The song Cruel Summer by the Bengals was playing on the neighbor's patio speakers last night. I used to like that song a lot back in the day. As I was listening to it again for the first time in a long time, I realized the Summer Solstice is upon us in just a couple of days and we too will have a cruel summer ahead as we take the time to adjust to our recent news.
Just two weeks ago we were beginning our Summer celebrations and were coming home from the beach. Life seemed so simple. Today I decided to tackle some laundry and realized when I went to switch the load from the wash to the dryer that Alli's clothes were still in there from when I washed them when we got home. Remember, I told you that I don't like to do laundry, so this shouldn't surprise you! But unloading the dryer, I couldn't help but think back to our normal time. I want those days back in the worst way.
My DREAM was to have Allison grow up in a neighborhood with other little girls her age and play until her little heart was content. Since the weather has gotten warmer, Alli has made friends and loves to jump on our neighbor's trampoline and swing on their swing set. There was a time, just a few weeks ago, that she could eat as many popsicles as she wanted and never had to worry. This, of course has changed. She will still be able to do her normal activities, but we will need to monitor her like a hawk until we get her straight, and this will take some time. So, no, it's not all bad but definitely not how I pictured her childhood. Our neighbors--though from this point forward I will refer to them as FRIENDS, have been very supportive of us and in educating their kids about Allison. But, my heart can't help but hurt when they are are having a snack that just a couple of weeks ago Allison could have, and now she can't. I don't think it's fair on either part--for Alli who can't eat it, and for the kids have to stop what they are eating because Alli is there. I don't want them to resent her or not want to play with her because they too, are limited when she's around.
Not are only those stresses running through my mind--making sure our daughter is happy, but I'm wondering how this will affect us financially. I'm sure we will be fine, but there are a lot of unknown variables at this moment. I'm not sure what to do with work and not sure about her daycare. But, I had a dream that we had to move to a dilapitated trailer in the hood to pay for my baby's medical bills, and we had to leave without telling anyone. I was devastated. In the dream, Mike kept smiling through it all as we were walking around this slimy trailer with peeling wallpaper and a bathtub that had dark stains and gurgled. It stunk. I was completely grossed out and in disbelief that this was my new life (much like I am now). I kept asking him, "Are you OK with this?" He would say, "Yep, this is what we have to do." I just kept saying, "I'm not OK." and then I woke up. I was never so thankful to see my bedroom walls in ALL my life, but we are still living what most would consider a bad dream.
I know I won't feel this way forever, but from what I understand there is a grieving process and I am in the middle of it. I'm facing going back to work next week and am thinking about this week I've had with my little girl and how far we've come. How will this work for everyone else who will care for her in my absence?
My sweet daughter . . . you tell it like it is. Given the diagnosis your baby has been given, you are handling it like a warrior. The fact that you are dreaming that Mike is right there with you, tells much about the man you married and your appreciation for his support. Any parent who is given news that their child has special needs and will have to adjust to those needs to maintain health, tears at the heart. If you love your child, that is just the way it is. Yes, you will have trials. Yes, you will deal with them. As will Alli. Right now, it's especially hard because of her age. I don't know that it will ever be "easy" but it will become manageable. As you are learning, I'm sure, day to day. You and Mike and Alli have a hard road ahead as a family. But your family and Mike's family will support you as well, as loving families do. We are all blessed in that way. I have had some of the same thoughts as you are verbalizing so eloquently - feelings of being helpless, of wanting it all back the way it was just a few short days ago. When extreme life changes happen so unexpectedly, all one can do is be thankful for each blessing, big or small, as they happen. I know you are thankful. One day at a time, sweet girl. Sometimes, it may be just one minute at a time. I love you so much. We are so very proud of you. For all you do. For who you are. You are our greatest blessing little Sasha bird.
ReplyDeleteSasha - i don't really know what to say - I dont have any wonderful words of wisdom....but I can say - on a different level, of course - I have had - and am still living - life changing events that were beyond my control, and I too, want my old life back.....but life does go on, no matter what - and this too shall pass.....it will get easier, even though it will never be the same. The heaviness will come and go. I think about you all the time....consider yourself hugged regularly :)
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