Random thoughts on belonging and searching

Each day that passes I find it easier and easier to retreat into my self imposed isolation. Sounds kind of dark doesn't it?Actually,it can be sometimes,if I allow it to be. As we settle in and find Zoey in a stable place, it lends more time to review and revisit certain aspects about the last 17 months. When you are in the midst of crisis it is much easier to operate in survival mode and ignore some of the happenings around you. Yesterday I began my day in tears and ended it much the same. The middle part fine ,actually better then fine.Everyday stuff.The day to day living that no matter how crazy the day might be, at the end of the day I feel we have made the most of our moments. The morning thing was so out of no where.Mark and Zoey have a special routine of showering together everyday. It's very precious. I was getting ready to hand her to him when I mentioned that I had talked to my good friend Shelby the day before. I love Shelby because our conversations are always so not about where my life is. She is the mom of three. Her youngest is 2 weeks older than Zoey.Charlotte is her name and she's just a doll. Well,I barely got Shelby's name out when I started crying. I began telling Mark that while we were on the phone Charlotte was chitter chattering and getting into mischief. At one point Shelby went looking for her and found she had emptied out the entire shoe basket. Shelby went on to tell me that Charlotte has a shoe fetish. Loves shoes. Follows you around and asks for the shoes off your feet. The visual was such a reality check for me. Although I didn't realize it at that moment. It wasn't until later that it hit me. In that moment of listening to Shelby, I smiled , a genuine smile, and told Shelby that I probably took it very much for granted when my others toddled around the house with shoes that were 10 sizes too big for them.I told Mark that I could never imagine Zoey ever doing something like that.Will she ever be capable of such a complex task or activity? My little sweetie ,who I wonder daily, as I sign to her and talk to her,what does she really understand? I once said that Zoey knows all she will ever need to know and that is, we love her beyond words. Beyond even our understanding. But there are those moments when my mind wanders. I think not only about the Down syndrome aspect but the stroke and the Infantile Spasms and the combination of the three and I wonder and sometimes,not often ,I get angry for her. Maybe a little for us too,lets be honest. I took my little love from the shower,she snuggled into me and I kissed her and memorized each part of her perfect body as I massaged her lotion in.She flashed me numerous trademark Zoey smiles and I pulled it together and went on with my day. Evening came,quite stubbornly I might add. Mark has had 7 days without a day off and 12 more days to follow before another day off.. He got home around eight. Have you ever heard the expression"Stick a fork in me I'm done" Well, my twist is, "Stick a PITCH fork in me,I'm SO done".That accurately described my mood. Zoey went down,like the dream she is.She has been sleeping entirely through the night again for weeks now. Heavenly for us all.Mark read to the little guys and I sat down with the computer.That's when the second wave of sadness began to take over. I realized how alone I am. That for the most part my days are spent,just me and the kids,not much contact with another adult. An occasional phone call here or there.The fact I don't have a husband home to talk to most nights makes it all the harder. So I usually sit alone with my thoughts. Which sometimes is not good.After reading The Mother at The Swings I have spent a great deal of time evaluating my relationships. I began thinking of the few "rocks" in my life that have stuck by us, that I am forever grateful for. A few new "rocks" that have entered our lives that I feel blessed to have found. The great number of "wanna be's" that just can't find their way to us again and all the gingerbread men that have run so far away. Sad some of it, really.Even family and friends that have never,ever read my blog. Maybe too afraid to see what we really face daily. Zoey faces.Where we have been .Where we hope to go.Some were no where to be found during the ACTH days. Some who have now found their way back as things have gotten better. But me unable to truly let them back in.Where were they during the tough times? They are slowly circling back only to reap the rewards of kisses,hugs and snuggles from the now stable Zoey but where they for the 20 hour g-tube feeds,injections,seizures and so on. What made it so difficult to call or stop by? Just keep me company. I have always had a open door, open question policy.I have always kept an open heart.At least tried to. I have always acknowledged how this has been a journey for everyone that surrounds us. I have tried to understand that and others feelings and their very personal ways of coping.But when push comes to shove, there have been very few that have walked the trenches along side us. It is one reason I hate to venture too far. Afraid to run into people. Why do I want to answer,"How are you guys doing?",to someone who has virtually been non existent over the last 17 months. Do they really care or is it just the obligatory question? Do they want me to begin spewing the often ugly truth. Let's see...."We lost our house, our savings,our retirement,Zoeys right hemisphere,yes of her brain, may have to be removed at some later date, we feed her through a tube in her stomach most of the time, her blood disorder might very well come back,we're trying to restore normalcy to the other kids lives, but hey other than those little tid bits,great,absolutely great"Maybe while Zoey is in this stable place, now comes the time to seek out support.But from where and what community? I often feel not even part of the Down syndrome community.True. Hard to speak but true. My own hang up?Absolutely.Why,maybe because I have only been in contact with one other family that has had a child hit as hard as Zoey. I often cannot believe some of the children out there that are sitting,crawling even walking.Some,most ,younger than Zoey.Do I feel that Zoey has been screwed in some ways?Yep,I do.It becomes a matter of feeling as though I'm an island out here,once again.Where exactly do I belong? One thing for certain,as difficult as a conclusion it is to come to,the life before Zoey is not the place.Sure,certain aspects remain constant but the casualties of friendships and relationships becomes more and more apparent.I cried myself to sleep last night. That deep,out of nowhere,often not a sound coming out, cry. Unable to articulate to Mark it's origin. Unable to make sense of it myself. I have become tired of the constant looking for reasons,purpose,placement and compartments. I am just tired. It is often after the crisis somewhat subsides that one realizes how absolutely tired you are.I come from a small upstate NY town. I often yearn to go back to such a place.Any place that feels slower. Where we are just virtual unknowns. Not," did you hear about the Needham's baby girl". Most well meaning but absolutely draining.I continue to seek that peace that I so often speak of. That tattoo,yes tattoo,for those of you new to my blog,my life. You can catch a look of it in my archives if you feel compelled. It's a dove with and olive branch,on my foot, that I had done the night before Zoey's heart surgery. We are coming up on that year anniversary. I had hoped that peace would have inhabited my heart more often this last year. That the Holy Spirit would have brought more peace and acceptance to me.Acceptance of others mostly.Acceptance not of Zoey and how she came to use but rather acceptance for all she has had to endure to be here.Instead it has been a constant struggle.I have a long way to go. Obviously.I continue that battle between such absolute joy at where we are and continually praying for that daily strength to hold on to my faith in where we are going.