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Author Archives: Betsy Walker

Love

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Mark and I were married on May, 19th, 2007. I made a commitment to him, and him to me. Our commitment was to cherish, love and support each other through bad times and good. We meant it. 

I genuinely feel that Mark and I made a deeper, far more important commitment to each other and our marriage in December of 2011.

We had received the shocking news that our child, who we created together, would live with challenges we might never understand. We heard news that we may out live our son.

This news is shocking, horrifying and deeply personal, and everyone reacts differently. Mark was far more focused on the now, were I was terrified for the future. Mark didn’t cry, he just got quiet. I cried, screamed, and talked my way through it all.

We know that disabilities can destroy marriages if you let them and I was terrified that Muscular Dystrophy would not only steal my child but my marriage. We sat down, crying and silent, and made a promise to be kind to each other during our grief. We promised to stay connected as two humans who are in love with each other. We scheduled dates. We scheduled sex. We scheduled hugs and kisses. These sounds like crazy things to schedule but when you are dealing with grief you don’t think about someone else’s pleasure or comfort. We knew that by keeping these things alive and well in our marriage we would be able to stay connected. It worked. It worked in a way that I never expected. I am more committed to Mark now, through our pain, than ever before.

We still handle things very differently. I still lean on him with a heavy heart. I still rely on him to lighten my load. I still rely on Mark to make my heart skip a beat.

I love him for the man he is. I love him for the father he has become. I love him for being him.

 

Squishy Stranger

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Mothering a child introduces a unique kind of love. The kind of love that rocks you to your core.

It’s true.

We meet this wrinkly, squishy stranger and we know things are different now. ‘Mother’ is a special title. We know when our babies breathe just the slightest bit differently, even from four rooms away. I realized I was doing fine as a mother the day I discovered one of my long brown hairs was the cause of Liam’s infant cry. It had wrapped itself around his toe. Who would check for something like that? You know who, a mother.

The joy that comes with motherhood is indescribable. Seriously, I’m not even going to try. You know what I’m talking about, because it’s in our bones.

The pain that comes with motherhood is something entirely different. The kind that makes you forget to breathe.

As a culture, we are taught to believe that we can work hard and fix problems. What if the problem is something that you can never, ever change? Something that rips away all your hard work, and all your visions of what the future should look like?

Early after Liam’s diagnosis there were moments of falling to my knees, punching the ground, while screaming but making no noise. Within minutes, I wiped my tears, and greeted a sweet, bright eyed, very lively little boy asking for apple juice. He was the reason I was falling apart, and he was the reason to get back up again.

He was right in front of me. Right there. Alive and happy. I remember saying that I felt like I was grieving his death. The future that I had imagined for him was crashing down. I was blind to what Liam’s life was going to be, I just knew what I thought happiness should look like. My sweet husband reminded me that everyone experiences joy differently, and Liam would have joy too, it might just look a little differently than mine.

My sweet friend Elizabeth sent me the essay Welcome to Holland written in 1987 by Emily Perl Kingsley. Kingsley wrote of the shift in perspective when your expectations of parenthood are met with the reality of parenting a child with special needs. It’s not what you expect, but it is still beautiful, full of adventure, and a bit foreign.

When I first read the poem I thought, I have zero interest in Holland. I signed up for Italy. Italy is what I dreamed about! My trip to Italy was going to give me hiking through Bachelor Woods. My Italy would give me the chance to  teach my son how to ice skate. My Italy was going to be letting him run loose with buddies and not having to worry if he is getting too tired, and over working his muscles. My Italy was imagining Liam driving. Liam living independently. Liam having the chance to show off his sweet white guy dance moves at a bar in his early 20’s.

I’m here to report that Holland has dark, stormy days. Holland is also spectacular.

Liam may not be able to skate, walk more than 100 yards at a time or run a 5K with me, but that’s ok.

Liam keeps showing me that even though I can’t “fix” his tired legs, we find a way to make it work.

 

Girlfriends

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My sweet girlfriends have saved me, time and time again. This blog entry could easily be a novel, but there are a few times that I must share.

A group of mothers can be a pretty mighty force. First of all, we are women (which makes us pretty awe inspiring). It is remarkable that the minute that someone is hurting, we lift each other with same skills we have learned from  soothing our tiny babies. My friends did this for me.

Standing in Julie’s kitchen, a place where our group has discussed the finer things. The stupid things we did before motherhood, or what obnoxious thing our toddler had done that day. I looked at the faces of these beautiful ladies who loved Liam like they loved their own children. They felt my fear, my pain and my desperation.

I hugged my friend Katy, who also was Liam (and now Lydia’s trusted teacher). I didn’t want to let go and see the pain around me. I looked into the swollen, teary eyes of my friends and wished that this didn’t touch our lives. That we could still be unaware of what Muscular Dystophy is, ignorance is bliss. They stood not knowing what to say, or do.They listening as I spoke, in what can only be described as scattered emotion. One minute feeling desperate and needing them to know how bad this disease can get, the next saying “I’m fine with a wheelchair, I just don’t want this to kill him”.

When I returned home that night I looked in on my sleeping babies and saw that Liam was sleeping well with his tiny butt sticking up into the air and drool running down his cheek. He would wake up to a new day. He didn’t know what was happening inside his body. He was happy, and I needed to be too. Happy along side my boy.

Taking a risk

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“Start a blog!” they say.

The voices of my most trusted friends keep echoing in my mind. “Tell your story, Betsy” they repeated.

Here I am, with our story. My words, my thoughts, but our story. I am taking a real risk by putting it all out there. The risk of showing my soft underbelly. The risk of exposing the pain involved with raising a child with a degenerative, fatal disease.

From what I can tell, the risk is worth it. Sharing our heart ache, our triumphs, our lives with those interested is definitely therapeutic. Day 1 of this “new normal” after Liam was diagnosed proved to me that I would rely on the listening ears of loved ones. I talk my way through the confusion, grief and pride. Boy, oh boy, I do love to talk!

I plan on this blog being a perfect place to update you on how Liam is doing. I know that you love Liam, and I’m so thankful for such caring friends and family.