She gets very upset when the teacher lays on her tummy on the floor to do exercises (Anna thinks she's hurt, it's the sweetest thing ever), and she doesn't know how to jump yet (yes, I know this is not really a big deal, I get that). I know I got some concerned looks from the other mamas, and one little girl coiled back when Anna touched her arm. Sigh... I couldn't look any of the other people in the face during class, and I left in tears. What is my problem?! My emotions are a rollercoaster, and I feel like I should have this together by now. But I'm not even close to 'together.' And I feel guilty when other people think Anna's fine and I don't; am I looking too closely and over-analyzing?
After waffling back and forth, I am coming to terms that she is, in fact, special needs. She just is. I need to accept that and start from Square One. Does that mean I'm going to have lower expectations for her or not challenge her? No. It means my expectations for Anna will be tailored to her, not to the average almost-three-year-old. Any 'What Your Child Should Know in ____' books are out the window. I think I was getting embarrassed in ballet that she wasn't doing what the other girls were doing, and she's one of the oldest ones in class. If I accept the fact that she's unique (I know, God made us all unique, but you know what I'm sayin'), I won't compare her to the other girls. Instead, I'll focus on what SHE can do, not what someone else thinks she should be doing. Sounds good, huh. Yeah, that's my brain talking. My heart will tell you something else. My heart will tell you that it breaks for the moment when she's older and realizes that she's not like everyone else. My heart hurts for the challenges we will face together as part of Gorlin Syndrome.
But what does God say?
About the heart, God says it's deceitful (Jer. 17:9). Okay, so I can't trust what my heart is saying. Yes, it's going to be a rough road, but let's not have a pity party. Lots of people have it worse off, and at least I have a God who will never leave me or forsake me. The Bible also says that I shouldn't let my heart be troubled (John 14:27). Okay, that's good...
About the mind, God says I have the mind of Christ (1 Cor. 2:16). Yes, good... And that God will keep me in perfect peace if my mind is stayed on Him (Isaiah 26:3). Oh, peace, yes, that's what I want. And Phillippians 4:7 says that the peace of God, which passeth all understanding, will keep my heart AND mind in Christ Jesus. Wow! That's some good stuff! Hey, are we having Bible study over here? ;)
And I'm clinging to Romans 8:28 as well, which says
And we know that all things work together for good to them that love God...
For good. All things.
We go for Anna's MRI on December 11th in Birmingham. They'll look for brain tumors and some other stuff. I don't know what God has planned, but I know that He does, in fact, have a plan. And I know He loves me and Anna, and He loves you, too.
For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end. ~ Jeremiah 29:11 (yes, I'm a KJV girl)
Well, I may have shared too much. You may think I'm a horrible mommy, that I'm in desperate need of therapy (wait, isn't that what a blog is for?), or whatever else. I promise I'll get back to blogging about CC sometime, but thanks for sticking with me through this impromptu therapy session. ;)
My brethren, count it all joy when you fell into divers temptations; knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.
James 1:2-4
Thanks again for your prayers, and God bless you, friends.
Wait!
Y'know, I was just reading this again, and I don't think I tell you enough of the good things about Anna, just her problems. So, very quickly, Anna is the most loving person you'll ever meet, she absolutely adores her big sister and animals, and she bobs her head and dances to any music she hears. She is a blessing to me and our family, and I can't imagine my life without her. Just so you know... :)
Melody - It is obvious how much you adore your precious girl, and all your feelings are completely normal. My oldest daughter was diagnosed with Aspergers at age 4, but I knew she was special before she was 2. She also has a serious brain condition which can cause life-altering issues once she hits puberty (migranes, numbness, paralysis, etc), but so far she has had relatively minor issues. We go in for MRI's every few years to see her progress.
ReplyDeleteWe, too, got the sideways glances at ballet class when my daughter wouldn't prance across the floor, but would instead run to the mirror to stare at herself (we later realized that her reflection was a comfort to her - it still is). And my heart has been broken time and time again when kids ask why she is so "weird," or they whisper behind her back. But those people don't know my sweet girl. Those that take the time to get to know her (and she has LOTS of friends!) accept her quirks and see the amazing gifts she has. She is brave and funny and has a beautiful singing voice. She is the first to encourage someone who is struggling and is very kind to little children (she is almost 9 now). I say this because I didn't see any of these qualities at age 2 or 3 or 4.
I have been on my knees more times than I can count asking God for his wisdom, strength and peace. When my head would go to imagining her life as an adult and the chances of her having a husband and children (which now I am confident will totally happen - not so when she was little), I go back to "'For I know the plans I have for you,'declares the Lord. 'Plans to prosper you and not to harm you, plans to give you hope and a future.'" (Jeremiah 29:11). God has an amazing plan for both of our girls (and our other children). He created their inmost being and knit them together in our womb (Psalm 139), just as they are. And I can honestly say, 5 years later, that the growth and love that I have in my life is directly related to this trial. I did get angry and resentful and wonder why my daughter had to go through this. And even now I sometimes have to struggle with self pity or frustration. But I have to come back to "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." (James 1:17). And our girls are one of His perfect gifts. Will pray for Anna's upcoming tests. Blessings to your family.
Oh, Christine, thank you so much your comment! I was hoping some other moms with special needs children would reach out and let me know that what I'm feeling is normal or okay. I'm sure I will come back to this comment often for encouragement. I, too, wonder if Anna will ever be able to get married or how independent she'll be when she gets older. That's when I have to go back the verses you mentioned and just take things one day at a time. Yes, God has a plan for our girls, Christine, and He made them exactly how they are. I need to celebrate God's creation and be thankful. And yes, I'm sure it's going to be hard some days (children can be cruel sometimes, can't they, but I think a lot of that is from ignorance), but God will get us through this. I'm very thankful to God for moms like you, Christine, who are so open to share your feelings and so willing to encourage me. Thank you again, sweet friend.
DeleteI think you are exactly normal. I don't know your situation personally, but I see Anna's diagnosis as a major left turn, even if you sort of saw it coming. It takes time to reorient and adjust just to the information, let alone the reality of your new direction. And then it takes more time, I'm sure. :) I lift my eyes up. . .again. . . and again. . .and yes again. ;)
ReplyDeleteDanielle, that is the PERFECT way to describe this situation. Thank you for putting it into the right words! Yes, I'm sure I'll be lifting my eyes up, too, very, very often. Thank you for the encouragement, Danielle. I'm so glad you found the blog!
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