It was a beautiful warm summer day in July 1998 when Michael and Amy united
their love and were married in San Diego. As the sun set after a beautiful day
and the well-wishers bid them farewell on their honeymoon, the start of their
married life was perfect. Even amid their return to “real life,” they were
excited for the adventures ahead and embraced the opportunity to nurture their
marriage in various ways.
Fast
forward to March 8, 2000, Michael and Amy welcomed their first baby boy into
the world. In the last month of Amy’s pregnancy, an ultrasound showed that her ammonic
fluid was low and her doctor felt it would be best for her to have the baby via
C-section. Little did they know at the time, this was God sent and saved their son
from serious, possible life altering complications. Shortly after his birth, Jonathon
started to show signs that he was in serious pain. Upon examination, the
doctors ordered x-rays and it was confirmed that Jonathon had Osteogenises Imperfecta, otherwise known as Brittle Bones. It was noted on the x-rays that he
had seven new fractures from his birth via C-section and there were multiple
bone fractures that were in various stages of the healing process from when he
was in utero. According to the Osteogensis Imperfecta Foundation webpage, there
is a minimum of 20,000 with up to 50,000 people in the US with this condition.
I
spent an evening with Michael and Amy and discussed how they have been able to
develop a strong marriage amid the struggles that come with parenting a special
needs child. I appreciate their honesty and candid responses to the questions I
prepared. The vulnerability is real when you put into words the struggles faced
with simply trying to find balance in strengthening your relationship as
husband and wife.
What was your initial
reaction upon learning Jonathon had OI?
Michael: We were blessed with
a wonderful nurse who took us under her wing. She explained to us that Shriners hospital in Salt Lake City would be a good option for helping trying to
understand more about our son’s condition. We didn’t know what to expect but
felt blessed to have the support of from family and friends but most of all from
each other.
Amy: We turned to the
internet to learn more about the OI. We found that it is easy to feel isolated
when you learn that your child has special needs but as we turned to the
internet, we have joined support groups and even started our own that helped us
connect with people from all over the world. They have become some of our
greatest friends and allies as we seek to understand more about the condition.
What specific things
to you do to enrich your marriage?
Michael: One thing we do is to
take walks together, just the two of us. It gives us time to talk about our
hopes and dreams. I am able to talk with Amy about how she is doing. Of course,
we also talk about the kids and their schedules but we are able to have that time
just with for the two of us.
Amy: When our kids were little,
we tended to have more planned dates when we got a babysitter. Now that they are older, we can slip away for
even just an hour and do things like going to Costco. We love to shop at Costco
together. After we will go and get a frozen yogurt. Things don’t always have to
be planned and perfect. It just about spending time together and focusing on
just being in the moment.
How do you handle it
when you have different “opinions” in your marriage?
Michael and Amy
talking to each other: We make sure we talk things through.
Amy: Since having children,
we have assumed our “roles” and know mentally the things we are in charge of.
Michael: For example, Amy is in
charge of the house stuff. She handles all of Jonathon’s care, which includes his
treatment, making phone calls to doctors and insurance and his IEP. I will
attend his IEP meetings and other important doctor’s appointments but Amy primarily
handles all of the fine details. She also monitors all of the social media that
are kids are on. From the beginning, I have always tried to take notice of when
she is overwhelmed and I will step in and take over her duties so she can have
time to herself. As for me, I am a people pleaser and a problem solver. I want
to fix things and I can’t always do that.
Amy: Both Mike and I are
capable people and can sometimes be aggressive in wanting to fix things that
are not fixable. We make sure to support each other in our roles and like Mike
said, step in when one of us is overwhelmed. Sometimes, the mama bear will come
out and I will roar when I need to put up a fight for my son. It is important to
have confidence in yourself and the relationship you have with your spouse. Mike
is good to back me during those times.
Michael: I tend to take things
for face value where Amy is the one who will question and make sure it is best
for our son, actually all four of our sons.
What three words come
to your mind when you think about Amy?
Michael: First, I would say she
is beautiful. Second, Amy is multi-talented and third, she is committed. When
Amy starts something, she sees it through. (Michael did mention that three
words was not nearly enough to describe his wife.)
What three words come
to your mind when you think about Michael?
Amy: Of course handsome
would be first. Next, Michael is always willing to help when asked. He doesn’t
have any hesitation and will go out of his way to make sure he can help others.
Lastly, he is hard working and tireless.
Do you have any final
comments that you feel would be important to share with other couples that are
in similar situations?
Michael: Don’t quit when times
get hard in your marriage. Amy and I place a strong belief in our faith in God
that helps us through the good and difficult times.
Amy: It is important to
have a foundation of who you and seek to develop that.
During
the interview, I saw how tenderly Michael and Amy looked at each other. I have known
them personally for a long time and have seen through their journey of marriage
that no matter what comes their way, they strive to support each other. I have
learned it isn’t about the big things but focusing more on the little things
that can help make each other happy. Their son has had many surgeries over the past
15 years that have taken Amy and Jonathon to the world renowned doctor of OI in
Omaha, Nebraska. It hasn't been easy but through effort and time, it has made it worth it. The greatest lesson I took away from interviewing them was to
take time for you relationship. It is the simple things of their relationship
that has brought them the most happiness. I leave you with this question to ponder. What specific ways can you seek to focus on the simple things and not
try to change the things you don’t have control over?
We can’t change being
parents of a special needs child but what we can focus on is how to develop our
marital relationship one small act at a time.
By focusing on the simple things of your marriage, find something that the two of you can do where you can connect communicating with one another. Some examples may be:
- Talk a walk on a local trail or around your neighborhood
- Rent a convertible car for a few hours and be truly carefree
- Snuggle together while watching a movie at the drive in
- Go fishing
- Watch the sunset together
- Rent and ride a tandem bike
- Of course, share a treat that you both love
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