The desperate search for joy in pain

Some days are hard … some moments are even harder.

Recently there have been moments that have changed me, moments that have brought me to my knees in sadness and even more moments that leave me searching daily for the joy amongst the pain.

I have spent too many month now heading into years comparing myself and my grief with other MLD moms. It has not served me well because they are all individual amazing women but I seem to forget we are all on our own journey. I keep my grief in my pocket sometimes because I have a lot of it but it’s not easy to hide some days. I also hear that my child is alive so I should be grateful… well no one has to tell me that. We are all blessed in this family and know it. Being blessed doesn’t automatically take away the pain that comes on a daily basis. I have to remember that this is OUR journey and no one else’s.

I really believed after so many years it would not be so hard … I would have more acceptance, but unfortunately I am brutally honest when I say that’s not how it is panning out. Acceptance is harder than I thought.

Ella is like a 7 year old in a 10 year old body… friendships are hard … more than you can imagine. She doesn’t have that go to that you always hoped for for your daughter … she is immature and just wants to play but it’s mostly not the kind of play kids her age want to do. I feel like she is just too eager and that is hard for girls her age to understand. She is the most loving girl but nothing comes easy for her and this “normalcy” some days can almost be harder than watching her go through GT. There I could protect her from disappointments, protect her from everything outside of our little box. There was no thoughts of sports or friends or what life would be like “after” Now here we are …This is life … a life we fought so hard for yet it will never be what we dreamed of because the disease is still there and it is still slowly changing her. It’s heartbreaking.

I ask God every day to help us and I feel at a loss many days. My faith is shaken to the core but I don’t want to give up on it. The girl I dreamed about (literally), the girl I dreamed of and the baby girl we were so excited for … why must her life be so challenging and why is there not much we can do about it? These are the questions and I ask often.

Eli is a whole other story. We see changes weekly now in him… his legs being the biggest one. I can hardly type this thinking of the phone conversation that I just had with his PT. She called to ask if we had a trip planned soon or visits to CHOP because she is concerned with his one leg/knee just going. He walks at an angle that seems to be impossible to most of us yet somehow he continues. How can we save his legs?! We can’t …. his hips are coming in more which makes his legs worse. Spasticity is becoming much worse and yet here I am sounding so selfish that I just pray that he can keep walking. I wanted to take him to Great Wolf Lodge before he can’t anymore and I am so angry at myself that we have not done it yet. I just keep thinking he will keep going but it’s not going to happen and I’m devastated. I really don’t need to hear “Becky he will be here even if he can’t walk”… I get it … but this is OUR son losing these abilities and you might feel the same. It’s not easy watching your child lose abilities right in front of your eyes.

The house will get railings soon both inside and out …I guess this is just the beginning of the changes that will need to be made. One step at a time to help him feel comfortable in his own home.

All I can really ask for is prayers. I have to believe that God knows the best things for them… from friendships, to their medical issues .So at this point we can only rely on God to send us in the right direction, send us the right people and guide us to make the best decision possible for them.

We will continue to find the joy in this pain because we always have. Some days are just harder than others. Some days it’s right in front of you and others you have to get out your searchlight. For now we will make sure we always have batteries for that searchlight because we don’t ever want to forget how lucky we really are… pain or no pain.



~ by Rebecca on January 16, 2019.

7 Responses to “The desperate search for joy in pain”

  1. Hugs and prayers for you! Always prayers for your children and family.

  2. Becky I hear you. Our journey is different but it’s filled with many of the same feelings and the same moments you describe. We can’t turn back the clock and wish MLD away but how we would love too! For all I’ve experienced and seen, I would love for there to be no disease called Metachromatic Leukodystrophy. Hugs my friend.

  3. Please know you are doing the best with your journey! Someday we will know why but we need to live the dash! And know I’m here for an ear to listen and give you hope for tomorrow!

  4. I will keep praying for your family. I feel so sad for all of you but hopeful that a cure will be found in time for your children and all the others that are afflicted by MLD. God bless you and yours.

  5. Thanks for sharing your difficulties. Our son has Aicardi-Goutieres syndrome (another leukodystrophy) and we are lucky too. He’s mild in comparison to so many others. It doesn’t stop the pain and the what if’s though. It doesn’t change the fact that you hoped for a different, easier life for your child. My heart breaks watching him try so hard to do the most basic of things but swells with pride at how hard her works and refuses to give up.
    If more of us shared our true feelings maybe we wouldn’t feel so alone or like we are selfish for feeling that way. Know you are not alone and that you are allowed to feel this way 💙

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