• sharimeeks

Navigating with a Lamp

"Your word is a lamp for my feet and a light on my path"- Psalm 119:105

When I brought my daughter home, I had no idea what life was going to look like. As new parents, do we ever? Anyone who has kids knows that every day can be a roller coaster. There are so many ups and downs and we just never know what to expect. For the most part, it is small things that put together our "everyday lives"; temper tantrums, school, visiting with friends, putting food on the table, the list goes on. This life is predictable in many ways.

But it is so very interesting how the roller coaster seems to take you by surprise when your child is diagnosed with a terminal illness. Every day there are abrupt turns, loop-de-loos, and sometimes (many times!) I get the feeling of my stomach is in my throat and an elephant is sitting on my chest. As a mother of a child diagnosed with a terminal condition, I would have never imagined enduring such an emotional up-and-down.

Tessa has her own baseline, different from the average 18 month-old (her own heart rate, respiratory rate, heart beat, oxygen saturation, etc) and sometimes I think it would be best I don't know these things. Other times, it is because I know these things that Tessa has been treated for an infection (and I can recite (with accuracy) when Tessa has been sick with what infection).

Max Lucado says in his book, Traveling Light, "God promises a lamp unto thy feet, not a crystal ball into the future". He gives us what we need day-by-day to make the decisions required as mothers. I know I have been looking for a crystal ball, something that is going to tell me Tessa's future-so I can lay out a plan and prepare myself for another steep drop in the roller coaster. Instead I seemingly get red flags and false alarms. But I know He is working out His plan day-by-day and her future, our future is only to be known by Him.

With this roller coaster comes other added things that us mothers just get used to. Our diaper bags carry emergency medical supplies, the backs of our cars turn into Lincare vehicles with 10 tanks of oxygen and adaptive equipment, we always carry a minimum of two bags everywhere we go. Its funny, I seem to have an oxygen tank key in every vehicle and coat pocket!

The physical weight of packing these things doesn't even phase me. Its the emotional toll of explaining Tessa's condition to curious onlookers at the store; its the looks of pity on me as I push on. What's worse is the emotional weight I carry from a doctor's diagnosis which deems Tessa "incompatible with life". I know I do not carry this weight alone. It is carried by every mother who leaves the hospital with a child on Hospice or Home Health.

Despite the emotional toll each day brings, there is hope. Our children are gifts, not burdens. Our God knows what we must bear when he blesses us with our fragile (but oh so very tough) babies. He gives us the ultimate strength to endure. Children "incompatible with life" are strategically placed in this world to advance His kingdom. The best part is, He chose us! We were chosen, by God specifically, to be the mothers of these children with such divine appointments! And every piece of our lineage had a part in bringing this child to earth.

Lean on our Father, in fact in Matthew 11 verses 28-30,

He says "Come to me, all of you who are weary and burdened, and I will give you rest. All of you, take up My yoke and learn from Me, because I am gentle and humble in heart, and you will find rest for yourselves. For my yoke is easy and My burden is light."

Our Father is a good, good Father. Where there is seemingly no hope here, there is hope showering from above.

Let me leave you with one last thought.

As I was driving to work one day, I was listening to Pilgrim Radio. They were playing Wasteland by Needtobreathe. They summed it up just right in these few verses:

In this wasteland where I'm livin'

There is a crack in the door filled with light

And it's all that I need to get by

In this wasteland where I'm livin'

There is a crack in the door filled with light

And it's all that I need to shine

Oh if God is on my side

Oh if God is on my side

Yeah if God is on my side

Then who can be against me