Straight Talk On The Twins.

My girls have IQ’s around 50. My girls have auto immune deficiencies. My girls have learning disabilities. My girls have growth issues. And at some point, I think a needed speech would go something like this. “I love you girls but you will never be like everyone else. You are delayed, you cannot thrive like the rest of us. You will need a lot of support your entire lives. You will probably never have babies. You may never be married. You will live in an assisted group home and you will most likely never thrive like most people. But I will be here, always. I love you more than I love myself. I will always give you everything you need, putting you before my own needs. You are loved beyond measure. Your failure is my failure. Yet we push to success, always.”

To some degree, I believe they know they are different. Slower. Needing extra attention where most their age don’t. Forget age.. all these past ten school years. I haven’t lost hope in progression or in miracles but the more time goes by, the more honest I need to be with myself.

Years ago I knew they had some health and learning issues but I was always like meh, they will improve and they will grow out of it all. It was a cozy place of denial for a single parent like myself to reside, only seeing ‘the good’. The busier things got involving them as in the months with 3 or 4 specialist appointments and bouts of bad or saddening news, I brushed it off as meh, now is a busy time but it will blow over. It hasn’t blown over. It only gets more complicated and worrisome.

The sizeable transformation has now begun to move them from child to adult special needs status or handicapped, as it were. Stacks of paperwork has been filled and is being filed. Applications for government funded program AISH is in the soon to be works. Assisted living workers will be meeting with us at some point, though it’s not like the girls will be any where near ready to be out of the house within I’d guesstimate the next 5 or so years minimum. And frankly I’m fine with that. There’s no rush for these little angels to be trying to figure out the real world. Continue to live in ours as long as it takes.

I’ll always have hope in every area of my life, to the end. Maybe it’s just as strong in this scenario because 16 years of their lives later and there still is no diagnosis. No diagnosis means no four walled concrete map of what is to be expected so there in lies tons of gaps where hope squeezes in.

At 16, they show no signs of puberty, save some minor breast development with Lex. No body hair, body odor, hormonal imbalances (that I can see) and no periods. This process can be forced through other meds but is that the way to go? This is where the probability of no pregnancies is birthed, pun always intended.

(In the ICU during Lex’s 39 day admission. Such a big smile for a girl with 4 IV needles, a raging fever, oxygen and a catheter when this was captured.)

I don’t usually stop and take the time to feel the weight that is being these girls single parent. Days blur into the next and life carries on. I’m so beyond used to the cacophony that goes on around here to acknowledge how effed up it is. In the end, I was blessed with these two characters and it is my duty to keep on giving the optimal care that they need. We all need each other and if this was taken from me, I would die myself. Forever grateful.

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