A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Sunday, April 6, 2014

Still Waiting


I realized something.  The adoption process, as frustrating as it is, was good preparation for me.  In some ways, this time is similar to our waiting periods for Hannah, Katie, and Luke.  At the UCSF appointment in February, a syndrome was mentioned.  I turned to Dr. Google, and I can see it.  Luke has a lot of the symptoms.

Like during the adoption, I turn to the internet to seek out any information I can find.  If this is really It, then there's a research organization, a parent support network, etc.  It's even on Social Security's list of compassionate allowances, so if we chose to seek SSI for him at some point, the process would be easier with that diagnosis.


Another way this time mimics our adoption waits is that we're depending on other people to do their jobs in a timely manner.  And most of the time, there's nothing we can do to make it go even a minute faster.  Right now, we wait for the blood and urine test orders to wind their way through the system and result in lab paperwork being mailed to us so we can take Luke in to be poked.  Again.  (They cringe when they see him.  His fat little arms have NO visible veins.)


In the meantime, I'm watching dry videos of research presentations, and tracking down obscure drug names, and bookmarking clinical trials.  Not quite like watching Gotcha Day videos on YouTube, but close enough to remind me.

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11 comments:

  1. Is the syndrome you think it could be treatable? Something you can handle? I just spent some time looking at colleges for my older kids and then spent sometime with my friend who has a child with issues like my new child may have, these things occurred 2 days in a row and I discovered some things about my family. Adoption I feel is a wonderful thing, and I still love it, but sadly because my boys are older and my daughter's "suspected" and not 100 percent confirmed SN, could be what my friends child does have, I realized that I was foolish to have taken this step at this point to adopt at this stage of my families lives. While my new child is not super severe, not having other kids her age, and then having older kids who want me in their lives, like they are used to. Well, let's just say, all of this is just not compatible as a whole. Had her SN been something different, maybe it would have worked better, or made sense or even if it had been 10 years ago, totally doable, but today, at present time, it's been obvious, it wasnt the right timing.at.all. I have been thinking long and hard since realizing this, what we should do. We feel capable of handling her overall, but to give her entirely what she needs, is impossible with our current family structure and that fact, has been hard to accept! Hubby and I feel pulled in 2 very different directions, and with her issues requiring more help, and the desire for us to give her a sibling, which we feel she would love, as would we, but we feel like its unfair WHERE we are at to go forward with that. I look at your issues with Luke and feel overall, you are in the midst of parenting so many kids of ALL ages and why you have been able to hang on. In my case, hubby and I were almost empty nesters, my 2 older kids are accustomed to a life where we as a family are together for EVERYTHING, and this now has changed. And while they love their little sibling, truly, she can't return the relationship the same with them, so in their minds, they have lost their family and their excitement over a new addition that isn't quite there, has been really hard on them. While our new child is making progress, still we are left in a very awkward situation of how to proceed. We want her, but overall it just feels wrong for everyone involved, and has from the get go. While things are looking up for her, still in the coming months, we will need to make some hard decisions and to top it all off, my health remains unchanged. Just know I Will be continuing to pray for your family and hope that Luke gets his diagnoses. For us, we look to God for why this child is here. In the end, we love her and want only the best for her and our family, so much to think about!

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    1. No, the syndrome has no cure, and barely any treatment.

      I appreciate your prayers, especially since you are going through such a struggle yourself.

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    2. My struggle is tiny compared to yours, as my daughter, other then delays, so far is super healthy. In my case, I think the hardest thing is not knowing what the future holds for her and feeling caught between 2 very different worlds, otherwise she overall is pretty easy to care for. She is making some big progress and is signing lots of words now, we rarely have any behavior issues, but she does get a slight bit panicky in certain situation and she stims with her hands a lot, though she is aware and will react to us, wanting to sit and play with us. We too feel like she is a mystery and unraveling her has been ongoing and that gets tiring for sure. I just can't believe how much you have on your plate and how you do it all, particularly with Luke. In your situation, honestly I would have given up by now and found a new home for him, as I am not that strong! :-( Though, So far, I just can't fathom giving up our girl, so easier thought, then done. We have been getting more attached to her and our families adore her, issues and all, and I pray daily God works it all out because we do Love her and want the best for her. At times I just feel like, are WE the best for her? Our SW always tells us we are doing amazingly well, that we are in the minority of people who have almost no issues at all, not the norm according to him. But sheesh, I feel like, really, then why do I feel so old. Okay, to my defense I am in my 40s and haven't parented a small child in over a decade, so I guess the shock hasn't wore off yet and add a SN child and some days, I feel like I have aged 20 years!!! LOL.
      Well got to go, I wish your family the best and pray you receive the answers you seek for Luke soon! Keep us updated, so we can continue to pray specifically for his and your needs, all we can do at times in our circumstances to take it to prayer, hope and believe we are on these paths for a very special reason! Irregardless, we are sure learning a lot, huh? Just crazy!

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  2. Hi Shecki,
    I normally look at your blog on my phone and today was on the computer. So, I got a better look at your pic on the bridge....it's precious...I love it. :)
    Danette

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    1. Why thank you! :) Darcy took them for us. We got some good ones that day.

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  3. Praying for you as you wait!

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  4. I can only imagine how trying this must be. We often struggle with the timing of things... time is something we can't control and it tends to be the thing that mockingly teaches us patience. I'm praying for you and your family Shecki. May you find strength and comfort in this period of waiting.
    xoxo

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    1. Thanks, Jennifer. I think some days, prayer is all that keeps us going.

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  5. Praying for your family! Why in the world is it taking this long to order some blood tests?? Is it an insurance issue? (we have Kaiser, so I'm used to the Dr. just sending the lab an email work order and we're done!) Also, our youngest adopted dd has dev. delays. (mild MR). She also has a slight chromosome abnormality and I was certain she had the symptoms of a syndrome linked to her chromosome duplication. Well, the geneticist completely disagrees with me, and says she doesn't have it. Just saying, Google can be misleading, although I understand the desire to try and figure out Luke's puzzle! Praying you get answers soon!

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    1. I honestly don't know what the holdup is. It was supposed to go from UCSF to UC Davis, to us. Somebody somewhere hasn't done their part yet.

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