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.

1 Comments:

kellie said...

You always write from the heart and that alone brings tears to my eyes! Someone recently told me, "All children need is Love and Food. That's it, everything else is extra." Bella is surrounded by love! You are a terrific mom!!

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