Delaney Update: 5/8

Mother's Day tears, respite, recovery, and feeling like a human being again.

When we woke up today things started out a bit like the movie Ground Hog's Day. We've been attacking the daily grind of this war much the same way every day. We didn't realize that we could decide to make changes for our betterment but for whatever reason we just haven't. Typically we just allow adrenaline to carry us. We know that this isn't right or healthy, we just didn't know how to break the routine. We know that we've been tackling the tasks at hand with Delaney's best interest at heart and in that we have been unwavering. Whatever semblance of a routine we thought we had just could never have worked for very long, and today I think we hit that wall - hard.

We both just broke down and cried at the absolute unfairness of the whole thing. Delaney didn't do anything to deserve this. I think we know that it's as they say "life happens". True, but this isn't a life, and jot the life we envisioned. We got angry, we yelled, we sobbed, and we held each other tight. Sure we know we have to live in the moment some days it's harder than others.

We spent a lot of time today sorting out our feelings about what has happened, where we are at, and where we are headed. It was very emotional and since I'm a counselor I'm certainly not uncomfortable with emotion, but when you really let go and let yourself "feel" it's a little scary but always feels better afterwards, and today was no exception. What I find astonishing is that as strong as we are in this relationship, I didn't think it would be possible to love each other more. I think that we've determined that this love "...goes to eleven" - a la the movie "This is Spinal Tap".

Finding peace within the nightmare. Our first reminder came today when Sean and Jill visited for a time. Sean was all charged up with Ki energy, his well-timed sense of humor, and a little dose of his confidence channeled through his alter-ego "Spike" (which we all can use a dose of from time to time) was just plain wonderful. I love my brother very much and he was in his element today. I smile right now just thinking about it.

Our second reminder arrived when Cece came to visit with a meal and a few grocery items. Her visit was brief but set in motion some things that were rather unexpected. She told me very simply that we needed to get out of the house, more than once. It was a gentle nudge that was needed and appreciated. Even as I listened to her advice a part of me was thinking "How are we going to do this?" Sometimes the solution presents itself, and you have to know when to accept it into your life.

My parents came to visit, they called to announce they were in the driveway and that we should meet them outside. We suspected something, a gift perhaps? (Well, duh...winning!) We approached my Dad's Jeep and as he opened the back hatch, we see a box...it's a brand new HDTV! It felt like Christmas...but the bonus gift seemed to have the greatest impact.

After we prepped Delaney with her next feeding and cleared her airway, my parents stayed and watched over her for about 45 minutes.

With that, Lindsay & I took our first bike ride of the season. We finally felt like human beings again. The fresh air and sunshine were amazing. We made it through all of the angst of the morning we reached the afternoon feeling more like a normal family again.

I would be remiss if I didn't leave you with some Delaney observations. More and more as she grows, I'm starting to truly notice more of the traits that Lindsay and I gave to her. Not only physically, but in personality.

When I look at her eyes and forehead I see myself. Her cheeks, chin, and nose are all Lindsay. Her ears are mine for sure. Long limbs, she got from the two of us. There's something so special about seeing our traits on Delaney. She is our legacy. We hope that all of our best traits we've given her will serve her well.

She has our sensitivity, our affection, and our passion. I know that's what keeps her going. She has tenacity, and anger even. It's what gives her that fight.

She showed us something this evening that I'm not sure we've noticed before. It was her eyes, they were turning red and at first we thought they were just irritated in some way that you would if you had an allergic reaction. Her eyes were watery too. What I finally put together was that she was crying.

It crushed me to have taken so long to recognize it but at the same time I was reassured more than ever that she really is in there. How scary that must be for her to be trying to reach out, to tell is she's upset or lonely. Or that maybe she just needs to be held. Well, I couldn't resist picking her up at that point. I said all the things any parent would say to soothe a child. I don't know of she understands the words but I know she understands the tone. Within a minute or two, of me holding her those eyes went back to normal, she calmed down and slept a while. It was so sweet. So sweet.

I'm so glad that we have been able to make good decisions for Delaney. We are going to make it right for her, we're giving her all the time she needs. With a little help from our friends and family, we are going to keep ourselves sane so we can continue to make those good decisions for her.

Tomorrow we learn more about what our next steps our. We should have the referral for the Pulmonary specialist, and perhaps some more information about HBOT Treatments.

We really felt like a family today, and after we got through that initial worry and pain we simply enjoyed each other's company. We ended Mother's Day the way it ought to be.

Love,
B & L & d

P.S. I did get Lindsay a beautiful (smokin' hot) dress for Mother's Day - it was no day