Wednesday, July 20, 2011

Change Is Hard

I've been meaning to write this post for a while. So many little things that happen that I want to reflect on, or dig deeper into. We finally came home last Wednesday from the hospital and I have to share one of the most precious memories during these trials that I know I'll have. I pulled up to the front of the hospital with the van to pick Alaina up with her daddy. They had given her a ride in one of the wagons, because she couldn't walk. I watched as they pulled the wagon through the turning doors, and a gust of wind blew against her face and hair. She burst out laughing like a crazy person and said really high pitched and excited, "Wind! Feel that? Feel the wind?!"

She was so thrilled! Stuck in the hospital for 3 weeks, never being able to leave that floor....refusing to play in the playroom....the feel of the wind on her skin brought the biggest smile to her face. We take so much for granted.....and then on the way home, she got excited about seeing birds, and cars...it was all finally real to her. She was really going home. She didn't believe me that morning, I don't think....she didn't smile or act excited when I mentioned to her we'd finally be able to go home. But seeing that shimmer of a glimpse of old Alaina was so bitter sweet. I hated that she had to miss that stuff so much but was elated to see her be well enough to enjoy it again.

This first week back home has definitely been an adjustment. We knew it would be. We're grateful that Chad, my husband, has been blessed by wonderful employers who are letting him work from home the next four months. Since Alaina can't really walk from her time spent at the hospital and the achiness of her chemo (apparently it can make her legs achy), she is usually always on the couch...and the steroids make her want to eat all the time. ALL the time, I am not exaggerating. You would not believe the amount of food this girl can fit in that little tummy of hers! Because of this, it's like having two infants at home...her, and her baby brother, who turns 1 month tomorrow. She's gained at least 10 Ibs, due to the steroids and the eating. We shaved her hair over the weekend because it was coming out in clumps and ended up all over the house and in food and on cloths and in mouths....it just needed to be done, and Daddy shaved his with her. She doesn't seem to mind it, and we made sure she was going to be okay with it. She likes how soft it is.

I know my mind is going in several different places at once with this post so it may not make any sense. But this is theraputic for me, to share the trials and struggles we're going through. My biggest struggle right now is seeing how much she's changed and how much she has had to grow up. She does NOT look like a 2 1/2 year old nor acts like one and it breaks my heart. The other day, she sat in our front room on the couch and stared out the window for almost an hour. She didn't want to move when I asked her. I asked her what she wanted, she kept saying to ride in the wagon (I'd told her we would once daddy got home). The look on her face was soooo sad the entire time and I'd give anything to know what she was thinking. This can't be right, this depression....so many nurses and other people have mentioned how kids bounce back and start playing, but not Alaina. She refuses to play, hardly laughs (though is getting around to doing it more often these past few days) or smiles. Her personal space is something she takes very seriously, when before you could love and kiss and hug her all you wanted. There are many times in the day daddy or I are pushed away and told firmly, "No! Stop, don't touch me." We understand where it comes from...the nurses and doctors messing with he rin the hospital, and worst of all, her first bone marrow test done the day she was admitted into the hospital....she could not be put out for that because of her blood levels...so my poor two-year-old had to be awake, with a basic topical numbing, as they stuck a needle into her BONE. I can't even begin to imagine how traumatic that was for her (and my husband who was there with her....I was still in the hospital with Anderson). He said it got so bad she screamed, plain as day (and Alaina-speech isn't always plain as day) "GET ME OUTTA HERE!"

So personal space? Yes, we get that. It hurts, and we try not to take it personal, but it's hard. We love her SO much. And her tummy, it's always giving her problems....the chemo constipates, and then there's all the food she's eating, and the gas. It's so extended, her belly button is almost all the way out. She's so heavy she can hardly keep her own weight up let alone balance. She can't get on or off furniture by herself, and needs assistance when she's walking. She use to be fearless, and now fears almost everything. She use to be tough, and now the smallest bump makes her cry. She's done a complete 180 personality wise and I'm terrified I'll never see the old Alaina. People say she'll come back, that it's all due to the steroids, but I just KNOW this entire episode of her life HAS changed her. That she'll never be completely the person she was before. And I know, people change, it's part of life, but to have to do it SO early.....to lose all the wonderful things that made her HER. It kills me. It really does. I miss that little girl SO much. I love who she is now, I'll love her no matter what personality she takes on, but the memories of her little quirks are fading and I'm having a hard time holding onto them and it's scary to think I might forget them.

We take so much for granted in life. We really do. She use to sneak out of her room after we put her to bed, creep down the hall, and watch us in the living room until we noticed her. We'd get onto her, tell he rto go back to bed, but laugh under our breath because despite her rebelliousness, she was so stinkin' cute. It was a headache many nights, when we just wanted some peace to ourselves and it took her an hour and a half to finally go to sleep. And she'd lay in her bed and roleplay with her animals in her little voice, and it'd be nearly 10 o'clock and I'd be, "Alaina, go to bed already!" What I'd give to have that again! Now, she tells us she's tired, lays on her back (or asks us to roll her on her side because she can't do it) and closes her eyes. Her fingers gently rub Bunny's threads until she falls asleep. And that's it. No role playing, no being mischievous....and I miss it. I see mother's with little girls her age in the grocery store and I miss that. I miss being able to take her with me on my errands. Tantrums and all (though she was usually a really great "bye bye kid"). Now, she just always seems so sad. So sad. And I don't know how to talk to her, how to help her.

Tomorrow (technically today since it's now past midnight) we take her back to the doc because we're worried she may have a UTI. I'm going to ask the doc about physical therapy...I really think she needs it, especially since she doesn't WANT to do anything but sit. . . . (and eat). I'm also going to ask if we should consider a play therapist or wait until the steroids are out of her system and see how she does then.....her last dose is Saturday morning and it takes about a week for kiddos to start feeling normal again.

Her big test is this Friday, where they test the bone marrow again for cancer cells, and the blood as well. She has to have less than 0.01% for her to stay in the High Risk category, otherwise she goes to VERY high risk, which we know involves a bone marrow transplant. Please pray for negative cancer cells on her test results, which we should get back Tuesday. Also please pray for her big sister. She's also having to grow up too much this summer. I'm trying my best to put aside time for her during all this crazy chaos (and poor little Anderson has just been collateral damage, slung along for the ride through all of this....) Averie is having some major behavioral issues which I know is mostly due to all the change in her life and we're doing our best to help her through it by discipline and understanding and communication but it's still really hard. I hate having to be that "mean" person when I have to put my foot down with her, but I know it's what she needs.

This entry has become a novel. Today was a rough day and I think just getting all of these thoughts out helps. Anderson has reflux, so I had to take him to the docs today, and all these little negative things just kept happening through out the day. Tomorrow morning (or technically this morning) is Alaina's appt for her possible UTI, Thursday morning is my postpartum appointment, and then Friday is Averie's birthday and Alaina's MRD test, and Saturday is Averie's slumber party.....It sounds like so much when I type it all out but I know I can handle it.....just pray I get more sleep than I've been getting, so my mood stays positive! It doesn't help when I have both the baby and Alaina waking up at 1am and 4am to eat! (Macaroni and cheetos!)

Change is hard....but I know I can adapt. I already am. But it's the change in my little girls that I have no control over that really hurts.

4 comments:

  1. Still praying for you! Hang in there, Christa! I'll pray you can get more rest.

    Amy

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  2. Prayers and candles, absolutely.
    Take care, Christa.

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  3. Always remember God will never give you more than you can handle. Asa and I will pray for Alaina's little spirit to be happy and joyous. And I pray for you as her mother and the rest of the family to have rest and peace. Give your worries to the Lord and remember fear not, for he is with you. ALWAYS.
    Blessings,
    Deanna (Asa's mom)

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  4. Hi Christa,

    My name is Marah and I'm from DKMS, the world's largest bone marrow donor ceneter. I just read your amazing blog and would love a chance to speak to you (unfortunately, I don't see any e-mail address listed on your site). I know this is a very difficult time for you, but if you have a chance, please send me an e-mail to Marah@dkmsamericas.org or give me a call at 212-209-6751. You can look at our website at www.GetSwabbed.org. I hope to hear from you.

    I will be keeping you, Alaina and the rest of your family in my thoughts.

    Warmly,
    Marah

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