I drive in my car...all the time, and think of clever, witty and insightful words to say on my blog. By the time I get home, get the kids settled and take care of everything else it seems that the blog takes a backseat, yes, Facebook does tend to come first, but I'm not even there very often.
This week has been trying. Saturday, 8 days ago, Will woke up with a horrible fever and Joe took him to the pediatrician (I owe Joe an apology for what I said in Sunday School this morning...the burden of Will's illness fell on all of us!). Will had a double serious ear-infection. I felt really bad for him, but just assumed the ear infections were just part of raising kids, like diapers, and that soon enough they would out grow them...just a pain for everyone involved for the short term. So, Joe and Will (and I think Ella, because I was one of three baby showers in a row) left the pediatricians office with a script for antibiotics and a sad little boy (Will loves Dr. Nale, but not when he's there to see Dr. Nale!). To make a long and dreadful story a little shorter...his ear infection didn't get any better by Monday so we went back and this time he had to get a shot...same thing on Wednesday, and Thursday....poor kid, rough week. Oddly, and thankfully, he sleeps through the night, but he's been miserable and not himself all day long. You might ask why we haven't done tubes. Mainly because my doctor is very conservative and doesn't think they are necessary. I struggle with this decision and like all choices I make as a parent, I will pray and hope to listen for the right answer. For now he is feeling better and about 75% back to himself.
Ella had her second week of riding horses. She loves it. My dad has gotten to come out the last two weeks and help me film the events...this last time he videoed...some day we will get it on here for you all to see. It's not like I see a huge and drastic change yet, but it's only been 2 sessions and I don't really expect her to jump down off the horse and start running beside him...baby steps, baby steps (boy, would I love for her to take more of those!). She is working very hard in so many aspects. We have found her standing, while leaning on things around the house and she even surprised her Sunday School teachers by showing off for them. She loves praise and accolades. My child's love language is for sure Affirmation! It's cute because during Equest therapy she rides at the same time as another little girl her same exact age...and she has curly hair...and those same pink glasses Ella's used to wear...and they watch each other all the time...it's so precious. We are still actively involved at OCH Baylor and I still see tons of progress. I don't take Ella very often anymore because I use that time to just pay all of my attention to Will. It's hard for so many people to be all about Ella and so many places we go are all about her, I try to give him some special attention. Kristie has been wonderful about taking Ella to therapy and reporting back to me on what they are working on each day. We are finished with ECI as of her birthday (5 weeks from today) so we are starting the transition process to get her into school for next year. It will be a good time for her to interact with other children and learn what is expected in a classroom setting. It's only from 8-11 so it's not so bad. Besides, if we choose to go for #3 in the next year or so it will be nice to have her in school for a couple of hours just to get a nap!
I was talking to a friend of my in-laws and she's a friend's mom...so I guess, really, she's a friend; and we talked about what mine and Joe's story looks like since Ella was born. I wish I could go back and remember more details and feelings, but I think God blocked a lot of them out. As we were talking it made me realize how much I still ache for the dreams that were shattered in that hospital in just a few short hours. Today our Sunday School class talked about carrying each others burdens (thanks Michael) and so many of my friends have. I don't know that I've shared enough lately what my burden is right now. I ache for my daughter to stand on her own perfectly straight. I want her to reach for me the way most children reach for their parents. I want to know why she cries and what I can do to make it better. I am tired of feeding her baby food...I've done it for 2.5 years...I hate baby food. I think I stopped feeding it to Will and forced him to feed himself so I wouldn't have to feed it to one more person. I wonder if I've made Will grow up just a little too fast, to compensate for what Ella can't do. My body aches. Anyone who holds a 27 lbs child can tell you that it's heavy...it seems heavier with Ella because she is dead weight (doesn't carry any of her own weight), doesn't hang on and arches back constantly. A friend noticed that I always hold Will in pictures and Joe always holds Ella, it's because holding her take a huge toll on my body (not that 25 lbs Will is easy at all!!). Honestly, I'm waiting on my super toned arms from these kiddos! I want her to wear a tutu...and not try to eat it. I am so tired of finding bruises and bite marks ALL over her body from where she bites herself or harms herself when she "moves". I would never say she is immobile...just not safe when she's going her way. I hate that I can't take them both outside by myself. If Will runs off I can't leave Ella...and he loves to run off! She has a rough time playing on the ground because she gets of blankets and will eat grass in a moments notice. I hate that she can't wear cute, normal sandals and girlie shoes because her orthotics don't fit in them...she needs bulky shoes to support her feet.
These may sound so trivial to you. Most may think "at least she lived"...and you're right. However, that doesn't make these hurt any less. It doesn't keep my heart from wrenching when Ella has friends her exact age (within days) who are doing things that she will never get to experience. We decided this year that Ella wouldn't have any more birthday parties, except with family...she just doesn't have any friends or playmates. She doesn't really enjoy birthday parties or presents or cake...and that makes me sad. I want it to be easier to give her a bath or to get her dressed. I want her to react and talk and have the wide range of emotions that the rest of us experience. Don't get me wrong...a child who is happy 90% of the time is a HUGE blessing, but the fact that she may not feel makes me sad.
So, there is my heart right now. It really isn't so bad day to day, and we really get used to the bulk of it...but sometimes, when I sit down and really think...it's hard.
I would say tonight, at church, I was hit face-to-face with the realization that Ella may never publicly accept Christ. I know she has seen His face and that He has held her in His lap when we weren't allowed to hold her, but an actual profession of faith may never cross her lips...that breaks my heart. I think they, Ella and our Lord, have a special bond so I'm not worried about her salvation, but I sure would love to watch her walk/roll/crawl/scoot/run down the aisle and claim Him as hers....and the other way around.
Oh, and on April 20th Ella will start a new program call A Child Can Do All Things...we are VERY excited about this new experience.
On a parent note...I got lasik a few weeks ago, and it's been wonderful and marvelous, especially when getting up with kids at night. Joe is sick, and coming down with something, but fighting through it. We have been VERY busy and only had one night last week to just hang out and watch TV together...we know it's only a season...I just hope it goes by quickly.
We love you all, even the ones we don't know...thank you for loving us back.