We were rebels today. We canceled Elijah's post-post-op appointment because the 12:30 time slot that we tried to reschedule (we are becoming increasingly glad that neurology is not his main specialty) would have thrown Elijah's entire nap/day off schedule. His incision looks great, so we are going to assume it is ok to bathe the dirty boy as we attempt to make another post-post-op appointment.
Yes, we are super protective of his sleep schedule and I'm very proud of that!
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A few months ago I submitted Elijah's name to the CHD awareness quilt project. Each handmade quilt block honors a specific child with Congenital Heart Disease. Forty-two blocks are put together to create a quilt that travels around the country to promote CHD awareness. There are many quilts that have been put together by generous people donating their time for this cause.
When I entered Elijah's submission for a quilt block, I was asked to write about a few of his main interests so they could incorporate those things onto his block. I don't remember exactly what I wrote, but what they created for him was absolutely perfect. I opened the image that was sent to me this past weekend and I was overcome with emotion.
Once I wiped away my tears, I called Elijah over and sat him on my lap so he could see a picture of his very own quilt block. I am not kidding you, he excitedly said, "GUCK! (truck!) CAW! (car!) NNN-DA! (zebra!) EE-EE-OO-OO (monkey noises) OOK! (book!) OB! (Bob The Tomato)," with no pauses in between words. Oh sweet boy, this is indeed your CHD square!
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On a somewhat related topic, I have discovered a very intense connection with an object that we "acquired" from Elijah's most recent hospital stay. We always seem to come home with a hospital-owned object or two after we have spent a few days there. Most of the time it is accidental and we get home and go, "Oh look! I guess Elijah has some more purple pajama pants!" This time, though, we acquired a small blanket not entirely by accident. I wouldn't call it theft, either. As we packed our things to leave the hospital, it ended up getting stacked with the rest of our blankets and we just didn't make much of an effort to pull it out.
When we got home I started to fold up the little blanket and drape it over the chair in Elijah's room along with the rest of his blankets when I was overcome with a feeling I couldn't explain. I felt a strange, close connection with it. I went into Dan's and my bedroom and tucked it under the covers on my side of the bed, not really knowing why. Every night since then, I have slept snuggled up to that thing as tightly as if it were one of Voldemort's horcruxes (sorry, Harry Potter on the brain).
I can't put into words why this blanket is so important to me. I feel why it is important, but I'm not sure there are words to describe that feeling. The only thing I can think to say is that Elijah literally sweat, bled and cried tears of emotional and physical pain onto that very blanket, and I want something tangible that won't let me forget every part of that experience. Maybe it is a reminder of his strength or a reminder of the bond we share or a reminder of how far he has come or a reminder of what God has done for us, or maybe all of that.
All I know is that it somehow brings me comfort to wrap my arms tightly around it as I fall into my dreams.
9 comments:
I LOVE his quilt square!! I wish I'd thought of Veggie tales for Vaeh's... her's has teddy bears (she was quite little when I requested it:0))
Glad you're protective of his sleep! I don't know how Elijah is, but Vaeh is a grumpy gus if she doesn't get enough!
Hello,
My name is Sara Huelsbergen and I have been following Elijah's blog for some time now. On February 19, 2009 my husband and I welcomed our first child to this world. Little did we know how our lives would change. Olivia was born 2 wks before her due date weighing 5lbs 14oz. We were so happy and looking forward to all the adventures we would have. The day we left the hospital the Dr. who did the exam on Olivia heard a heart murmur. Olivia was whisked out of the room to have a chest x-ray and EKG. They did not see anything abnormal but wanted us to follow up with her pediatrician. Two days later we saw Olivia's Dr. and he said the murmur is probably benign but he wanted us to see a cardiologist just in case. March 5th, 2009 the day our lives changed forever. Olivia went to see the cardiologist and had an ECHO done. A minute or two after the ultrasound started the technician had the Dr come in. She proceeded to tell us our daughter had a severe heart defect and she was admitting her right away to the ICU. I felt like I had been punched in the stomach. I could not believe what I was hearing. Olivia was diagnosed with Tetralogy of fallot, pulmonary atresia and MAPCAS. She had her first surgery March 13th to have a RV to PA Conduit put in. Ever since she was born she had also had high Bilirubin levels which continued to go up. On Easter she was readmitted to the hospital to have a GI work up done. After spending a week in hospital and many tests (including liver biopsy) she was diagnosed with Alagille Syndrome. Elijah may have been tested for this. Again we thought can we please catch a break. I did not mention she only has one functioning kidney. There are so many similarities in what Elijah and Olivia have endured in their short lives. Often when I read your blog I think I could be writing this. Right now Olivia is almost 5 months and we are waiting for her sats to start dropping so she can have her next surgery. They will replace the conduit and maybe, if her pulmonary arteries have grown, have a full repair done. I am dreading this next surgery. I hate the hospital. Seeing all the sick little babies, seeing my baby hooked up to all the tubes and monitors, hearing the constant beeping of the machines. It is a nightmare. My friends are very supportive,, but unless you have seen your child this way, you have now idea what we go through. Sorry to ramble but I feel you know what we have been through. If you are interested my husband and I started a blog for Olivia. It is oliviahuelsbergen.blogspot.com. I'm so glad to see Elijah doing so well after his latest surgery.
Take Care,
Sara
Love his quilt square... Evan also has one. Recently they contacted me and asked to use Evan's story - so cool! I have a "Heart Mender" it is handcrafted from hardwood they card that came with it says, "this heart mender has been specially designed to fit your hand and lighten your heart. The natural exotic wood will become more beautiful as you hold it and rub it, allowing your worries and stress to melt away." One of my heart Mama's gave this to me at Evan's first cath and when we are going through caths, surgeries, appointments this is a must have for me.
I love his quilt square, very pretty!
I cried when I read your blog today, what a brave and loving mama!!!
Lots of love xoxo
I love Elijah's quilt square! It is perfect!! I think it is very fitting for the king!
I am so happy to hear that he is doing so well. I hope that you were able to get that stinky boy all cleaned up!
Harry Potter tomorrow!! I CAN'T WAIT!!
<3,
Jennifer
What a cute quilt square. Thanks for sharing. I went and signed Harrison up for one. You are not crazy for taking that blanket that you more than paid for. We too, took something after William's surgery with Nagib. This is the first year he has not slept in the hospital pajamas that he slept in after his brain surgery. They are too small now, and I can't get rid of them. It is the feeling of never seeing them again.
Strange, I don't have any hospital item from all of Harrison's surgeries though. He does have the quilt the volunteers made him and he loves it, but nothing that I subconsciously and intentionally took.
Hi-
I would love some names of moms who are talented at fattening up their babes :). Glad Elijah's doing well!!
I'm so late commenting on this one!
I loved the whole post....
Especially the blanket that you stole. I totally get it...and if there are any questions, as we cross into heaven...I will surely stand in the gap for you. ;0)
Squeeze him for me!
What a perfect quilt square for Elijah! It must be so cute to hear him name all his favorite things!
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