The War On Words

Yesterday morning at church Jon and I went down for prayer over Bella's MRI tomorrow. I returned to my seat fighting back tears and lost myself in Sunday morning praise worship. In the music I realized that I was not crying because I was sad, scared, or defeated....but because I was hacked. Mad. Angry. P'd the you know what. My tears were my inner pleading that dang it already Lord I just wanna draw a line in the sand and say NO MORE. No more for her, no more needle sticks, scary tests, anesthesia. No more. No more tears, fears, explanations, fights, battles, no more talking. I honestly had to ask myself as a bible beating, Christ following, warrior mommy how the heck was it JUST NOW dawning on me to draw a line?!?!? To say in the spiritual as well as the natural, "we are done, healed, complete". It crossed my mind that maybe I am so busy advocating, following up, explaining, planning and talking through all the hoops to keep Bella's ship righted that I run out of energy to talk to the One who steers the ship without any help from me. Perhaps I have let the enemy keep me so worn out talking that I have forgotten to be silent before my King?

Last night as I put Bella to bed I prayed heavily over her and I vowed to trust Him more. To do less talking and more resting. Less planning and more praying. Less fighting and more trusting. Less advocating out of defense and more operating in offensive Grace. In those heavy, deep, emotional and all out prayers over her sleeping little form I drew the line. No more. She is whole. She is healed. She is perfect. Every nerve, every neuron, every synapse, every muscle, every inch of her is perfectly made in His design. She is a miracle, she will astound the doctors with her progress. She will be a voice to her generation and her life with be glory to The Lord. Even typing it my heart grips tightly with the thought "but what if she doesn't" . I don't know. I cannot allow my faith the option to allow in any fear today. The what if is not in my hands anyway....the how we get it it and through it is.

This morning I held her as they put in her IV. And by held I mean restrained. It was horrible, her screams break me. She doesn't understand. She was fully sedated on top of me then they carried her to the MRI. I never stopped kissing her face till they carried her out. I cried once she left the room. The line felt faint, fuzzy and unreliable. But in the midst God felt ever present.

I cannot help but think that before the dawn of creation He drew a line in the sand of time too....He said nothing could separate me from His love, that no weapon formed against me could prosper, that He would never leave me or forsake me. His commitment to the line was His ultimate sacrifice. He kept His agreement, there is no "if" with Him. So I will hold tight to His promises for my daughter and let Him hold tight to my line.

Handicapped?

Wow. It has been since March that I have posted. Seems I only manage to post on tough days. I wanna work on that. I have so much to celebrate and so much to be on my knees grateful for.

Tough week. Sunday we left church with a butt naked, hysterically screaming Bella. By Sunday at bedtime I had decided that she would not attend the vacation bible school that was due to start the next day. By morning I was full of confidence that Bella could handle it and hopefully they could handle her and if worse came to worse I was only be a cell phone call away. By 10 am my phone was ringing; three phone calls later and Bella had been moved to the Special Needs room. Deep down I was angry that they reminded me how "special" we are. I had once again gotten used to our kind of normal and had insulated us against anything that said different. My tough as nails, bull headed, suck it up, trust in Grace attitude walled us in and made our world "safe". And here she and I were, both in tears, both frightened and both unable to find the words to express our pain.

I have had a prescription form for handicap parking placards since April. I came up with lots of good reasons why I could not go pick the placards up. The biggest reason is because I do not see Bella as handicapped and I feel that, well, I dunno exactly how I feel but I did not want it. Finally yesterday I went and got them. Afterwards I pulled into the church to pick Bella up and they waved me through to a handicap spot. I felt like an imposter as I hopped out of my car on two very healthy legs. I picked her up from her room and when we got back to the car she freaked out, full on tantrum, hitting me, kicking me and biting me so much that I could not hold on to her……and as I was there trying to wrangle her, signing with her to try to get her to listen and praying silently in my heart for patience I understood why we had a handicap placard and was SO, SO grateful for the huge safety zone of that jumbo parking spot that kept my precious girl out of a very hectic/busy parking lot. I had to admit to myself we needed it.

I think so much of how we experience our lives in perception. And if you have read any of my blog posts you know that perception is certainly an area I could use some improvement in. I have been trying to figure out why that bright blue thing hanging from my rear view mirror hurts me so much. At first I thought it was because I did not want that "label" on my precious Bella. Then I thought it was because I was worried what people would think when they saw us hop in and out of the car all able bodied and such (though I guess when they see her having a fit and me in full on sign language they judge not?? I dunno). But I think I hate it because it tells the world something is broken and I do not know how to fix it. I feel like it says I have given up hope.

God is so mercifully teaching me to truly lay everything down to Him. And it is hard. I have spent my whole life thinking I had to hold my world together. But God is showing me that handicap placard has a supernatural significance; I am handicapped. I have a limp like Jacob after wrestling with the Lord. I have no strength without Him. I cannot raise my daughter without Him. I am not physically, mentally or emotionally capable of rearing her, without Him. I am tired, but He can lift me up on wings as eagles so I can run and not faint. I have no answers some days, His word provides the answer to every question. I feel so weak and so weary, the joy of the Lord is my strength. And on those days where I am tempted to lose hope, my hope is in Christ….joy does come with the morning….her giggles and sloppy kisses erase the kicks and the bites. Putting a puzzle together with her delights me in her sense of humor. Watching her rock her baby doll shows me that she knows she is adored. And that handicap placard says that I am laying down my need to be whatever it is I think I have to be, to being what she needs me to be. And I have to remind myself on some days that is the reason He chose me to be her mommy.

So, next time I start to be ashamed of that ugly blue badge or embarrassed or resentful…..I will choose gratitude. I will choose joy. I will choose peace. That blue badge does not define me. Nor does it define my daughter. We are royalty. We are daughters of the most high King. We are beautiful. We are whole. We are blessed. And we get really great parking.

His Bella

I am grateful for the return of school. The comfort of our tight schedule makes the chaos a little quieter. My online silence has been due to new developments and lots of doctors appointments. That and the harsh reality that I have to sometimes get myself to a better place mentally before I throw up all over my blog.
Newest developments….Bella has officially been diagnosed as having Soto's Syndrome by her geneticist. I thought I would feel immense relief at having a diagnosis…something I could point my finger at in the really tough moments and blame. But I cried. Hot, angry, sad, disappointed tears. Then, as I do, I sniffed, I wiped and I planned. I plan for therapies. I plan for futures. I plan for survival of this madness. I plan to make it feel like I am not spiraling out of control into what some days feel like a rather dark hole. But God is gracious to me and when I cry out He pulls me close to Him and whispers into my mother's heart how much He loves my Bella. That she is His Bella. That He formed her and He alone can plan her future. And then He tells me the same about me. Ahhh, peace.
I have once again been asked to lay her on His altar. We saw an ENT in February and after testing discovered that Bella's eardrums do not vibrate properly. The doctor's first thought was that it was due to trapped fluid so she put Bella on medicine to dry the fluid up for 30 days. We saw the ENT again Wednesday. Bella's left ear shows marginal but still dismal improvement and her right ear shows no change at all. The doctor thinks now that the fluid has been there a very long time….the concern being that if there a long time that the fluid could have destroyed the small bones in the ears that create sound. I asked the doctor if Bella hears like we do….she said Bella does have some hearing in her left ear, possibly some in her right ear….but it is all muffled and garbled much like Charlie Brown's teacher. No wonder when I tell her I love her she says "shoves chu" back. Oh sweet baby girl. Bella will have surgery Friday morning to insert tubes in her ears. The hope is that the tubes will remove any remaining fluid and correct the problem. We will retest her hearing in 30 days after the surgery. If there are no changes then we will walk that road. I can't think anymore on that.
A dear friend reminded me of two things; both much needed changes in my perspective: 1) Though Bella is on the autism spectrum she is loving and snuggly and seeks me out whereas many children on the autism spectrum are much higher functioning in their daily lives than Bella but they don't love on their mommies like Bella loves on me. Oh thank you Jesus that you know me so well to know that I could not survive without her snuggles! 2) That even if we end up with hearing impairments that is most often fixable with hearing aids and the like…thankfully we are not facing something unfixable like blindness. Harsh, but true.
So while this may not be my most personality packed blog post it gets you up to date. Right now that is all I've got to give, everything else goes to Bella.
"He tends His flock like a shepherd: He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young." Isaiah 40:11 NIV

a.k.a. Warrior Mommy

Today I woke up able to see silver linings. The heavy weight has lessened and in it 's place is gratitude. Last night before bed I was reading a book about praying for your children….and it started talking about learning to release your children to God especially during difficult times when your mommy heart just wants to hold them tighter and protect them. The book kept encouraging me to pray Bella over to God and trust Him to protect her on our difficult journey. No matter the outcome. I did not want to. At all. Not ever. But I felt that soft nudging from Him to trust that He loves her even more than I do and that He does indeed have good plans for her. I told Him in no uncertain terms that I was not going to pray this because it would make me cry and I just could not bear to cry anymore. The soft nudge continued and soon I was praying, pleading, hoping and indeed releasing her over to Him. Trusting as faithfully as I could that it was all under control—not under my control freak OCD micro managed to hold the world together with duck tape control—but under His perfect, peaceful, always on time, always for the best control. The tears dried up and I felt the peace He had been so eagerly waiting to lavish upon our home come and with it came sleep.

So today I woke up to the bigger picture. She is perfectly where she is meant to be. Life will march on and we will be ok. Good things await us. His best awaits us. He will be glorified in her story. And today, be warned, Warrior Mommy is back. There are oodles of things that I am not good at but there is one thing that I KNOW I am good at. And that my friends is battling it out for Bella. Being her voice and her advocate. In the light of where we are and looking back at from where we have come from I know that I know that a strong component of why she is ours and why she is alive at all is because I advocate for her passionately and without apology. When it comes to Bella I rarely if ever doubt myself and I never EVER back down. Maybe that is why He choose me to be her mommy after all. Yesterday this seemed like a cross to bear…today I wear being the oh so blessed mommy of a special needs daughter truly as a badge of honor. While being a mother takes a very special heart and the will to lay yourself and your needs aside minute by minute being a special needs moms takes a fighter. A warrior. A survivior. a.k.a. Warrior Mommy.

Men have a battle stance. They hold firm and guard the door by force. Women….well, we fight in high heels. We can run, dance, tip toe and balance on something smaller than a dime and we will crawl over broken glass for a child we love; all the while looking beautiful and writing stellar thank you notes. We fight with beauty, not always with dignity and not always the way the world thinks that we should but we press forward when men lag back from exhaustion. We march on when everyone else walks away. We take the bullet and sew up the wound all in one step and we never, ever, ever give up.

My prayers today are songs of praise and gratitude that He saw in me the fight she needs. I am humbled and honored He felt me up for the task of being a special needs mommy. I am sincerely grateful for every single painful moment I have ever walked through because every single moment of my life was to make me strong enough, bull headed enough, confident enough, and prayerful enough to be a Warrior Mommy.
So I am sliding on my high heels, fluffing up my tutu and tying on my super hero cape……it's all up up and away from here!

“Paco, we’re not in Kansas anymore….”

I went to the doctor Tuesday. I have a raging ear infection in my left ear. Seems I recall having read somewhere that ear infections are your body's way of saying that you are not happy about something you are hearing. Appropriately enough the doctor said my ear looked very "angry". Ya think? I attended a parent education meeting at Bella's school today and as I sat in the front office I kept fighting back tears. I just don't want to be here. I don't want my precious daughter to be here. I don't want this journey. And I don't want to be strong anymore. Am I truly this vain? This selfish? This self absorbed? Good God I have to remind myself how thankful I am that she is so physically healthy.
I went back to the meeting full of moms. All moms of special needs kids. Surely I don't belong here??? But I do. A whole new definition to "I once was blind but now I see" exists for me. Suddenly I see it all. The delays, how far behind she is, how inappropriate her behavior can be. It's all there. It has been all along I just chose to push through and tried to believe it away. But we are here sliding down this strange and scary rabbit hole neither of us knows how to navigate.
I learned a lot in the meeting about resources that are there for our special needs children. It was uncanny to be in room full of moms whose every days looked like mine….you cannot go to the bathroom with the door closed because you have to listen the whole time, you cannot walk away from your child because they will choke themselves eating, going to the grocery store is exhausting, you never get to sit and do just one thing because part of you is always trying to prevent the land mines from exploding in your child's world and of course, never sleeping. How can that be all of our normals? How can I have convinced myself for the past two years that it was normal? But I did. And I think that is part of what has made it so much harder to accept. Our days have not been normal. I have just been really good at duck taping us together and insulating her. Maybe it was not fair to any of us to have it all come crashing down at one time but that is neither here nor there because we are here now. And now much like a bandage I've got to rip off all this leaky duck tape and rebuild our world. Now life is about pushing her more than insulating her, more about reaching out then putting on the smile, more about honest prayers than happy ones. If the Lord has been determined to break me of my need to be in control He has now succeeded. I have never felt more ill prepared or less like I have it all together than I do right now. And never have I felt like my knowing what to do has mattered more than it does now. This is her life. This is our life. I have to learn how to take care of her and take care of myself, my marriage--my whole world is caddywompus and I need to learn how to right the ship, keep sailing and navigate unchartered waters while cooking dinner, potty training, folding laundry, putting on makeup, etc all at the same time and I feel like I am already two years behind.
Today was a rough day…her world apparently felt caddywompus as well….lots of screaming, lots of frustration, lots of falling down for no reason. All I could do was hold her when she would let me. And pray.
The mom sitting next to me in the meeting today leaned over at one point and said to me, "Oh hun, you are in a whole new world now." Yup, Paco, we are not in Kansas anymore.

Special Needs

It has been 8 months since I posted or have written anything. Today I selfishly write for me alone. To clear my head and to silence all the nagging voices in it. I don't even know if I will publish this post. I just need to write. I need it all out there. I need to see it come together in tiny characters across a page that somehow paint a picture I can understand. That I can grasp. That I can somehow function within.

I don't know how to do this. To state the facts sounds like I am complaining about my precious daughter; like somehow I am disappointed. And it makes her sound like a little monster. But how can that be? She is the most precious, most adorable, most heaven sent little being I have ever seen. I cherish her. I ache for her. I don't know how to give her everything I have and more and to fight for her and advocate for her and survive day in and day out with her. And never sleep. And have anything left over to pour into my husband, my marriage. How to give anything to any other relationship??? It takes all I have to pound out a text message to a friend. How do I email? How do I lead my team at church? How do I mentor? How do I run a business? How do I breathe one day to the next? When do I shower? Will I ever care about what I look like again? I am exhausted. Not just tired from lack of sleep, exhausted from lack of rest. My mind never shuts off. The patience I summon to cope through one tough Bella day is more than I thought was in me. My spirit is tired. Too many midnight prayers begging the Lord to comfort her through a nightmare. Too many tears shed in the car when I am alone. Too many things left unsaid because I don't know who to say them to and am scared they will be real if I say them out loud.

The flip side is that I would die for her. She is what makes the sun come up. She is why I was created. Lord, how do I do this? How can I ever be enough? Am I ruining her? Did I break her? Have I been a bad steward of what you so graciously blessed me with? I am raw with emotions. My edges are in tatters. I am broken. Enter the next flip side…I can't be in tatters. I cannot be on edge. I can't lose it. I can't take a day off. She needs me. She needs me in a way neither of us can process, understand, cope with or explain to anyone else. In the really tough moments when she is hitting me and biting herself, when every attempt to communicate ends in screams and tears in those moments when I want to crumble she needs my strength. When I need to rest she needs me to be strong. When I don't believe in myself I have to believe in her. I am her voice. I am her touch stone. I am who pulls her though the dark. I am her mommy. And I don't know how to do this.

Most of you who know me and Bella must think someone else has hacked into my blog account. How could sweet little spoiled rotten Bella be the above? A few of you think I am just a lousy, selfish friend who no longer works at our relationship. Some of you have watched me and thought if I would just be more firm, if I would push harder, if if if….no one has told me more "if only I would, had, could, should" than myself. The first year when she was late to hit her developmental milestones we attributed it to spending at least a week every month of her first year in the hospital. She would catch up. When she was almost 2 and still not talking or walking we said when she was ready she would do it. By 2 she had weekly speech therapy and occupational therapy. I thought it was a waste of time. She would get there when she got there. At 3 they said she had to go to a special school and I balked. I bitterly went to the orientation and left sobbing because they called her "special needs". They had no idea she was my precious prayed for and prayed over and prayed up Bella Bean. Special? Yes. Special needs? Certainly not.

But somehow that term, that label that I abhor and was terrified of began to free me. Suddenly the tantrums and the aggression and the lack of sleep and the nightmares and the sensory issues, and on and on…had a reason - even if I did not like the reason. I hoped I would explain it all to myself by writing all this out. But I can't. This is experimental on the job training. It is like being thrown out of a plane with no parachute and hoping you can figure out how to fly all while trying to make sure your child does not hit the ground first.

So here we are. It is Monday and we have special needs. I am not longer going to feel guilty for doing what we have to do. I know my daughter. I know when it is a day that we can't leave home. I know when I can't be on the phone or the computer, when she needs me unconditionally for nothing more than holding her hand while she watches a princess movie. She has special needs so I have special needs. We met with the geneticist/developmental specialist Friday. Right now our diagnosis is Pervasive Developmental Disorder Not Otherwise Specified. The doctor is leaning towards a diagnosis of Sotos Syndrome and/or high functioning Aspergers or Autism. We will know more in a few months. We will be adding additional therapists to our days and Bella will continue at her school 3 hours each morning.

God is constant in His mercy. And He adores Bella. He is holding her. And He is holding me. He alone knows what our special needs truly are and He is faithful to meet each one.

A Mommy’s Heart

Today my heart is full of mommy joy….these are words I wrote sometime back to try to explain the wonder of her arrival in our lives, to somehow quantify how beautifully God had fulfilled every desire of my heart….playing with her today only further reminds me how He longs to do the same for each of us.

You are right, there are things that I traded in adoption. But nothing that I was cheated on.

No, I never felt the excitement of telling Jon I was pregnant. Instead I felt the delight of telling him about the baby that we could love.

No, I did not know the exact due date to have my child's nursery ready by. But I did get to decorate and prepare her room with all the joy and enthusiasm of any expectant mother.

No, I did not have a baby shower before my baby was born. I had it when she was two months old and it was all the sweeter.

No, I never felt her stir in my womb. Instead I felt the flutter of my heart when I first laid eyes on her in that hospital crib.

No, I did not go to the hospital with a specially packed bag to check in to Labor & delivery. I went to the hospital with a special bag packed to bring home my baby.

No, I did not stare at her through a nursery window; instead I stared at her in a rocking chair the first time I held her.

No, I did not feel the anxiety and pain of labor. I felt the anxiety and pain of biological visits and a six-hour mediation as I pushed to make her mine.

No, we did not have visitors in the hospital to smile and dote over her the day she was born, but we had a courtroom full of friends to smile and dote over her the day we adopted her.

No, I did not get to send out birth announcements; I got to send out adoption announcements.

No, I never conceived my daughter in my womb, I conceived her in my heart.

Fun Fact

FYI, if you feed a 2 year old blueberries please know that they will fully reconstitute in bathwater. Enough said.

Wanna See The Face Of God?

I begged heaven for my daughter. I shook my fist in anger at God that she was not here for me to hold. I mourned never feeling a growing child move inside my belly and in my very soul I ached to mother. There was a hole in me nothing else could fill, but her.

Waiting for her was the biggest stretch my faith has ever known. But the journey was the most intimate I had ever been with God. Through those years He tested my love, He cast down every idol and He drew me to Him. I know He longed that I would desire Him more than I desired her. And how eager He and all of heaven must have been watching the calendar that I could not see that showed the date she would come into our family. As I can only picture in human terms I chuckle to think that perhaps He could barely sleep the night before I met her knowing the joy I would soon hold in my arms.

Now I have learned that the joy was far more than becoming a mother. The joy was in seeing His promise manifest before my very eyes. Every time I look at her little cherub face I know my prayers are heard on high. I know He places the desires in my heart and I know that He has good plans for me. I know He holds my hand and I know that He delights in me. I know He is my shield and my place of refuge. I know that when I look at her I see the face of God...she is a real, live, breathing prayer come to life…His hand extended to mine…His face smiling down upon me. I am humbled by the lavishness of His gift.

Now dear reader I know that you may not much care that it took me what felt like a lifetime to become a mother. But I bet you care that God answers prayers. And I bet you care whether or not faith works. I bet you are itching to see God's face revealed in your own miracle emerging from the ether of heaven into your life. So I have this to say to you: Your prayers are heard on high. He places the desires in your heart and He has good plans for you. He is who holds your hand and He absolutely delights in you. He is your shield and your place of refuge. His hand is extended to you…His face is smiling down upon you and He is eager to lavish His love upon you. Wanna see it happen? Then trust Him with your whole heart and nothing less. He has a calendar with the date of whatever you are believing for circled and I bet He won't be able to sleep the night before you see His face manifest before you.