Difficult

This week I have been struck by a word that seems to be hanging out behind me, I try to ignore it, thinking if I do, it won’t tap on my shoulder and rear its ugly head. The word is difficult. I called my mom this past week about some tough decisions I needed to make, and through tears I ended up saying “Haven’t I had enough ‘hard’ this year? Can’t I get a pass?”

Later that same day I met up with a friend who just wanted to talk. I sat with her and cried as she told me she had just had a miscarriage. There I was swallowed up by the ridiculousness of thinking my silly decisions were hard. This was difficult, I sat with her and I cried.

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Joanna Wrightdifficult, connection, hope
Good Friday Thoughts in the Hospital

I am currently sitting on the bench at the back of my son’s hospital room. Three days ago he had open heart surgery to correct a his atrial ventricular heart defect. He has just had his breathing tube removed and he is doing great. During that procedure however, I was not. I stood frozen in the door way, hands covering my eyes even though I was peeking through. I was unable to help my crying little baby while 4 nurses and a doctor huddled around him to ensure he was doing fine as they took him off the device that was making sure he kept breathing. The doctor turned around once he was satisfied, saw me and said “Oh my goodness mom, don’t worry, he is doing great. Crying means he is breathing.”

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Joanna Wrightfaith, good friday, unconditional love
Living by Faith

Tonight is the eve of World Down Syndrome Day, and it is the first year I have ever actually known of its existence. I now tally this up to ignorance and a general “head in the sand” experience I have had to anyone who is vastly different than me in the past. Leading up to this day has been a mix of emotions for me. I have enjoyed seeing the new community I have been thrust into, celebrated so beautifully. I have heard countless stories of many family’s experiences, and how children and adults with Down syndrome are thriving as they navigate this crazy life. But I have also experienced a heaviness. A heaviness of uncertainty.

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Joanna Wrightfaith, world Down syndrome day
Ben's Birth Story

Toward the end of my pregnancy, my doctor in Lubbock cleared me to continue to only have my monitoring done in Amarillo, rather than making the trip to see him every few weeks. Our baby’s heart was doing well and he cleared me for delivery in Amarillo, rather than Lubbock or Dallas. Our baby would not need heart surgery for several months, a huge answer to prayer! The stipulation to this arrangement was that I would need go to my OB twice a week for fetal monitoring and then a third time for a sonogram, every week until Ben’s arrival to make sure he wasn’t under too much stress. I quickly agreed and got the appointments set up at the office in Amarillo. Several weeks of testing went by with only a few tests showing small indicators of an issue, nothing to be concerned with though.

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Joanna Wrightbirth, c-section, down syndrome
Finding Rest

The past few weeks have been interesting ones. I think whenever we have trials in our own lives, it makes us more sensitive to other people in our lives. I find myself able to read other people easier, or when I reach out and ask for prayer, I get a list back of things to pray about for the other person.

I am learning to see what a great blessing this has been for me, while I have been experiencing pain. I have found great rest in community of saying, I too have been hurting. It has allowed me to take my eyes off myself for a moment and push my arm under the load a friend is carrying and try to make it a little lighter.

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Joanna Wrightlove, faith, friendship
Unknown

For the most part my life has played out pretty much according to plan. Even if it wasn’t planned, I can’t say it has been unexpected. As I get older the more and more I realize that this is a blessing I never knew to count. There were no surprises in the stability of my home life. My parents have always cared deeply for each other and loved on their six kids with care for each of us individually. I always had clothes, and even though I joke about having a lot of hand-me-downs, I also had a lot of new clothes to wear. I never once questioned where other needs like food or shelter would come from. Even beyond these basic necessities that I was so blessed to be oblivious to the fact that they are not a given for everyone, my life folded out naturally and easily and with a lot of goodness.

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Joanna Wrightdown syndrome, unknown, grief