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.