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
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!
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.
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.