We have 40 days. -- I wish I didn't know this kind of terror. It's really hard to stay normal, to give her and our son a normal day to day life when inside you just want to grab them every second and tell them how much you love them. I feel like a mother lion wanting to protect her cubs. Going to see any doctor right now feels like I'm surrendering her over vs. coming to them for help. I can't wait for this to just be done and to see Justice playing again without a major surgery looming over our heads.
Next week we also have to go and look at/pick out a wheelchair for Justice. Not that she'll need it all the time but her Lymphedema and Paresthesia is just getting so bad that she's having troubles walking more than 1 1/2 blocks without her feet swelling up and bruising. It's very painful for her and in combination with all her surgeries, the fact that she now weighs half my weight and I can no longer carrier her very far, we need to swallow our pride and do what is best for Justice. I just never thought this day would come. It really never crossed my mind she would someday need a wheelchair! It scares me how much we seem to be going backwards. I just have to put it out of my mind.
We will also be seeing quite a few doctors and specialists in the upcomming weeks. Keeping them all straight and remembering what each one needs to know is really a lot of work especially now that school has started. I'm finding myself going from fractions to parestesia to Chiari malformations to spelling words to genetic testing back to dolphins. Sometimes I wonder if I'm not already on that funny farm and everyone around me just isn't telling me because they don't want to upset me or ruin my fantacy world. :o)
The amazing thing through all of this is, as down and as low as it seems, I (or other parents that go through similar things) could never dream of giving it up. Oh for a cure, yes, but every moment I am so incredibly thankful she is my daughter. If I have to worry, to shed tears, to pray with my depths of my heart...What better reason could there be than for Justice?
You're absolutely right - in an instant I would see Lauren's syndrome gone but only for her sake and what she has and will go through. For me, it's like a right of passage. I can do this. I can do this for my daughter and it will make us all stronger. I would never wish it on someone else but wouldn't wish it gone if it was only for my benefit...
ReplyDeleteI'm so sorry to hear about the need for a wheelchair. When Hayden was two, and not yet walking, a neurologist suggested we maybe should think of getting a wheelchair because he may never walk. For some reason, the thought of having a wheelchair just meant "permanently disabled." Which is silly because he's disabled regardless. I can't explain the fear I had of it...I just remember that was the last thing I wanted to add to our list of home medical equipment.
ReplyDeleteNow that the day is here I really have mixed emotions. On one hand, we have to do something to help her. I can't carry her anymore or have her continue to walk knowing how much pain she will end up being in. On the other hand, something in me keeps saying "This is not how it's supposed to be. This is not what we've worked so hard for. Why are we going backwards?"--At least she's excited about it. But there again, I don't want her disappointed if our insurance says no.--I guess these are just feeling you only can really understand if you've been through something like it....Today, I wish I didn't understand. I wish we were going to pick out new boots or a pretty dress. I wish that was our great dilemma.
ReplyDeleteThank you for your support, it's really needed today.