Elysecloseup

 

Its not often that I’m without words, but recently I have felt quiet and contemplative. The two words that have been on my lips most, are a diagnosis I struggle to pronounce, let alone understand: Juvenile Dermatomyositis (JDM).

These last few days since we’ve been home have felt like I’m underwater holding my breath. The same house, the same rituals and to do’s, the same family, but a very different reality.

I’m preparing myself to emerge back into the world with Elyse. It almost feels like when we introduced her to the world as a newborn, watching her every move with careful optimism, wanting to keep her within arms reach.

When you see her it might seem like you’re meeting any 18 month old toddler, her belly pooched out as she marches with a proud waddle. She makes one word declarations, wearing the world on her face with exaggerated expressions. When you see her, she’ll probably say “Hi” three times with her wide smile. You’ll notice her face is fuller and less blotchy,  her big wide eyes reflecting her enthusiasm, the shadows beneath them hint at tiredness . She might make wide circles around you, gaining momentum and confidence with each step as she clucks and coos with glee.

In these moments we get to celebrate life with her as it should be, an energetic baby enjoying and exploring the world around her.

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At home we also deal with another, new reality.

Each morning and evening we give her Prednisone, a steroid with undesirable side effects such as insomnia, weight gain, aggression, blood sugar changes, osteoporosis, and stomach upset. To counteract unwanted effects we give her Calcium, Vitamin D and Zantac. Prednisone suppresses her immune system so we have to protect her from being exposed to unwanted cooties- meaning avoiding crowded enclosed places or large groups of children. 

Because the sun can worsen the effects of JDM we need to avoid the sun during peak hours, and be vigilant about protection. E is embracing the hat as her new accessory.

Elysehat

Once a week, we give her a shot that is a chemotherapy drug called Methotrexate. We have to wear gloves to avoid contact with the very liquid that we inject into our baby’s skin. This is designed to work with the cortisteroid to quiet the overactive immune response that is attacking her skin and muscles .

The needle is tiny and the dose is very small.  Though difficult, we agree these are the steps we need to take right now. After 30 minutes of practicing on fake plastic skin, Nate played the brave daddy and gave her the first injection (I played the pregnant for 9 months card).

nateandehospital

Once a month we will go to the hospital for Elyse to receive a 6 hour IV drip of Intravenous Immune Globin (IVIG) which is a lot like a blood transfusion, but IVIG is made up of the plasma of up to 15,000 blood donors. Our nurse calls it liquid gold. I keep telling Elyse that it makes her sparkle.

E gets to play with a Physical Therapist twice a week until she rebuilds muscle strength and mobility, She thinks its pretty cool to have a personal trainer that gives her undivided attention, and beach balls.

E will have good moments, and moments when she is uncomfortable and fatigued. We hope the good days will be more and more. 

We’re still taking time to absorb our new reality; to figure out how our lives will be the same and very different.

Right now the words Juvenile Dermatomyositis taste bitter and unnatural. The doctor confirmed she’s the youngest child he’s seen with JDM, as the average age of onset is 7 years old.  I know that God lets us taste the hard things in life to help us appreciate the good. As we learn about suffering, we learn more about love. There is no turning back from this road that we’re on, and so we will trust God through this journey. We will celebrate God’s goodness; we will taste His fullness as you feed us; His faithfulness as you pray for us and walk beside us;  we will grow to understand how wide and how deep, how long and how high His love is, as we love our daughter, knowing somehow He loves her even more.

John9:1to3

 

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19 comments on “A New Reality”

  1. thank you for your beautiful and hard painful journey. I do not mind these treatments at my 60 age and it breaks my heart to see what you are going thru. But we all know God has a plan through your pain.

  2. You are all strong and brave and will be in our daily prayers as you manage the new normal. Hugs to you and your beautiful family.

  3. These changes in your reality is so very hard. You are a courageous and loving. You are a mother who loves her child with the strength to move mountains through the grace of our Lord Jesus Christ. Our prayers are with your family. We love you guys. Courageous also is Nathan giving her the first home injection. May God completely heal this beautiful little Elyse.

  4. We prayed for in the St. Paul family last Sunday and Su and I pray every time Elyse comes to mind – as you can imagine – often. I would like to share your Blog with the non-bloggers in our church family. It is an answer to the prayer we prayed. Do I have your permission?

  5. Beautifully expressed, which is so hard. From mother to mother in similar “unplanned” shoes, God always knows what He’s doing, and it’s always way better than what we plan! My prayers are with your family & especially with your precious baby girl. You keep God in the center and you will always come up on top. Xoxo

  6. We have Elyse on our continued prayer list at Bethel in Buena Park. We pray that God will shower all of you with His blessings and His peace!

  7. My words cant even express. As I sit here in a hotel room missing my boys yet grateful for work tears stream down my cheeks as my heart goes out to you as a Mom. I cant imagine how you and Nathan must feel yet I see and feel Gods love and hope. I pray for you and the family. May God heal and keep all in comfort if comfort is possible. sounds like you have the attitude and truly Lindsay I wish I could wrap my arms around you at this very moment and let you know you are loved and cared for xxoo

  8. As you begin this journey and are finding the highs and lows of the landscape, may it comfort you to know the love of many surround you and keep you in prayer. My daily prayers will continue to include sweet Elyse and her family.

  9. You continue to be in my thoughts and prayers! So much we don’t understand, yet your words express your heartfelt love,, emotion and new way of being that enables me to sense your grief.
    I am forever awed at God’s devine plan in our lives. Sometimes we never know or understand, maybe we get glimpse.
    But so very grateful ya’ll took the call to California. You are close to the children’s Hospital, close to your family, and have made great friends at your new church home. Gods plan is so much greater than ours!
    However I am so very sorry that precious little E is having to suffer! I am thankful your there close to the medical help you need for her.

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