Dear William-

On August 17th, 2006 at 5:01pm, you came into this world. I had a perfectly normal term pregnancy with you just as I had with your brother and sister; no problems at all in fact I loved being pregnant! 

This pregnancy with you was considered high risk because I would be 35 when you were born. You were induced due to my pattern of big babies but you were born a healthy 7 lbs. 3 oz. There was a perfect knot in the umbilical cord but that didn’t seem to cause the doctor any concern. You began nursing right away and in fact nursed for about a year. You did start spitting up everything you ate which we just chalked up to reflux; no big deal right? Wrong.

At about 2 months of age, I noticed that you weren’t t able to hold your head up at all. I expressed my concerns to our doctor and he thought you were probably just slow to develop but recommended an MRI just to be sure. 

So at 4 months of age, you were sedated for an MRI! Dad and I were heartbroken that our tiny baby boy had to go through this but we knew we needed to see what was going on. At our follow up appointment with the neurologist, nothing was found and the doctor specifically said, “I don’t think this is progressive.” He recommended starting physical therapy which we did. After months of therapy, there was no improvement. 

At around 6 months of age we noticed some facial movements but literally thought it was constipation. In fact I remember sending Dad to Walmart late at night to get something to help you poop. Who would’ve guessed these facial movements were actually seizures?! We still didn’t have any answers at this point. 

When you were 9 months old, our family moved from Virginia to South Carolina. This move happened at a crucial point in your care. We needed to know what was going on. We saw a developmental pediatrician who did a complete work up on you and got established with a wonderful neurologist. 

The neurologist suspected it might be mitochondrial disease which we had never heard of. He referred us to a mitochondrial disease specialist in Atlanta who did a muscle biopsy on you when you were a year old. 

This is when you should’ve been walking and saying a few words and grabbing things which you were not doing. You weren’t even holding your head up! After 3 grueling months, we got the diagnosis of mitochondrial disease. I remember receiving the letter in the mail the exact day we left to go on our first trip to Disney. I remember crying on our drive. At least we knew what we were dealing with but it certainly didn’t make the pain any less. 

At 18 months, you had your second surgery; a Nissen Fundoplication where part of the stomach is wrapped around the esophagus to prevent food from coming back up. You also has a gastrostomy-tube (g-tube) placed. This surgery was done to help with your severe reflux and the g-tube was for supplemental feedings to help you gain weight. The g-tube was not going to be your only means of nutrition. Well, you decided otherwise; you completely stopped taking a bottle and eating solid foods. This was the beginning of being strictly tube fed. 

Over the next few years, you had a repeat Nissen surgery because the first one had pulled loose due to severe gagging. You also had hip surgery on both hips; hip surgery recovery is brutal! You had numerous hospital stays, many tests done and lots and lots of medication. You were always such a sweet patient. 

We did get to a point after all these surgeries that things leveled out and you were doing well for about 2 years. 

You were a true inspiration and had the best attitude despite what you were going through. You hardly cried and you made lots of happy sounds. Your brother and sister loved holding you and reading to you and pushing you in your wheelchair. Sometimes, they even argued over who got to push you. 

Your grandparents, aunts, uncles, cousins, and friends loved you so much. You had wonderful nurses caring for you and many doctors who had your best interest at heart.

In the fall of 2013, you were in and out of the hospital about 4 times due to respiratory issues, g-tube infections and urinary tract infections. In late February 2014, you took your last ride to the hospital in an ambulance. That was scary! That was by far the worst we had seen you and we were preparing to say good bye to you. That was awful. You  pulled through this though. Before we were discharged to come home, we met with the hospice coordinators to get you put on home hospice. We were tired of going to the hospital. It was a disruption to our family in so many ways. 

You were on home hospice for the last year of your life. We didn’t go to the hospital. We didn’t go to any doctor appointments. Hospice was a blessing to our family. You stayed fairly stable for that last year. The hospice team was nothing short of amazing.

In January of 2015, Dad started a new job in Georgia. The plan was to join him once your brother and sister finished the school year. We had good connections for doctors for you in Georgia and I had filled out all the paperwork to get you on Medicaid. We looked at houses that would accommodate you. You were going with us. 

It didn’t cross our minds that you weren’t. In mid-February, your nurses and I noticed that you were sleeping much more than normal. We weren’t really concerned though because you tended to sleep more in the cooler months. I called you my hibernating bear. You were literally sleeping 23 hours a day! You then started having some problems with your bodily functions. You weren’t peeing as you should; you were on a liquid diet so this shouldn’t have been a problem. You definitely weren’t pooping without the help of suppositories. 

At this point, the hospice doctor put you on Lasix which is a diuretic and would (hopefully) make you “pee like a race horse.”  Guess what? It didn’t work. You continued to not pee and started retaining fluids. We cut back on your formula intake to give your body a rest. It was pretty evident that your kidneys were shutting down and your feeds were causing more harm than good. We had to make a really hard decision.

On Friday, March 6, you had his last feeding. Like I said, feeding you was too hard on your little body. We knew this was the beginning of the end. Family and friends came to say their goodbyes over the weekend and offer us love and support. Our worst nightmare was coming true. 

On March 9 at 7:00am, you passed away peacefully surrounded by your family. 

William, you were and are a blessing and you taught us so much. Your short life of 8 years was a meaningful and fulfilling one. 

YOU WERE LOVED AND YOU LOVED WELL. 

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Love-

Mommy

It is all okay
No matter what you or anybody says, no matter what happens
No matter if you belong to that group or that club or have that job
Or stay married to that man or woman even
It is all okay

Consider the lilies in the field, they neither toil nor slumber and God takes care of them

And tomorrow will take care of itself, just take care of today

For all your life, each day will be starting over
Each day will be a new opportunity to be alive and to be happy and joyful
That is your contribution
That is what the world needs
That is what you will always need

Do your meditation
Go meet Thich Nhat Hanh  (pronounced tick not hon)
Do your exercise
Go find teachers and trainers
Ask questions
Don’t know the answers
Keep asking

Warning against getting your feelings hurt and feeling useless and depressed
That is why the meditation and prayer, and Bible and exercise is so important

You were gifted with incredible parents
Use that gift every day
Be aware of it
Not everybody had that gift
It is yours and cannot be taken away

And you can give from that deep reservoir

Sense of humor
The Tattooed lady Song
The lasagna and and garlic baguette
How to hammer a nail and grow a rose bush
How to be a moderate drinker
How to weigh the same thing all your life
Water skiing
And snow skiing
Cooking and entertaining

Tracking things
Having goals and projects and lists
Part 2
Your younger self could be in a war, or hurricane or flood,
Even then, these lessons of being present apply
Even when your brother dies at 20 in a car accident and your father said a prayer of thanksgiving
And your grandson doesn’t want to go on
And your sweetheart just criticizes and ultimately leaves and your brother teases
And you gain so much weight
Still haven’t learned Spanish
And your attic or basement or garage may be full
Just stand up and be and contribute your best loving self for the war and turn your other cheek to
your sweetheart and brother
They love you
They are where they are
You have infinite wisdom that life is a joy and we are forever learning
Tell your children and grandchildren and friends how proud you are of them and that you love
them. In law children too

And expect nothing in return, no credit, even being ignored is fine
Be a space for healing and wonder and nobody knows what hit them but they are all good or as
the grans say
All good bro
Have a meditation and writing practice
And follow the one day at a time rule
And keep it simple and easy
It is amazing to be a human being
And there are so many versions to observe, learn from and write about
Everybody is your teacher, especially the ones who are hard for you
So no shortage there

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Much love-