Emily and Laura

Scenes like this remind me how blessed Laura is to have so many people spend time with her. To our other daughter Emily:  Thanks for being a wonderful sister and daughter; thanks for everything you do.   

Call it: Bitter Sweet Blessings  

A month ago Laura's cousin set up a gofundme page https://www.gofundme.com/lauramld
for Laura and we are absolutely amazed at the care, compassion and support people are showering us with.  Friends, family, and community have all been sharing in our journey. Thank you.  Some of this support is from people we've never met proving that the depth of the communities compassion is incredibly real.

So in spite of this journey we wish we were never a part of, we push on, hopeful that today and tomorrow will be better than the last, and trying to always stay focused on enjoying each moment.

It's been so long ! And there's no way I can cover the past 6 months. So here's a brief update of what's been going on.

First and most important.  Laura is in good spirits and has a wonderful perspective on life. Most of the time. 


However, every few days she will repeat "i hate this disease"  What's a parent to do?  We acknowledge it and offer reassurance that we are dedicated to taking care of her and doing whatever we can to help.  And that's what we do.

In the past month, there has been an unfortunate, and expected, progression in her disease.  So added to the senses and functions she's already lost, add can no longer drink (swallow) fluids and is legally blind.

So we push on.  We've modified her bedroom, again, so we can respond to her health needs.  This includes a sleeper chair so we can spend the night next to her when she's sick.  And IV bags for Gtube feeding and hydration.

Meanwhile, we continue to engage Laura in social functions and have weekly trips to Kennedy Krieger where she can actually walk on her own using a mechanically assistance device we all call "The GEO".

And now that it's warmer outside, we make it a point to have her on the back deck with us to enjoy sun and nature.

Many have heard about the 6 degrees of separation theory.  Well, Laura is 2 degrees removed from Pope Francis!! 

Let me explain: A few weeks ago, Laura was a guest of Maryland's Governor Hogan during the season opener between the Washington Redskins vs. Miami Dolphins.  This event was organized between the Governor's office, the Washington Redskins, and the Cool Kids campaign to recognize and acknowledge the effect that cancer has on many of us.  Governor Hogan is currently battling non-Hodgkin's lymphoma.  The connection is that Laura underwent a bone marrow transplant and has experienced many of the same treatments, baldness, joys, sorrows, and challenges that other kids have gone through during cancer treatment.

Here's why it's 2 degrees:  Yesterday the governor had the honor of meeting Pope Francis!  Voila.  There you have it !  Don't tell me life doesn't get exciting!

Prayers for personal strength, health and happiness are sent Governor Hogan's way during his ongoing treatment and recovery.

I know! It's been months since our last update.  So instead of replaying everything that's been going on, I'll just give you a snapshot of how we  are making the most of every day.

Last week I was spending some time with Laura and engaging her in

some great conversation.  I wanted to find out what Laura wanted to talk
about so I asked her the question: If heaven were a planet, which would it be ?  Answer: Jupiter.  And this led to other associations:

beach ......................... anywhere in CA
dog ............................ golden retriever
sister .......................... Emily
mother ....................... Mom (Darlene)
school ........................Towson University
favorite breakfast ...... chocolate chip pancakes
favorite dinner .......... macaroni and cheese

drug .......................... marijuana, and last

flower ........................peony

                   

I can't even imagine how boring it is to sit in a wheelchair all day long, all the while unable to verbally articulate what you may want, as in: hungry, tired, bored, can you take me here or there, I'm cold - can I have a blanket, and so on...  I think Darlene and I are pretty good at being able to read Laura's expressions, decipher her quite whispers, and read her lips.  We match these observations up with the time of day to get a pretty good idea of what she needs, wants, or would enjoy.

Thankfully, Laura loves breakfast time and always appreciates the chocolate chip pancakes.  Usually after the 1 hour required to feed her I stand her for 20 minutes to alleviate the pressure on her backside.

Past weekends we've gone out to movies or lunches; this past weekend we mixed in small events like reading her college textbook on "Educational Psychology", reading to her the latest Jody Picoult book, sitting together and looking out the back windows at the birds. Since the temperatures were in the low 50's on Sunday, we all went to church together and picked up lunch at Panera afterwards.

At a couple points, she was excessively uncomfortable so we would take an afternoon nap.  Another time, we took advantage of a 20 minute bike ride (image top left) on her mobile programmable pedal machine that can be rolled up to her chair.

Allow us a moment to pat ourselves on the back for a job well done. 8 months ago we started the process of planning a complete re-build of a bathroom to meet Laura's needs, including design, demolition (previously shared on this blog), and contractors.

Most challenging: working with insurance to acquire a functional shower chair for Laura.  This last component actually took the longest - the full 8 months from requisition to approval to receipt. 

Persistence, sprinkled with daily doses of patience, were absolute necessities so all the pieces of this puzzle fall into place. And looking into the inner workings: We received quotes ranging upwards to 35K  and we are happy to say our final price tag was 11K with all the bells and whistles.

Alas, we have a fully functional, totally waterproof, roll-in bathroom, shower with no lip, overhead lights, fan, heater, new electric and plenty of workspace.