Christmas Spirit

"All we have to decide is what to do with the time that is given to us..." -Gandalf

We often throw around phrases like these , such as "Life is too short", "No time like the present", "Carpe Diem". I think about Delaney and how she has only been with us for a mere nine months, but in the time she has sent a powerful message to people far and wide. The message has been to remind us of what is most important in life; faith, perseverance and understanding, pragmatism and love.

So often over the past nine months we wonder how we are able to keep "doing this". The truth is when faced with all of our challenges, we just do the next thing and we are not really able to think too far ahead. Lindsay and I have had so many difficult days, nights, and weeks over the last nine months, that sometimes it's difficult to comprehend. The way moments of need show up each hour and each day are small but cumulative. When her airway needs to be suctioned every 5-15 minutes, we just take it one action at a time. Sometimes we don't realize how draining it is until a few hours go by and one or both of us just snap(s). We get angry, frustrated, short tempered, and sometimes we get hyper focused on details that in the scheme of things, when we have time and space to reflect, just don't matter. Sometimes there are funny little idiosyncrasies that bother us that under normal circumstances might not have even been noticed. However at the same time we often turn to each other upon observation of the perturbation of others and think, "People need to 'get-a-clue'. On the surface sometimes we feel we have lost our faith, it happens and we are human. However, at our core I believe that we have faith that the current state of things will not go on forever; the way it has been - will change. One way or the other, God doesn't want us to live like this interminably.

However, until things do change significantly we persevere. Delaney shows us daily what it means to keep on keepin' on. She scraps and fights, and clings to life. We may never see significant changes in development, but she may surprise us. Until that time we accept what she gives us. We support her and encourage her as much as possible along the way. Our experience with Delaney can be simply described in that there are three or four distinct states of being. Sleepy, Calm, upset in pain, and agitated emotionally. Sadly, it seems that she is sleeping 60-70% of the time and about 15-20% of the time she is upset or in pain, the remainder we have a calm quiet baby, who often just stares off into space. Not really knowing what she focuses on we do try to engage her. We place picture books in her field of view, we make eye contact at close range. We don't get a lot of feedback from her but there are hints and glimmers of response.

The periods that take most of our energy and challenge us are the times when she is in pain, and times when she is agitated. During these times we manage with a combination of sedatives and pain medications. Each day we hope to use the minimal amount of medications, but more often than not we are left with no other choice. We take into account all the meds that she has and it's so sad to look at our counter top and refrigerator to see all of the bottles and syrunges, no child should need this kind of intervention; it's just not right but it's what we have to do. Sometimes we give her everything we can and nothing seems to help. Those are the hardest times, the powerlessness is overwhelming.

What saddens us deeply is that for the most part we don't get any of the typical rewards that most parents experience with their children. We don't get smiles, laughs, or many normal responses from Delaney. There are times where she will coo and respond vocally, we try so hard to build communication with her. To this point we have not been able to establish any verbal cues that relate to anything more than very simplistic parroting. Very little in the way of
non-distress related vocalizations. Despite that we still talk to her and smile at her, we laugh around her and try to stimulate as much as we can. It's just difficult to discern what may be getting through to her or not. It's frankly very challenging to engage her with consistency when we don't get the reinforcement or feedback. One piece to that puzzle has been our nurse Pat, who has been nothing short of a godsend. Not only does she handle all of her medical needs with tenderness and diligence, but she takes care of Delaney as if she were her own grandchild. She sings to her and reads to her, gives her all the attention she needs and when Delaney shows the slightest sign of engagement Pat responds with delight and encouragement. She cheers her on with every glimmer of eye contact and response to auditory stimulation.

To illustrate what we experience with her physically, Delaney has very little control over her limbs and is unable to sit on her own without assistance. This is difficult to deal with because it requires a lot of endurance to hold her for long periods of time, since she can't do any of the "work" on her own. She can move her arms in limited rhythmic motions, but cannot put much if any weight bearing pressure on them. She moves her legs in very small motions and doesn't make much effort to pull them up or lift them. Most of the large movements occur when she is upset but do not last very long. It's a combination of strength and focus. We know that her brain injury is the root cause of most if not all of her mobility concerns, but it's not clear as to what she may be able to learn (re-learn) over time. We have had physical therapy and occupational therapy in the past, but we discontinued those interventions when her prognosis was downgraded a few months ago. We may at some point reconsider, but it's stressful for us, and it's not clear how much Delaney was really improving from the intervention. We really didn't notice dramatic shifts in her motor function during the weeks and months she was receiving this intervention.

Despite her limitations we do want her to have as much quality of life as possible. So upon the suggestion of Pat, I contacted our Engineering Tech Department at Seaholm to see about fashioning a stationary chair that would provide enough supports for her to sit upright without our assistance. There are many types chairs out there in the medical equipment industry but the costs are astronomical for what in some cases appears to be a very simply design. I think much of the costs are inflated due to the unnatural influence of insurance. No one would spend thousands of dollars on equipment that probably costs a fraction of that to produce, but if insurance covers any portion of that people may feel they are getting a "deal". The materials and manufacturing of such devices cannot be that much more than a high-end car seat or a highchair, yet I've seen chairs for our purposes run as high as 2,500 dollars. Really, this is deplorable. That being said our Engineering Tech Department at Seaholm High School has taken up the challenge of recreating a similar chair for Delaney. We are so excited to see what they are able to accomplish.

All in all, I don't think we would be able to make our way through this particular period of our journey without being realistic and making a concerted effort to begin each day with love in our hearts. It begins with Lindsay and I and the love we have for each other. We take time to make this obvious. Everyday, we tell each other how much we love one another and how lucky we are to be together. We value each other. This is something that has not wavered in the least since all of the challenges with Delaney began. We have bonded even further through these tough times. It is largely due to not only the love that we have between us, but around us that has been key. It's what brought Delaney into this world, and it's what keeps her going.

I truly do not know what to say to thank all of the supporters who have provided meals, services, words of support, prayers, donations; ears, hugs, and shoulders. I often think that I would like to be able to thank everyone individually but it becomes nearly impossible to keep track of each connection we have made. At last check, we have had over 17,000 views to our blog, and many have sent emails, donations, and added Delaney and our family to prayer chains. We have had blog views from all over the United States and even across the globe; from the United Kingdom to Romania to Australia to Japan, and the even Ukraine. I hope that this post and many others will continue to reach our supporters and ensure that we love and appreciate all of the support. It's an astonishing, stunning, mind blowing experience to think that this little girl who wants nothing more than to be loved has been able to touch the world.

So when I reflect on Gandalf's words again, I can only say that within Delaney's spirit she has decided that what she 'will do with the time she has been given' is to send the message of love to all those around her. What we have done with the time we have been given with Delaney is to honor that spirit. I hope that during this time of Christmas and what ever holy days you may be celebrating that you keep the spirit of love in your hearts and minds. Perhaps it could be expressed in a simple courtesy as you drive peacefully from place to place, or as you hold the door for someone as you busily finish your Christmas shopping. Or perhaps you take a moment to pause and reflect before you pass judgement on others. Use the time that you have been given to help make things easier for one another. We get so caught up in our narcissism, we so quickly complain about mundane things. Often our facebook status updates, blogs, tweets, and text messages have transformed our digital world into a collective complaint box. I hope that with the time we have been given that we become more thoughtful about the messages create in our minds, that we share with others, and that what we intend for others to be kinder, gentler, and to begin first with love in our hearts.

Remember that life is too short, there really is no time like the present, and we all should believe in Carpe Diem...please do so with kindness and think the best of others. What we have the most control over is how we treat others and how we treat ourselves.

Merry Christmas to you all, and have a Happy New Year!

God Bless,

B & L & d