Raising children is a challenging experience. It is one that has low points, hard climbs, and breathtaking views before the path heads back down into a valley on the trail. Do you ever find yourself in a valley? Are you surrounded on all sides by mountains to climb? Have rocky boulders littered the steep path out of the valley so that you cannot imagine making in through one more day, much less a week, month, or lifetime? Life with Mason has brought me into valleys I never expected to visit. At the bottom of the valley I look up and see mountains. I want to describe two of those mountains today.
The Mountain of Fear
Fear that the limitations of his body are more complicated and far reaching than we expected. This is a mountain we have been climbing since his diagnosis before birth. Just when we think we’ve made it to the top we find there is another peak to climb. While we were told to expect a child who might walk part-time it soon became apparent that Mason’s nerve damage was more severe than expected. He will never walk. We made it over that peak but know the realities of it will strike at odd moments over the years.
Along the path up this mountain we have found boulders in our way. His paralysis affects bowel movements severely. We struggle daily to find a balance between too much intervention causing diarrhea and not enough causing total constipation. Without intervention Mason simply doesn’t poop. We use Miralax and occasional enemas for now but there are potential surgeries and full time enema routines in the future.
His abdominal and back muscles are compromised by nerve damage. His balance at 15 months old is still not there. He still cannot sit without a hand on the floor to balance, with brief moments of balance without using his hands. When Mason is serious about playing he lays down like the picture above so he can use both hands. He cannot sit in a chair and use both hands unless it has a seatbelt to keep him balanced. Will he ever be able to sit in a regular chair or even just on the floor and use both his hands to play? I don’t know, maybe, maybe not.
The Mountain of Exhaustion
There seems to be no end to the extra needs. Nothing is simple, nothing comes easily. For me it is an eternal round of keeping track and doing. Keeping track of medication doses, figuring out how much of certain medicines he needs based on what he is eating each day, not forgetting timed doses of other medicine. Every four hours stopping what we’re doing to cath him, a process that takes longer now that his bladder is paralyzed by Ditropan so we’re doing virtually all the work. Even at midnight it must be done so sleep is interrupted.
Physical therapies that need done as often as possible but need to be fun because he’s just a 1 year old and won’t do the work without enjoying it. Stretching muscles and tendons that are tight to hopefully maintain what flexibility he has, while watching carefully to not dislocate other things where he is over-flexible.
Continual skin checks to see if he’s bruised, scraped, bleeding, or cut because he can’t feel half his body. He bit his toe a few days ago until it bled because he can’t feel it. Just doing the normal baby thing of playing with his feet, but he got off the sock and before we knew it he was hurt. Playing outside in shorts because it is hot means crawling and dragging half his body over rocks, sticks, sidewalk, and more. Scrapes, bruises, and cuts result.Other boulders up this particular mountain include the landslide of medical appointments that crop up, necessitating scheduling, driving, and coordinating care between specialists who make one simple change and it affects what half the others take care of.
There are the sleepless nights induced by factors such as itchy eczema, pain, discomfort, or who knows what.
There is the constant lifting, carrying, and helping Mason get where he wants to go. He is the typical 15 month old who wants up on the couch, or up the stairs, at the table, up to the piano, or on the counter when I’m cooking but he can’t get on any of those himself. And once he’s there he needs you with him so he doesn’t fall off(remember that balance issue?). He can’t just slide off the couch or slip down from his seat at the table when he’s done either, though he will probably figure that out in a few years. Yes, years.
I try to be open about these valleys because they are real. They are temporary though, just a part of the path. This path also holds breathtaking views, mile high blessings gained from the climb. We have mountain top experiences of joy that fortify us for the next valley. Our whole family is stronger simply because the path has not been flat and easy. Along the climb we have discovered blessings, beautiful, unexpected blessings growing out of the rocks. Truly, God works together all things for the good of His children. His tender mercies and strength carry us out of the valley, over the boulders, and to the mountain top when we cannot climb any further. I know this. I have seen it in my life. When I come to the end of my strength, to the end of myself, He is there to help me up the mountain. He is there to point out the blessings along the way, like flowers growing from the rocks.
Are you in a valley or struggling up a mountain right now? Look around you for the blessings, the flowers growing from the rocks. Then reach for the Savior and let him help you to the next mountain top. He’s right there waiting for you to ask.