New Shoes

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… 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.


KelK said...

Another friend of mine who has a child with Downs, recently said to me with tears in her eyes "You have NO idea how hard it is." I had never heard a more serious comment in my life. It really hit me. I could only quietly tell her, "You are right, I don't. And there are no words..." She sadly smiled and said, "You are right... there are no words...." (I will never forget this conversation...)

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