Well, so far I have discovered that blogging about food is fairly easy for me. Blogging about navigating through motherhood with a special needs twist, that’s challenging!! There are probably a few reasons for this. First, I am not a writer by trade; I am a writer by passion. Second, I have a lot going on in my life so I find it difficult to separate things and make coherent thoughts! Thirdly, blogging about food is fun, blogging about life is not always fun!
So, I thought maybe I should try setting the post up in a similar way to my recipe posts. I could have a topic, then ingredients, then a summary about it all. I am gonna give it a try.
1 super adorable kiddo
1 loving stay at home momma
1 hard-working daddy
A lot of developmental challenges
A bunch of medical complexity
Tons of unknowns
Several dashes to the hospital
Some new opportunities
Changes in relationships
Some super supportive parents
A couple much-needed social interactions
A new understanding of faith
A whole lotta love
One super adorable little angel came into our lives two years ago. She was born with genetic issues and has experienced two years of medical challenges and delays in her developmental milestones. We love her more than words can describe. I stay home with her to help keep her safe, identify her potential and help her to maximize that potential. Steve works many hours to keep the bills paid. Though this life is filled with challenges and uncertainty, we would not change it. Our daughter is an amazing blessing and she has made our lives fuller and richer. We love her to the moon and back again, and then some.
Though we are thankful for this life, we have had a lot of changes. We’ve lost touch with so many people in our lives because we were consumed with our own lives. We were so busy dashing to the hospital ER, spending weeks in the hospital far away from home, going back and forth to doctors appointments, and fretting about Delainie’s safety and our financial stability. It left us little time and thought to reach out to friends and family.
Now that we have learned to live with the new lifestyle and are ready to incorporate more of the outside world into our daily lives, we don’t know where to begin. Relationships have changed and we don’t fit in the way we once did or the way we pictured we would after having a child.
To our disappointment, we have noticed that we are not the first people a family thinks of when their kid needs a play pal. We are not the first people folks will ask to join them on an excursion. Folks feel uncomfortable when we use the g-tube to feed Delainie or give her meds. They also don’t understand the fear we have with her seizures. We realized that people no longer start conversations with, “how’s Delainie”. We have even noticed that we can have a whole conversation with someone and they won’t even mention her name.
People were very supportive and kind to us while Delainie was in the hospital and we will forever be grateful for that. Friends, family and perfect strangers reached out to us and we are so thankful that they did. However, our relationships changed drastically while we were not looking.
The fact is, while our lives were stuck in a scary limbo with our child. her future and ours, the lives around us went on. Every day we wake up and wholeheartedly commit to this life, but no one else is expected to do so. We are finally ready to move forward with people and life but the people have already moved forward without us. Nobody’s fault, it’s just how life happens.
So, it has taken some confidence from us and some good friends and family to help us figure out where we fit and feel accepted. We have a few friends who accept us without reservation. We were caught up in our lives, they moved forward in theirs, but they hold no grudge against us and we hold no grudge against them. Our friendship supersedes the trials and tribulations we have had in life and that is something to be cherished.
This summer we had a chance to visit with great friends that have been out of the country for a few years. Though years, miles and changes have been added to our friendship, the love remains. The last two years have been a scary rollercoaster ride and these friends have not been here in person but have always been with us in spirit. We are very lucky to be blessed with such a loving, supportive and forgiving friendship.
This weekend, when I was feeling pretty bummed as a whole, we received an invitation for dinner to a friend’s house and had a visit from Steve’s brother, our sister-in-law and our niece. They have no idea how much those visits meant to me and Steve. I had been feeling isolated as a stay at home Mom with a medically complex and developmentally delayed kid; truthfully, I was more than a little blue. Their invitation and visit really helped me to feel less isolated and much more accepted. I watched their kids interact with Delainie, they love her without question or fear and that melts my heart more than anything. These visits really made my weeknd and brought me out of my little, loneliness pity party.
We are in a good place, we have a lot of love and unwavering faith. We are ready to figure out where and how we fit in. We are ready to incorporate those folks who have been a part of our lives and want to continue to be a part of our lives. We are ready to let go of those folks who have been a part of our lives but do not want to continue to be a part of our lives. Finally, we are ready to meet new folks who accept us for who we are and want to embark on a new friendship with us.