This is a birth announcement – of sorts.
Here in lies no measurement of weight or inches. There is no baby name to share, no blue booties or pink bows. Instead, I have a birth story. It is my own and it’s still in progress. I’m becoming a mother this week!
This birth story begins with a mother’s confession: I have not been well. Uncertainty and worry have set up permanent camp in my mind with real fear of spreading to my heart. Everyone knows a disease that spreads is almost always deadly. I have been paralyzed with worry and self-pity. The events of our recent past (ok, our whole 3 year marriage) have started catching up with me. There is one event in particular that haunts me and mocks me with its reality so much so I have started to consider the possibility of Post Traumatic Stress.
With the girls’ blood samples sent off to the lab and another challenge all but imminent – I started to, well, lose it. I’d go to bed and wake up 2 hours later just to worry the rest of the night away with worry for the girls, for Joseph, and for how I would handle the next thing. I’d ask myself how I could possibly deal with any more, and then wonder why I wasn’t stronger, holier.
I finally let myself hear the voices of all our friends, family and acquaintances, “I don’t know how you do it, I can’t image living your life, I just can’t image.”
You can’t image because you’re not supposed to. I can’t image and it’s my life. When we image how we would react or make it through a certain challenging situation, we cast ourselves as the staring player. We forget that we are fallen. But, we are separate from God! Therefore we cannot image or attempt to predict the role He plays in the events of our lives. He gives us the grace only at the moment when we need it. He’s perfect like that – and we are to trust in His perfectness.
To be honest, the “I can’t image” comments really bug me. I know it's just people showing their love and concern and I hold nothing against anyone who has ever muttered these words to me. But, it makes me feel a lot of pressure to be strong. Nothing puts pressure on a person to keep it together more than praise over how well you are keeping it together. For me, the pressure makes me withdraw a bit from my friends because the only way to really share myself is to share how I struggle, and I can’t do that when I am “keeping it together.”
For this reason I am widely and inappropriately honest about myself and my life on this blog. That is out of character for me. I’m actually not a sharer at all. But, here I am, emotionally naked for my friends, family and strangers to read! It’s my lifeline and I’ve decided not to apologize for it or for any of the “God talk” it brings. I don’t usually do a lot of “God talking”.
When health problems are always lurking in the shadows of your family life, the devil lives in the “what if’s” and worry parts of your heart. There are real things we must prepare for and these things have dictated every major decision we have made. However, responsibility and preparation can easily take an ugly turn into unneeded anxiety.
When this happens, my friend Krissy tends to remind me that, “These are problems for future Holly.”
I then remind us both that, “Future Holly sure has a lot of issues. It’s a really good thing I’m not her!”
When I do become future Holly, I trust I’ll have the grace to be her. God will fill the voids in me and seal the cracks in the foundation of my trust and faith. So, no, I can’t image some of the past events of my own life. There must not be a need for me to, as I currently don’t have the graces to do so. This is the blessing of our life!
As we approached this Lenten season, I prayed about what I should give up and what I should add to my spiritual life. This year it was a difficult prayer for the first time. I eventually came to realize why. I have been sanctified by a rare blessing. I don’t have to suffer the pressures of defining and discerning what our sacrifices should be or what cross it is we are bearing. We have clearly been told what our limitations and struggles are. Many wander for years, painfully trying to discern and define what it is God is calling them to. What a gift our family has been given! We are to turn to Him for comfort and the strength to take up our cross, and praise Him for reveling Himself to us in such a definitive way! So, this Lent I am not making any additional sacrifices. Instead, I am working on carrying the crosses I already have in a better way, with poise and in thanksgiving.
I trust this was the perfect Lenten journey for me because God has granted me the grace to live this time in thanksgiving. This time, His grace came in the form of 2 very precious ladies - and I am their renewed mommy.
This Thursday a string of unforeseeable events created an unheard of situation. My Joseph and I were out to lunch on a date! As we sat, sans children, the call came. Joseph’s specialist was calling with the girls’ genetic test results. There, behind the voice of an awfully serious Dr. were these words,
“Both tests came back negative. Both Teresa and Anna are negative for the Loeys Dietz gene.”
The method of delivery didn’t seem to match the words that were being delivered. In turn, I had nothing to say. I think I eventually and very calmly told the Dr. I thought I was going to cry. He then went into explaining some more tests Joseph needs to set up and I passed the phone across the table to my husband like it was a hot potato.
Then I cried. I cried and carried on like a baby in the middle of Applebee’s in the middle of the afternoon. I cried with no regard for a public place. I cried like only a mother cries in a delivery room. And then I cried some more.
I shot a goofy and authentic smile at my husband and we hugged. I called my parents and my best friend and cried with happy news. I didn’t say “It’s a girl” or “It’s a boy,” I chocked out, “It’s two healthy girls.” And then I cried some more.
To be clear, a diagnosis or state of health never changes or defines our love for a person. We were blessed with an example of the truth of equal worth of all souls through the gift of our third child, Emanuel Elizabeth. Joseph (and now his sister as well) are exactly who they are because of what God has given them. He has chosen to give them Loeys Dietz. Joseph is who is his in part because of this difference and after much prayer; I can confidently say I would not change it. I love him fully- in sickness and in health. I do not want to change him, I want to love him and let him lead me. He needed this to do so.
That being said, it is hard, and something only God can chose. It was our prayer this was not the call of our children. The unknowing prevented us from thinking about the long term for our girls.
On Thursday, I dreamed with my husband about the future of our children for the first time, ever. On our way home, we stopped for an errand and ended up buying gifts for our ladies. In the past few days the rain cloud over my motherhood has lifted and I am seeing my babies for the first time. I’m counting the fingers and the toes and loving every pudgy little one for what it is and not what is might mean.
Joseph says now that the black smoke has been lifted; he is seeing the beauty of each and every feature of our children for the first time and truly seeing the wonder of that person, and not questioning if this or that is a sign of Loeys Dietz. Instead, Tessa’s eyes are beautiful just because Tessa is Tessa and Anna’s likeness to her father is because she is Anna and her mystery is what makes Anna Anna. The features of my daughters are defined by how they reflect the beauty of the gift they are to us and not the fear of a genetic disorder. Without the looking glass of this fear, my children have almost been re-born.
I have 3 children. 1 in heaven and 2 healthy gals here with us.
I now have 4 birth stories.