A friend asked me Friday if Bella will every speak "normally". Many experts say "no" but I believe she will. So I have taken to speaking over Bella that she will be a voice to her generation. She has a genetic condition (Sotos Syndrome) that causes her to never stop growing, hence she is much larger than the children in her age group and runs a little on the "thick" side. Often people will say to her, "you are getting so big" and I always say "yes, she is getting tall!". Or someone will tell her she looks pretty or cute and she has learned to say, "and smart". Bella has taken to saying "mommy, after I'm good....(insert whatever it is she's wanting)" and every time I say "Bella is always good, you mean after you make good choices?" and she starts her sentence over. Perhaps I am being a bit rigid or over zealous? Maybe. But I 100% believe that our words shape us, our beliefs, therefore our choices and our lives. Every child will spend his life acting out of what he believes is true about himself and the world at large. Experts say these beliefs are set in place by the time a child is 8 years old. If that holds true it means I have 2 and a half more years to help Bella define who she believes she is and what the world holds.
There are and will be plenty of voices that tell Bella she can't or won't or never will....I am resolved to fill her with as much YES as I can. The enemy of her sweet little soul's number one hope is that he can steal the power of her yes. That she will stumble on the rock of only being beautiful, that she will shrink back her voice in doubt of it's strength, that she will deny herself the capacity of big dreams because she feels unworthy. No, no, no, not on my watch sweet Bean. I will be the weird word police mom that makes you say "I am smart, I am beautiful and I am strong" rather than just complimenting your prettiness. I will hold you to accountable for your actions but I hope to teach you that your value is never changed by outward circumstance and above all that no matter what your voice is that God's voice is ever speaking love and victory inside of you, over you, behind you and before you.
Signed, the unapologetically weird word mom
"The Lord's promise is sure. He speaks no careless word; all He says is purest truth, like silver seven times refined." -- Psalms 14: 6
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.
Bella's daddy told her yes. I tell her yes. And when people tell her she is cute I tell her, "yes you are and you're smart too!". But no matter how many times we tell her she is precious there are a mountain of moments in her growing up waiting to prove to her otherwise. So not only do I tell her she is beautiful....we talk about how Jesus tells her she is beautiful.
No matter what wound the world has left on your heart, no matter how many times you have been told you are not lovely, no matter what there is ONE who says you ARE. Your value is in Christ in you. He calls you His beloved, He shouts over you in delight, He counts the numbers of hairs on your head, He adores you as the apple of His eye. Yes, He knows all you have done, good, bad, ugly and x-rated. He loves you. He knows you forgot to pray yesterday. He thinks you are beautiful. He saw you blow it on the tollway in road rage. He delights in blessing you. There is NOTHING you can do to make Him love you more or make Him love you less. He says, YOU are lovely. The same voice and power that spoke the worlds into existence, placed the stars in the sky, blows the wind and sprinkles the snow calls you loved and lovely. Let Him whisper your beauty to you today.
For all the challenges the summer held this chilly season has held so many smiles! I do not know how to put my finger on it but something has happened…a corner was turned….somewhere when I looked away for the briefest of moments something clicked. Bella is more engaged, she is trying REALLY hard to be more patient, she is attempting new sounds and though they may not be "real" words they are the most beautiful sounds I have EVER heard! And this week, she used a three word sentence. THREE WORDS. Do you wanna know the best part??? Guess what the sentence was? "Love you Mommy" (which came out as "shoves chu mommy" and it was perfect!!) I do not have the skill to convey to you what a balm over my heart those words were to me. She has said "shoves chu" before but never as a "real" sentence…and never so intentionally, to me.
Bella is exploring more creative play. She is so much better on stairs! She can eat with a fork OR a spoon now with little assistance. She can pull up her own pair of pants if they have an elastic waist. And she can pedal her tricycle to rival Lance Armstrong himself.
Bella never complains about how much therapy she is asked to push through every week. She does not seem annoyed that she has to have a gate everywhere so she does not get hurt on the stairs. She is happy. She is joyful. She is brave. She is bold. And she is works so hard. Truly I am in awe of her.
Our victories may seem trivial to many but to us they are blue ribbon, gold medal worthy and often tears of gratitude inducing. When she says "no, no" because she finally thinks she can climb out of the car by herself, well, that is amazing. I have to hold my breath sometimes when she tries new things for fear she will get hurt….and at the same time praise God that she is trying where there was not enough skill to even attempt it just a few months ago. So, I am grateful for all she is doing….what she is trying….where we are headed and for where we have been. God causes all things to work together for good the bible says. ALL things. All things.
Bella likes me to sing with her and lately one of her favs is "Row, Row, Row Your Boat" so Bean and I will just keep rowing the boat and God will keep reminding me that He alone controls the stream.
So much has happened since I last posted in June…perhaps life is simplest for all if I bullet point it out for you?
--Tubes in ear surgery went well, hearing tests as "normal" now
--Summer was tough, but laced with precious, poignant moments AND we have discovered Bella loves to swim! Or in Bella speak "sfvim"
--Sleep study results revealed Bella had SEVERE sleep apnea, she was stopping breathing 149 times a night. So we had a second surgery a few weeks ago to remove her tonsils and adenoids. The thought was by correcting the apnea we would also resolve her sleep issues. Well, that part has not worked. She is up at 4 am. Every. Day.
Yup, that is us in a nut shell. Dare I tell you about the wedding rehearsal? I think I must. My sweet, precious, beautiful friend got engaged. She asked Bella to be her flower girl. I was over the moon. It was mommy heaven for me! I had a special dress made. I ordered new shoes. Bella and I practiced carrying her flower girl basket around the house. Then…then…then it was the night of the rehearsal. I was uneasy all day. I knew. Deep down I knew. The night was a disaster of epic proportions. I am in no way stretching the truth to say it was a full on tragedy. Complete with tears. It is too much to type…the details I mean…suffice to say throwing the flowers was a "thing", waiting was too much, she exploded. Over and over. She was aggressive, she screamed, we both cried. There were apologies and concessions. It was bad. I honestly cannot even type about it.
I got home and got my over tired, over stressed, daughter settled and in bed. Then I cried. Sobbed. Boo-hoo'ed. Hysterically. Then I drank a glass of wine. And then I sobbed some more. My poor Bella Bean, it was all out there now, anything I had been trying to hide from myself was inescapable. She could not do what other kids her age do. Not now, maybe not ever. I was crushed.My heart hurt for how hard the night had been for her. I was embarrassed. I was angry. I was sad. I was mourning all the little fantasies I was giving up in an instant. My tears may have been selfish but they were honest. My eyes were now open and once you see something you can never go back to not seeing it again…..the next day I apologetically removed Bella from the wedding. I liquid papered through every play date and birthday party on our calendar and I talked to Jon about stepping back from some of my responsibilities and commitments. This was us. I had seen what Bella's limits were and that meant those were my limits too. Period.
So, we are where we are. Which typically means we are at home. I say "no" a lot more. And I do not feel guilty. What I do feel is like some days is that I am on an island drifting out to sea and screaming and no one can hear me…..there is a pain I have that now one else can see….it is a deep wound. I am praying that the Lord will soothe it. That His wisdom will guide me to make the best choices for us. I thought I was mourning only what Bella could not have and experience but what I now see is that I am mourning what I no longer have too, what I have let go of, given up, or put a pin in….there is a solitude to my life I never expected.
This may sound terribly melodramatic to you. And that is fine. I can say with the utmost confidence that unless you are raising a special needs child you cannot understand my days or much of what I have typed here. I can sum it up like this….a very sweet and special friend of mine texted me asking how Bella's first week back to school was going…I texted back that she was excited to be back in school but we were having some challenges transitioning….she typed back with sincere love and support "well, she is a smart girl, she will figure it out"….. you hear "challenges transitioning" and you might think a little extra fussiness, maybe a bit more sleepy or clingy. No, "challenges transitioning" in our world means slamming her head repeatedly into her car seat as hard as she can while screaming at the top of her lungs totally inconsolable stopping a only long enough to bite or hit herself for 15 minutes straight. That breaks my mommy heart. Daily.
When Bella wakes up at 4 am every morning she goes in her closet and puts on a pair of socks and a pair of shoes. It is a different set every day. Some mornings she chooses the new pair we ordered for her to wear in the wedding. I like to think she and I together have put on our new pair of shoes…..so we can walk out this journey we are on. In Bella speak she would point at her shoes then at my shoes and say "same"….yes my sweet Bean Bean, we are the same. Where you walk, I walk. In our new shoes. Together.
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.
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