Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart surgeries, can put an unbelievable amount of stress on a marriage. Before your diagnosis, it’s like your life is a nice tiny little ball of neatness (for the most part). Then, you get your diagnosis and the ball gets thrown in the air and completely explodes. Then, until your baby is born and for the first 6 months to a year of your child’s life (sometimes longer, depending on your child’s complications), you’re trying like mad to keep the pieces in the air as much as you can. You’re trying to keep things from hitting the ground. And you’re so busy trying to keep the important pieces (you know, keeping your kid alive) up in the air, you’re pretty much ignoring the unimportant ones. You’re making spur of the moment decisions on what’s unimportant enough to hit the ground.
Then, once things settle down, and you’re far enough past the Glenn that the surgical experience starts to fade and the Fontan seems light years away, you finally have some time to look around and examine all of the pieces of your formerly tidy little ball of a life. Some pieces are bent, some are broken, some are just flat out missing. Where’d they go? God only knows – you were too busy juggling the other pieces to notice. And you try to scoop everything up into that tidy little ball again, desperate for order amidst the chaos. This is what I lovingly refer to as “post-Glenn Fallout” period.
You have to spend time getting to know this new life, this new “normal.” Maybe you allow yourself to process the grief – maybe you don’t. After all, your child is thriving, so what right do you have to feel any sense of grief? In so many ways, this life is SO MUCH better than the life you had expected. But it’s still different. And you can’t ignore the ways it’s different. And, as tempting as it is, you can’t ignore its effect on your marriage or relationship.
When we were first diagnosed, we met another family whose little boy was gearing up for his Fontan. They were such a loving family – the mom and dad were both so supportive of their sweet little boy. But my mom told me later that the dad pulled her aside and said his biggest advice was NOT to ignore our marriage during that first year of our baby’s life, that it could have devastating consequences, that that was his one big regret. His son survived the Fontan with flying colors. Their marriage did not. And they are just one story. So many, many families have similar stories to tell.
So, when we realized that we were allowing ourselves to drift complacently through this “Post-Glenn Fallout” period, and we were pulling apart instead of together, remembering that family, and so many others like them, we sought out a pastoral counselor, a trusted and loving confidant who knew us, and our family. Someone who could help us navigate through this next stage in life, and pull back together into a cohesive unit.
It has been amazing. One of the best decisions we’ve made. We’re already making such good progress – toward one another, for the first time in years, instead of away. What a wonderful relief.
One of the first “assignments” from him was to write Bodie’s story. We looked at one another and said “sure, we have his medical history already written up.” He stopped us and said “No, I don’t want BODIE’S story. I want to hear how Bodie’s story has affected AMY. And how Bodie’s story has affected DUSK.” Interesting. He also asked us to write about what we’ve learned and about our celebrations and accomplishments. We talked a lot about celebrating milestones. And I realized that although we have been very good at celebrating how far BODIE has come in this journey, we have NOT been very good at celebrating how far the REST OF US have come – Dusk, me, Sierra, our marriage, and our family.
We protested a bit – it feels weird to celebrate how far we’ve come when we still have so far to go. Wouldn’t we be somehow jinxing things? But he gently reminded me that, much like soldiers at war, just because we know we have another tour of duty coming up does NOT mean we don’t celebrate each homecoming from a tour. So, in the next few blogposts, I will be sharing both Dusk and my writings of celebration, and our trip this last weekend, our first weekend away together since before Sierra was born!
I know that in the grand scheme of things, diabetes is nowhere as serious as HLHS, but I completely understand how dealing with a chronic illness day in and day out can take such a HUGE toll on your marriage-- Aaron and I are struggling now to make head or tails of where we are (not where we are as parents-- just where we are as husband and wife) because all we've done for the past 3 years is be "mom and dad"... Thanks for being so candid-- it's nice to know that we're not alone in the struggle. *hugs*ReplyDelete
Being a HLHS/transplant family, I completely understand, we are currently working on healing our marriage. You said this all so well.ReplyDelete
So often when children arrive suddenly the child becomes the center of the universe for both the husband and wife. It takes no time at all to love this little bundle of joy, yet we forget sometimes this creation, this little human was the direct result of passionate love. This is a Love that should be cherished, it should be treated like a priceless possession, a fragile flower that needs constant care, water, sun, even pruning. It takes effort, because if it is neglected it will die.ReplyDelete
You know how fragile this life can be, we don't know how long we have that person who made our heart sing when we said "I DO". Never in my wildest dreams did I ever think I would be alone. I was going to grow old with my husband and we were going to rock grandbabies on our knees. Instead, I ended up rocking my baby son having to tell him stories about his father.
Don't ever take for granted that you have more than just today. Cherish your marriage and work to love each other. Your children are a gift from God and He will bless you for keeping things in order. Love God First, Husband/Wife second, then your children. Praying for you both!
Amy, you are an awesome, amazing, and inspirational person. Thanks for sharing your story. I can't wait to read more.ReplyDelete
May God Bless you both on your journeyReplyDelete
Hey You Guys,ReplyDelete
I sure am with you all. I have been enjoying corresponding with Dusk through e-mail.
Many, many blessings to you,
Bless you, sweet Amy! This is a lovely and vulnerable post. I am so happy to hear that you all are working on things, through things and with things. I am thinking of you...ReplyDelete
Thank you for being so vulnerable, open and honest in sharing your journey.....your whole journey. So many of us are experiencing the same thing. Having a complicated CHD child definitely affects every single aspect of your life, including your marriage. When the dust settles it is amazing to find how many pieces we let fall and need to work on picking up again. Saying many prayers for you and your family Amy. Again, thank you for sharing your heart here. I look forward to reading your writings and cheering you all along as you work on healing!ReplyDelete
A few years ago, I got the best advice from a coworker. He had been married 30 years and was getting a divorce. He said when the kids moved out, him and his wife were strangers. Everything for so long revolved around the kids, that they never took the time to truely keep together as a couple. He told me to always remember that one day your kids grow up and leave and your marriage has to be strong enough to survive that.ReplyDelete
And that's just a "regular" marriage, now add in a special needs child and the stress factor that comes along with that.
We have worked hard at being Matt and Jennifer and not just mom and dad.
I pray that this journey leaves you to a much stronger relationship!
Amy I have read this post over and over again and it startled me how much it hits home for me except for the being proactive part- we're not there. We are post Fontan and just now starting to look around and pay attention to a marriage that is drifting more apart than together. I have such respect and admiration for you and am looking forward to your posts. Keeping you and Dusk in our thoughts and prayers. I'm so happy that you two got away for the weekend- I hope it was a wonderful, relaxing and rejuvenating weekend. LOVE YOU!ReplyDelete
I'm really looking forward to this! Thank you for sharing your heart and your family! :)ReplyDelete
Amy, I love that your words meet so many different people just where they need it. I believe that is God shining through you. You take up your torch everyday, and inspire others to do so as well. Blessings.ReplyDelete
Oh I love and appreciate this post so much. Thank you for sharing!ReplyDelete