Healing isn't coming....but we won't give up

So, let me tell you about how God has been lining up some things for me lately. God and I have argued a lot in the past months. I've been struggling with thoughts of the future with Tyley Sue and I've been praying for answers. If I'm being honest, I would also tell you that there have been times I literally haven't even had words to say to God. Times that I've just sat in silence, desperation, anger and bitterness. During those times, I can't say that I left my "quiet time" with God feeling better or more at peace-just being real with you all. I have instead left those times more angry and desperate. Desperate for what though? I've been desperate for answers and for healing. Desperate for progress. Let me expand on progress too... I don't want just an utterance of a new word that happens one time, not just a good day that maybe looks or feels promising, not just a day where we don't have complete and utter meltdowns or the infamous "poop incidents" that happen at our house; but REAL progress. I want an overnight miracle where we literally wake up one morning and she says "good morning", "I'm hungry", "Momma", and "I love you".

But can I let you in on something that God has revealed? I hope you are ready for it, because I'm still not ready. Y'all.....healing isn't coming to Tyley Sue. Not in the way we like to think, pray, or desire. It's hard for me to say these words out loud. During my times with God in the past week, I feel like I have hit a few breakthrough moments.....like the time had come for Him to really reveal some things to me...or maybe it was the first time that I was ready to listen.

First things first, as desperate as I am for Tyley Sue's healing, I need to be that desperate for Jesus...all the time. Not just when I'm seeking answers or making requests. That's just the way it's got to be. Also, just because the answer is no it doesn't change the fact that I'm going to keep on seeking, asking, knocking, begging, serving, praising, and loving Him.

This past Sunday our middle school group was on their way back from camp, so I joined in on a small group with some other friends. Let me just tell you that it was meant to be for me to be in that room last Sunday. I took some notes that day that I've looked over this week and continued to let God speak to me through them. The message was all about not giving up on your dreams....

1. Even if the journey doesn't start well.  Or, in our case, never seems better.

2. Even if the journey is full of surprises....come on now, anyone who knows our testimony knows that it's been full of surprises! God has constantly been at work. Weaving together a beautiful life and testimony to point back to Himself through us. I don't always do it justice, I don't always do it right, and I fail daily....but He has called me faithful even through my mistakes and has entrusted me to be the mother to this unique, perfectly imperfect, one in a million little girl.

3. Even if it takes a long time to realize it. Habakkuk 2:3 "If it seems slow in coming, wait. It's on it's way. It will be right on time."  So basically, it's going to be slow, but it won't be overdue-not even by a single day. He says to be patient. When I read this, I don't think that healing is coming slow. I think He's telling me that in His time, He's working good and He has a plan for this madness. And that "it" will happen on time. "It" may not be healing or progress. It may just be the moment or moments where He becomes greater and we become less. (I'll get to that in number 5 and tell you what "it" may really be.)

4. Recognize and value the process. "Process"....will we ever really be done with the "process"? I don't know. I think the process is life. Life is our process. We have to value the day to day mundane things and look to find joy even in the trials. 1 Peter 1:6-7 talks about rejoicing even though you've had to endure trials. Sooooo basically he was saying, joy is ahead even though it sucks right now. ( I think God is good with my paraphrase here and I personally don't think he minds the word "sucks").

5. Refuse to let offense stop you. Genesis 50:20....you intended to harm me but God intended it for good. I've told several people before, and I believe I've said it on previous blog posts, I always go back to this point with God.....if this is the road you have for me you better use it for good. Let me glorify your name, praise you when it's bad, and praise you when it's good. Use her, use me, use my family to bring glory to your name...just please don't let it go to waste.

If never bringing healing to her in this lifetime allows our testimony to be strengthened and shown to the people we encounter in order to make Your name bigger.....we accept. If more people will come to know God and his character while watching our life unfold and seeing our continued faith versus seeing a miracle worked, then let it be. 

Just last night at a worship concert I felt God confirm to me that healing won't come in the sense I would like. This wasn't a devastating moment like it sounds. In fact, it's something I think I've felt and quietly known for some time.  I believe that more progress will come. We will still fight for whatever little bit of progress we can gain as we pursue therapy and work with her daily.  But during this process (life) I'm called to praise Him still and find joy in it. Joy shines through even the darkest times because it's not based on our circumstances, but it's based on the One who holds our circumstances in His hands. I'm not a sad person, I won't allow a deleted chromosome to make my family unhappy. We love big around here. We have tickle fights, we act silly, we chase each other around the circle of our living room and kitchen. We play music really loud and dance like most white people dance-with no rhythm! We have family dinners.  We have amazing friends who understand and accept the good, bad and ugly that comes with my family. We have unbelievable support and love from our families. Life is good.  Now, life hurts at times too. Sometimes Tyler and I lay in bed at night and feel the weight, the burden, the heartache, the death of our dreams come down on us. But before we close our eyes we remind each other that life is good....even without healing, it's good and He is good. We have been blessed.

P.S. I would like to put in this little disclaimer, that although I feel confident in God's word to me this past week and last night that healing isn't what it's all about for us, I pray to be wrong. The flesh in me still has a fight and a desire to see a miracle, so, God, if you change your mind....I'm good with that too :) 

His plan > My plan

As females we all care about our appearance. Even if it's just a little, we care. Not everyone wears tons of  makeup or goes crazy over the latest fashions; but we want to feel pretty. As a girl, I shave my legs, tweeze my brows, apply self tanner, lotion up multiple times a day, paint my nails, put my makeup on each morning, spay some perfume, & fix my hair. Some may say it's vain, but I do it because it makes me feel good and I think my husband likes it!

As we found out about what exactly is going on with Tyley I had some pretty crazy concerns. I have been thinking, what if she can't take care of herself from a hygiene and grooming standpoint? What about her eyebrows? Will I tweeze them? Will I wax them? I mean, I don't want her to have a unibrow!!! What about her legs? I don't want them to be hairy like a man's legs. So, will I shave, wax, use Nair? Will I put makeup on her face for special occasions? Will I buy perfume for her? Something that is just the right scent...where when people smell it they always think of her?

I know it seems so insignificant to most. It's something we take for granted with our children-like so many other things. We just assume that our life is going to be a certain way. That we will have kids, teach them certain things, they will retain said things, and then perform. But, that's not the case here. I have thought about needing a walk in shower-because she fights me now getting out of the tub. At 30 pounds, it's not so bad; but at 100 pounds it will be. I've thought about the possible regression of her ability to walk-which is a concern-and the need for a handicap accessible home and vehicle. I've wondered if I will be watching Bubble Guppies and Little Einsteins for the rest of my life. I've wondered if I will always feed her, bathe her, dress her, rock her, sing to her, lay with her so she can go to sleep, change her diapers, and blow bubbles for her. Again, may sound crazy to most, but those are the thoughts that creep in as reality sets in. Those are the thoughts that you can be certain I am tossing around when you see me gazing at her pretty face for long periods of time.

Most of us as parents dream about the future of our children. Playing ball, cheer leading, playing in the band, swimming on the swim team, playing on the chess team, performing on the drama team; getting a driver's license, graduating high school, going to college, first boyfriends/girlfriends, and even comforting them with their first broken heart. When you hold your little girl you dream about seeing her walk down the aisle to her soul mate. Those dreams are ripped away for a lot of us though. That is one of the parts that is so painful and comes up over and over. As your friend's children progress and move on to new stages and you stay in the same phase you've been in for months or longer; those are the thoughts come up again and it hurts all over.

One thing that I will always have though that not every parent gets is a little girl who loves me. I'm always going to have cool points. She isn't going to be embarrassed of me! She's always going to hug and kiss me-even in public. She's always going to want to sit in my lap and have me sing to her and rock her. So when you read that children's book, "Love you forever", you know the one, "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be"; I will be the mom rocking her teenage & adult daughter back and forth, back and forth.

I'm writing this all down in hopes that I'll be proved wrong, that one day I will look back at this post and think to myself "see, you were worrying for nothing!" I'm writing all of these assumptions down knowing that God is in control and His plan is greater than my own. I know that healing is up to Him, but I also know that His plan may not be to heal. So, for now, I pray for His sovereign hand in our lives and on my daughter; and I prepare and think about what our future holds. It's only natural. I could pretend that I don't think these thoughts, and that I'm trusting so much in His plan for our life that I don't even wonder what my life will look like in 5, 10, 20 years-but I'd be lying. I trust Him and I know He's in control and I'm honestly okay (most days) with whatever His plan is. His word tells us, in Jeremiah 29:11


"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.

I cling to this. I know that He is good and that is plan is for our good. I know that He's in control and that no matter what, His plan is the best. The trials that have come my way are for my good. The heartache I feel is for my good. It may not seem like it right here, right now, but looking at it from a perspective with eternity in mind, the perspective God has, it is good. It's amazing how quickly I forget what a small glimpse of life I have. Our view is so limited, so tiny, in comparison to the view God has. I also remind myself when I start wondering about the future and what steps lie ahead that God is only going to give me a little bit at a time. First of all, I couldn't handle any more than that as a human-I mean, I can even mess up the itty bitty baby pieces at times! Secondly, if He laid it all out, gave us every piece of the puzzle at once, we wouldn't need to return to Him daily. The only way to make it through and draw strength each day is to return to Him with a willing heart and spirit and allowing Him to fill us again. So, next time I'm yapping and complaining about whatever trial I'm in, ya'll remind me of this! You can also remind me of this verse from James chapter 1, verses 2-4

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything."

Or this one from Romans chapter 5, verses 3-4

"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;perseverance, character; and character, hope."

And, you can even show me this one from 1 Peter chapter 1, verses 2-4

" In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed."

Bottom line is, I do trust Him and even though some days are darker than other, I'm excited to see what He's up to in all of this. I'm praying for something big, healing or not, I'm just praying He uses us as we endure our trials and blessings in Tyley Sue, and that He allows me to share in a way that can help others.