Things have been going pretty well lately. Normally I would be feeling anxious about having to get up to go back to work in about 6 hours, but I feel so blessed lately that nothing seems to get me down. Hopefully the feeling will last past Monday, but if it doesn't, it was a good ride.
The Knights of Columbus held their benefit breakfast for Adeline today. I am embarrassed to admit that my stomach was in knots over it yesterday. I even googled "how you should feel when someone is throwing a benefit for your sick child". I didn't get any results...I'll have to enter my own sometime. All of the generosity we have been experiencing has raised feelings and emotions that I can't even describe. I have never been very good at accepting help. I love to give it, and I love the feeling I get when someone accepts it, but for some reason it's hard for me to accept. But when we walked into the gym and saw all of the familiar (and not so familiar) faces there...family and friends that had traveled from Sheldon and beyond, friends and coworkers, parishioners...it was like my heart just opened for me and I was able to take it all in. And it felt good. Obviously no one would ever want to experience having a sick child, but God is using the love and support of so many people to lift us up and carry us through this journey. I can't wait tell Adeline about everything everyone has done for her and for us. And to teach her early in life that through God and through the love that God expresses through his people, anything is possible. I have always been taught that, but now we have lived it.
The world is full of amazing people.
I had better go back to work. Adeline is getting pretty spoiled. We started her on a 12 step program to stop the Lortab - and she has succeeded. We are down to Tylenol and supplemental Iron. At first, I gave her the "normal" dose of Tylenol that a baby her age would get and she was just miserable. I felt bad when I looked at her discharge instructions and found that she was supposed to get almost twice that. Now, for the most part, she is able to find relief from pain as long as we keep on top of the Tylenol. She is beginning to show signs of separation anxiety, which is normal for babies her age, but also normal for children that have experienced medical trauma. Grandma Hot Dog arrived yesterday from Davenport. She will be taking care of Adeline this week. My mom plans on taking care of her the following week. Grandma Hot Dog and my mom have already discussed their plan of care, which involves lots of loving and holding and cuddling (there is no better medicine!) - but which also means she will be even more spoiled. Joann will have to have her own 12 step program for Adeline when she returns to daycare.
Adeline is still being very smart about her head. She still gets upset when I have her sit up on her own, and gets very upset when she forgets to be cautious and rolls to her tummy. She will not roll back to her back now - she cries and waits for someone to help her. I know it will come with time. And we have lots of time.
I have had a few people tell me stories about family members who were diagnosed with craniosynostosis years ago. It's amazing how the surgery and treatment has progressed, even in the last 15 years. It's funny to me that with success story, there is also a little "quirk". Like an eye twitch, or not being able to look up (which is common), or still having an oddly shaped head. But they all kid about it...and I know that we will do the same.
The woman that has touched me the most so far though was a grandma that came up to me today and asked me how I knew something was wrong. I told her I just knew. It was like an instinct. Even though many people thought it wasn't a big deal, I knew there was a problem. She said her 6 month old grandson has a very small head and is also very fussy. She said the pediatrician thinks it's nothing, but her daughter and herself feel differently. I hope they will follow their gut and call the Craniofacial clinic. If it is nothing, great! They can find relief in knowing he will be okay and they did what they could to help him. But if it is something, the surgeons will probably be able to fix it.
And this is what I want to do now...Pay it forward. Take all of the support and generosity we have experienced and help other people. I can take my love to help others to a whole new level.
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