Homecoming

And… we’re back! I have to tell you that taking time to pause during this Covid / quarantine

really had me thinking about how our life would be if Chelsea were still here with us. Quite honestly, not very different. This was our normal way of life. We sanitized everything! We washed our hands all the time. We allowed no one into our home if they had so much as a sniffle or had been around anyone suspected of having any type of illness. We never made any extra trips to the supermarket or travelled unnecessarily. During winter months, we lived like hermits basically. We made masks a fashion statement before everyone was ordering them off the internet! If you had to be around our girl and you had allergies, you were given a mask and gloves at the door. This was everyday life for us. Extreme? Maybe. But when your child’s life depends on her staying healthy, you do what you have to do. To be honest, daily I give thanks to God because I know we don’t have this worry any more. It is such a strange place for my momma heart to be. I would give anything to have her back but I know that she is safest in His arms. Then, my prayers immediately turn to all of our friends who still have children in the same situation that we were in. How scared they must be every day. I know God will take care of them just like he always did with us and I know that He doesn’t want us living in fear. So for now, I will just ask that if you feel led, please offer up a little prayer for all these special needs kiddos and their families during this unprecedented time.

As I mentioned in our last blog, we completed our ventilator training in 8 weeks; record timing, but our education in caring for a special needs child had only just begun. Keep in mind that we were just children ourselves! We were 23 years old, both working full time jobs and still college students, or trying to be. We would soon learn that something had to give and for us, that would be our education for the time being. At this time, I was working full time and going to school part time and my husband was doing the opposite; working part time and going to school full time. We were so close to finishing our degrees, however, time with our girl was so precious. When you’re told that you may only have six months with her, everything changes.

Let me be clear, we knew that we wanted a family from the day we were married. We planned for Chelsea. She was wanted and loved from the day we knew she existed. We never expected there would be complications. What couple at any age, plans for their child to have such a rare medical condition when none exists anywhere in their families? There were so many things to take care of in preparation for her homecoming. It was so much more than having a car seat to leave the hospital. There were the interviews with nurses that had to take place in her hospital room to ensure that we would have help and support once we got home. There was so much medical equipment that had to be delivered and set up in preparation for her arrival. Her little nursery went from resembling a baby room to more of a hospital room. This broke my heart. We did everything we could to try to camouflage all of that but the constant whirring of all the machines 24/7 was a reality check that this was not lullaby land.

The day finally came when we were ready to be discharged home! It was a cool, crisp day in mid October. We rehearsed our three hour drive and planned to make stops along the way to suction her trach just as a precaution. That was the most intense car ride of our lives. We were loaded down with medical supplies, equipment and our most precious cargo of all was sleeping in the back seat. Our family and my best friend were all there to greet us when we drove up. There were pink balloons and a big sign in our front yard. A freshly baked cake in the shape of a pink teddy bear was proudly displayed on the kitchen table that read ‘Welcome home Chelsea’. We would all learn how funny this would be years later as Chelsea would inform us rather early on that she absolutely hated the color pink! LOL

There was so much to learn once we were home. We are so grateful for the nurses, doctors and therapists that we had. They truly became family to us. They guided us through many firsts; first tracheostomy changes and first g-tube changes; not exactly what you were thinking right? There were alarms that would go off morning, noon and night. This was the beginning of us learning to sleep as if were were on call in a firehouse. We would soon be trained for any emergency and handle it like a pro. More of those stories to come. We kept meticulous records of everything! We were baptized by fire in so many ways, especially as we dealt with the social services systems. Talk about an eye opening experience!

You see we both planned to return to work once we were settled. While there was nothing I would have loved more than to be a stay at home momma, we had no choice than for me to go back to work as I was the one that was carrying major medical insurance for our family. This was simply something we could not be without, especially now. We were instructed by our Case Manager to meet with the Social Security office in light of our daughter’s medical condition to see if we might qualify for assistance. I will never forget that day. We sat for a very long time in that office and when it was finally our turn, our appointment didn’t take very long to complete. We were asked several questions. Things like how much we had in our checking and savings account and even how much money we were carrying on us that day. The thing that really blew me away was when the lady told us that we would actually qualify for assistance… if we either divorced or had another child. Yes, those were our two options. Otherwise, we were out of luck. I’m just going to leave that right there because I do not want to turn this into any sort of political debate. Just suffice it to say that we politely walked out of there determined more than ever to take care of our girl and ensure that she had everything she would need to live a full life.

We are so thankful for the many friends, family and organizations who banned together and raised money for our family during that time when we first got home from the hospital. It was all because of them that we were able to purchase a van with a wheelchair lift so that Chelsea would not have to be homebound. She was able to fully experience all that life had to offer! Chelsea loved going to church, shopping, crafting and the movies. We never had to worry about transportation to and from medical appointments or bringing her to the hospital in the middle of the night if she needed. Our community always accepted her and loved her unconditionally. She was pretty adorable and never left anyone without touching their hearts forever. They say that everyone on this earth is here for a purpose. I was witness to the fulfillment of my child’s. What a gift!

If you’re reading this blog and knew our girl, I’d be so honored if you would share your Chelsea story with us. Please leave your memories in the comments below.

With so much grace and honor,

Wendy