Skip to main content

eSpecially Parents June Edition: Michele's Story


Marriage and having kids is hard work to begin with but when you throw in a baby with a life threatening disease and developmental delays that is the true test! I’m not going to say our marriage is perfect or horrible because I believe we are somewhere in the middle.

Some days I want to hit him over the head with a frying pan but then other days I adore him but I think that is normal even for couples that do not have the struggles we face. I think the key to marriage, whatever hurdles are faced, requires both parties to work harder than anything else in life.

Rich is a wonderful father and Ethan idolizes him. They often play “cars and trucks” together. When Ethan isn’t feeling well he cries constantly, wants to be held all day and night and we are stuck in the house for days or weeks. So I can go a little stir crazy.

Rich understands that on certain days if I don’t get out of the house by myself that I will turn into a monster! He participates in feeding, bathing and putting Ethan to bed, no questions asked, just so I can be an “adult” sometimes!

Even though he does spend a decent amount of time with Ethan and has been to many doctor visits, physical therapy sessions, etc., Rich is often in denial about his disease and our situation. He can’t seem to grasp the fact that our lives are changed forever. He just expects things to be the way they were before Ethan, 2+ years ago. This is probably the biggest strain on our marriage.

We are very different in the way we handle things which most of the time is advantageous but in Ethan’s case, it can be very tricky. Everyday is a challenge for our whole family. We have had many joys and disappointments. I can honestly say that I wouldn’t want to ride this rollercoaster with anyone else but my husband, Rich. He’s an amazing co-pilot and partner on good days and bad!
This is us at Relay for Life - It's a fundraiser for research for all cancers. Rich's students asked him to do it. He won 2nd place in the Miss Relay contest. Men dress up as women & walk a lap around the track & collect donations in their purses.  Haven't laughed that hard in a looooong time!!


First time eSpecially Parents reader? Check out the series here.

Comments

Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h

Kids Who Volunteer

On Saturday, Kidz That Care , a nonprofit organization in Charlotte, visited Ben's Easterseals UCP group home to "Pack the Pantry" with groceries and beautify the front porch with flowers. Ben joined the group outside and watched them plant poinsettias, sweep leaves and wipe down tables.  I wasn't sure how engaged Ben was in the activity but when I tried to take him for a walk, he made it clear he wanted to stay and observe. He hugged the one adult with the group (not the photo above).  When the group was leaving, Kidz That Care asked to take a photo with Ben. I noticed how Liam, one of the teen volunteers, kneeled next to Ben rather than stand behind him. Usually people not comfortable around Ben are hesitant to get close. I was impressed with Liam's willingness to bend down and be at his level. Then Ben leaned in for a hug and held on to Liam for several minutes. Ben's hands were tight around Liam's neck and he kept his head on Liam's shoulder. It w