This has certainly been an eventful 9 months..
Months 1-5 months
July-December:Ethan came a few weeks early and had a surgery and was given a Down Syndrome diagnosis, we took him home, and he had a heart surgery in December. We were worried Ethan wouldn’t be out by his first Christmas, but he was only there a week! All these prayers we have prayed and others have prayed have really shown through to the staff and people we tell Ethan’s story to! We adjusted to having a baby with Down Syndrome and what this might mean for our future. We learned that some of the stereotypes we didn’t even realize we had weren’t true.
January-February: Ethan was put on a waiting list for starting developmental preschool while I sought out and got a full-time position as an outpatient therapist. (Up until then I was working part-time at a similar place, and I was with Ethan on my 3 weekdays off.) Ryan started working weekends so he could be with Ethan during the days, and then a spot opened up at Ethan’s school. So he started getting therapies at the school and had a great time there. I just cried and cried because I wanted to be at home with Ethan. My sweet husband planned a surprise “Mommy-Son” date and made a nice supper. He even dressed in a suit and waited on me and Ethan! (Even though Ethan just had a bottle. 😉 )
February-present: Ethan got very sick with pneumonia, then flu and had to be hospitalized for over 5 weeks. Never understood how bad flu could really get. It was quite wearing, physically and emotionally. It was so, so hard to see Ethan asleep and be unable to talk to him.
It was hard to see his health status progress only to see it dip and worsen again hours later. This whole ordeal has helped us learned how to be more patient. It has helped us to enjoy all the tiny things-the diaper changes, finding Ethan awake when it’s really his bedtime, washing his hair to remove the helmet grime, strapping Ethan into his car set, and even mixing bottles (as Ryan said here It has helped us to make the most out of situations, instead of lamenting about them. Today, for example, is Easter as I’m writing this post. I really had hoped and prayed Ethan would be out for his first Easter-if anything, to have a certain day in mind that he would be at home, finally. That dream did not happen, exactly, BUT Ethan is now on a regular floor where we can hold him, he can play, and he is continually improving. So today for Easter, we brought an Easter basket to Ethan and took some family pictures in the hospital. He was getting tired, so we took them with him in the bed. This wasn’t how we imagined his first Easter, but it was still our little family giving thanks for God giving us a second chance at life, at redemption from our sins. Complaining about still being in the hospital wouldn’t have added anything to our lives-it would have taken away the joy we are called to count this experience, and every experience.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” James 1:2
I have through these hospitalizations how to also trust God in a way I have never had to before. At times is was quite scary. The glory that brought to God to watch Him come through for us was very tangible and exciting, though. I think we appreciate our son so, so much. We enjoy being at home so, so much and don’t complain usually if we don’t have plans because we think “heck-at least we aren’t at the hospital!”
I am going to be honest- I am only human. Of course, there are times when I get sad and feel cheated that we spent the first 3 weeks of Ethan’s life in NICU, a week in CVICU, and a whopping 5 plus weeks at PICU and a regular unit. I hold him and feel like it was deja-vu from a dream of holding him and think “This should not feel so foreign, to hold my son.” But it did at first. I still sometimes think “Wow..my son has Down Syndrome. What does that mean for my family? What else are we going to face?” Those thoughts are only fleeting though, because my hope is in the Lord, and I’m reminded He has given us a precious miracle named Ethan to love. Then I think, “We’ve got this. Me, Ryan, Ethan..God’s got us.”
Ethan is delayed, but we are still going to have those sweet moments, whenever they end up happening. He has had to backtrack on some development from being hospitalized, but he will catch up. No rush.
We still are waiting to see him sit up on his own and crawl. It does make me feel funny at times to see other babies already sitting up and so forth and I think “What? That baby is already doing that, they’re so young!!” Ethan’s developmental delays have also helped us to learn to be patient and appreciate the smallest of advances. Maybe its a strange sort of gift, though…like our souls have learned to quit driving all over the busy city and sit on a porch, sipping cocoa and watching the sunset. Life is hard, but it is also to be enjoyed and reflected upon. This is what we are learning.
After reflecting, it is fun to look to the times ahead, though…
Now comes more fun…planning Ethan’s 1 yr old birthday party, Father’s and Mother’s Day (feel so old when I think about those!), taking spring pictures, playing outside, and watching Ethan make a mess in his high chair with new foods! I know we aren’t supposed to have a sigh of relief because life is always going to have trials…but we are gonna party just for getting done with this hospital stay!