Faith and Sharing Retreat

Jean Vanier, founder of L’Arche, felt everyone, regardless of ability, should be given an opportunity for spiritual growth and expression. Out of that conviction came a retreat and small group experience called Faith and Sharing. In many cities in which … Continue reading

Girls Weekend!

Everyone knows Monica loves the Sound of Music. Our good friend Melissa made a dream come true this weekend. Melissa organized a trip to Columbus to see the Broadway production of Sound of Music. Monica packed her bag herself and could not wait to meet up with the girls on Saturday. We were impressed that she remembered to pack things like her earplugs so she could go swimming, a little container to take her thyroid medicine and vitamins, and her charger for her phone. There were four chaperones and four young ladies about Monica’s age on the trip.

They stopped at a Dunkin Donuts for a break and arrived at the hotel mid-afternoon.

They had a blast in the pool. They enjoyed the Happy Hour snacks.

They got all dressed up and headed out to the Ohio Theater downtown.

Monica described everything to us. The theater, the orchestra, the set, the beautiful voices, the children! She loved everything about seeing the live performance. Afterwards, they positioned themselves where the actors came out and Monica got to meet the woman who played Maria von Trapp. What a thrill for her!

13. Melissa

When they got back to the hotel they had pizza and cookies and giggled in their pajamas.

In the morning, they all went to Mass together at St. Patrick church and out to lunch at Spaghetti Warehouse.

This weekend excursion is something we never imagined would happen. We never thought we would have an opportunity for Monica to be included and taken care of so well. We could relax at home and know she was safe and having a wonderful time.

Gratefulness for a Life

When we say our evening prayers, each person in the family says what they are thankful for that day. We are always thankful for each other and a roof over our heads and food on the table. Sometimes we get bogged down with other concerns and forget how much there is to be happy about.  If you listen to the news items today, it could all seem so sad. Physician-assisted suicide, abortion, challenges to marriage and family, quality of life debating, corruption in public figures are all serious concerns. Listening to Monica’s nighttime gratefulness puts everything where it should be. Yesterday was Monica’s birthday, so she had extra items to be thankful for, but nearly every day her list is this long.

Last night Monica said:

“I am thankful that I was born. I am thankful that I went to Mass. I am thankful that the waitresses sang Happy Birthday and brought me cake. I am thankful that I took muffins to my co-workers. I am thankful that I got to give the blanket to Hillary. I am thankful that Danny came to dinner. I am thankful for the balloons and everyone texting me and calling me and emailing me to say Happy Birthday.”

Cake from the waitresses at special breakfast out

Cake from the waitresses at special breakfast out

Blanket Monica made for her friend's new baby

Blanket Monica made for her friend’s new baby

Birthday dinner at home

Birthday dinner at home

A lot of birthday gifts!

A lot of birthday gifts!

I don’t think anyone in the family receives the kind of attention that Monica receives on her birthday, but it is clearly because it is reciprocal! The rest of us are so much more reserved in our own expressions of kindness. Monica really does remember to send cards and call and text other people, not just for their birthdays, but if they are sick or to express sympathy for a loss or to congratulate for an accomplishment. She is always making gifts and going out of her way to show love to others.

 

Monica’s new job and The Disabled Person and Work

Because of a confusion at Monica’s job, Monica has been temporarily unemployed. Sometimes it is difficult for a person with cognitive disability to distinguish nuanced situations. At her last job some of these nuances occurred. On some days she was asked to join the residents of her nursing home for coffee, but on another day, she poured herself a cup and was disciplined. On some days free food was brought in for celebrations, but on another day she was accused of stealing a soda that was left in the refrigerator. She would refer to her phone for the time, but then if it rang and she answered it, it was a violation. Some of these incidents festered and her parents had not heard about them. (They came to light in a later interview.) So Monica has been home for several weeks, taking a breather so to speak. During that time she has greatly lamented her infractions, to the extent she can understand them. She has cried and journaled, but mostly looked positively toward her next venture.

Today her venture began. Her employer has placed her in a new facility which is actually a little closer to home. She was incredibly excited all the past week telling her relatives and friends about her new placement. Mom and Monica went out and Monica bought a watch so that she no longer needs to look to her phone at work…her phone is being safely stored in her locker during time on the clock. A journal book was purchased and inaugurated so that her employer can note any issues that come up. Daily it will circuit between home and work with a brief comment by employer and parents. Monica understands (we think) that it is better if she just eats and drinks food stuffs that she brings from home, and she cannot serve herself anything at work that she has not brought. This is a little difficult, sometimes there are mini-celebrations and birthdays celebrated during break. We will need to keep developing her sensitivities in this area.

So, today at the evening dinner table Monica reviewed her notes of the day and told us with sparkly eyes and cherubic smile all that had happened at work, new friends, new instructions and duties, new work hours. How happy we were for her, to see her laugh and almost trip over her words in her excitement. Then later this evening I was reading and came across this quote from Pope John Paul II’s document on “Human Work” Laborem Exercens (Section 22 – The Disabled Person and Work). I teared up when I read this and was struck with gratitude for all the efforts made by the agencies and employers who have worked with Monica. Despite occasional stumbles, they are participating in achieving this difficult good.

Pope John Paul II wrote in 1981:

“Recently, national communities and international organizations have turned their attention to another question connected with work, one full of implications: the question of disabled people. They too are fully human subjects with corresponding innate, sacred and inviolable rights, and, in spite of the limitations and sufferings affecting their bodies and faculties, they point up more clearly the dignity and greatness of man. Since disabled people are subjects with all their rights, they should be helped to participate in the life of society in all its aspects and at all the levels accessible to their capacities. The disabled person is one of us and participates fully in the same humanity that we possess. It would be radically unworthy of man, and a denial of our common humanity, to admit to the life of the community, and thus admit to work, only those who are fully functional. To do so would be to practise a serious form of discrimination, that of the strong and healthy against the weak and sick. Work in the objective sense should be subordinated, in this circumstance too, to the dignity of man, to the subject of work and not to economic advantage.

The various bodies involved in the world of labour, both the direct and the indirect employer, should therefore by means of effective and appropriate measures foster the right of disabled people to professional training and work, so that they can be given a productive activity suited to them. Many practical problems arise at this point, as well as legal and economic ones; but the community, that is to say, the public authorities, associations and intermediate groups, business enterprises and the disabled themselves should pool their ideas and resources so as to attain this goal that must not be shirked: that disabled people may be offered work according to their capabilities, for this is demanded by their dignity as persons and as subjects of work. Each community will be able to set up suitable structures for finding or creating jobs for such people both in the usual public or private enterprises, by offering them ordinary or suitably adapted jobs, and in what are called “protected” enterprises and surroundings.

Careful attention must be devoted to the physical and psychological working conditions of disabled people-as for all workers-to their just remuneration, to the possibility of their promotion, and to the elimination of various obstacles. Without hiding the fact that this is a complex and difficult task, it is to be hoped that a correct concept of labour in the subjective sense will produce a situation which will make it possible for disabled people to feel that they are not cut off from the working world or dependent upon society, but that they are full-scale subjects of work, useful, respected for their human dignity and called to contribute to the progress and welfare of their families and of the community according to their particular capacities.”

Faith Reflections

In the book, Cheaper By The Dozen, it is explained how Frank Gilbreth would control the mealtime conversation by announcing “Not of general interest” if anyone began a topic he deemed inappropriate. So I am warning you now, this post might not be of general interest.

Our family’s faith life is very important to us. When Monica was young, we sometimes wondered about her capacity to have a relationship with God. We taught her prayers and encouraged the same participation in all the traditions of our Catholic faith as our other children. She has shown us again and again her love for God and the people around her even if she can’t always put it into words.

Recently, she let us know that it was unfair that she never had a turn announcing the mysteries when we said a family rosary and she never got to lead the Litany of the Blessed Virgin Mary. But there are a lot of hard words!  We realized that she really wanted to do this, so we gave printouts to her speech therapist and asked her to help Monica with the words. She is so pleased now to take her turn and reads the mysteries with such expression it melts our hearts.

One family tradition we have is to acknowledge our children’s Baptism anniversary. We sometimes let them request their favorite dinner or light their candle, but usually we just remember to tell them Happy Anniversary. Monica never lets us forget her anniversary.

This year Tim was on a business trip to the Far East, so we were only communicating by email. He sent Monica the email below to let her know he was thinking about her anniversary.

My dearest Monica,

Happy anniversary of your beautiful baptism!

I think you know that you were so weak when you were born, because your heart was not working all the way, that we asked the priest to baptize you in the hospital. And he did baptize you in the hospital. And then we knew that you were a child of God. And if you died then, you would go to heaven, because God had adopted you as his own daughter Monica.

That is why sometimes I say that you are God’s daughter and I am very lucky to be allowed to share your house and to raise you with Mary Ellen and to go through life with you.

Certainly you know that your mother and I are very glad that you were sent by God to be in this house and be our daughter to be raised by us. But before we met you God knew you, because he made you first and he knew you first. God loved you first, because God thought of you first, and because he thought of you, you became real, you were a person at his having thought of you.

When God made you with his thoughtfulness he placed you in your mother’s womb where you would grow until you were born as a little girl. So when we saw you we knew you were made to be his daughter.

After you were home a little while we knew that you were strong enough to go to the church and there we showed everyone that you were his daughter and the priest came again and told everybody that he had baptized you in the name of the Father, and of the Son, and of the Holy Spirit while you were in the hospital. Everyone was very happy, and everybody prayed for you then that you would grow up to be a lovely young lady who would be a good friend to God and that you would know him and love him every day like he loves you.

Then, we came home from the church and had a party to celebrate what had happened in your life. It was a great beginning of a little baby girl who would grow up to become a very wonderful young lady that we all know, God’s daughter Monica, our friend Monica.

It is a good day to remember and celebrate. We are thankful for everything that God has done!

Love, Dad

And here is the email that Monica sent in reply:

Dear Dad,
Thank you for the email.
How is your trip? We miss you.
We went to St. Stephen church this morning.
My brother John was server. It was so nice.  We saw Mr. Monroe at mass this morning.  My brother John goes to scout meeting without you tonight.
Thank you for remember my baptism anniversary.
Thank you for praying for me. I really love your heart always love my life. You are so be a father being with you and left the hospital and you are working different place with out with your wife. I prayed the rosary and my prayer. I learned to talk now. It really helps me to practice my piano every day. And you are so sweet of you be a father in my world gave me a toy and walk with me in the hike with my family when I was a little child.

Love
Monica Jakubisin

Sometimes I correct her emails, adding the punctuation, etc., but I just couldn’t change this one when I could see her pouring out her heart.

I’ll try to lighten up a bit by sharing one more story. She loves getting her turn to light the candles during Advent. Tim loves encouraging this challenge, but he also sometimes closes his eyes during the prayers. Thankfully I was watching when Monica’s hair began to go up in flames! No harm done.  She now knows to light the furthest candle first.

Happy Advent!

2010 – Monica Age 18 – Work Experience, Piano

Fairview High School has approved Monica for the Community Work Experience program at Polaris Career Center. She is in a rotation of jobs at Southwest General Hospital learning many skills that will allow her to be employable by graduation if not sooner! She loves working and the staff love her. In the afternoon Monica returns to Fairview HS for classes. Her curriculum there is very practical and focuses on functional math and language skills. Maybe you have gotten a note from her? Monica corresponds more than anyone else in our family, remembering birthdays, events and concerns. She loves to go to daily mass with Tim and Greg and outpours cheerful enthusiasm. And she tickles the ivory! Every day she practices piano with an amazing self motivation. On Sundays, when we have family spiritual reading, she eagerly participates and focuses on speaking very clearly. Greg and Monica attend parish youth group meetings and events, with Greg keeping a watchful eye on her without getting in the way of her making her own friends.

A Fairview Friend

A Fairview Friend

2008 – Monica Age 16 – Bridesmaid

An excerpt from the Christmas Letter 2008

Rebecca and David made their wedding a beautiful family celebration having the brothers as groomsmen and Monica as a bridesmaid. When the other bridesmaids arrived a few days before the wedding, we were thrilled they insisted Monica join them for the shopping trips and luncheons. While the wedding may have been a major event — it was not the only amazing thing about 2008. In March, Monica had her Confirmation. She chose Therese for her Confirmation name, fitting because St. Therese had a beautiful relationship with her father and older sister and loved Jesus in a simple childlike way.

Monica loves high school. Besides the stimulation of all the students, she loves the pre-vocation class which has her working in the dining room at a nearby nursing home. Monica has been teaching us new ways to fold the cloth napkins for a formal dinner.

Monica's napking folding

Monica’s napking folding

2004 – Monica Age 12 – Family Trips and Traditions

An excerpt from the Christmas Letter 2004

Midsummer Dan and Gabe participated in the week long International Juggling convention held in Buffalo NY this year. Mary Ellen took the little ones and visited local museums and Niagara Falls. Rebecca and Tim stayed home to work. Rebecca worked this spring, summer and fall breaks at Fairview General Hospital in food preparation and delivery.

Late summer — we took a two week road trip with godson Peter St. Quinton to South Dakota and Wyoming. We went camping and hiking in the Badlands, climbed Devils Tower, toured famous Needles Parkway, visited Mount Rushmore and other sites.

Monica still loves school (5th grade) and her reading is really coming along.

There have been many other events and trips this year but some of our fondest memories are family visits and seasonal gatherings with friends and family.

Two of our best weekly routines are getting together Saturday morning to ‘white board’ the weekend and the upcoming week (plan it out on a whiteboard) so everyone gets everything done without conflicts, and being together on Sunday for an hour of spiritual reading. Spiritual reading is something we started about a year ago and we take turns reading a page or so each… out of the ‘current book’. These are books that explain the faith or the virtues clearly or a biography of an inspiring person. Monica and John listen or quietly look at their own books.

2001 – Monica Age 9 – First Sacraments

An excerpt from the Christmas Letter 2001

Monica loved the routine of summer school every morning and the boys rode bikes to swimming lessons. We also learned a little more time management with Gabe cutting three lawns and Rebecca babysitting 2 mornings a week and doing yardwork/housework for another woman unable to do it herself. Gabe and Dan attended Boy Scout Camp for a week and Dan attended a leadership camp in Pennsylvania. Rebecca was a counselor this year at the one-week girls camp she had attended in Maryland on Chesapeake Bay. I did laundry.

Second grade is an important year for preparation to receive the sacraments and we are so pleased with the special-ed religion classes offered for Monica. We’ve been working on Examination of Conscience with her and just like our older kids did, she reports first the faults of the next youngest sibling! Monica may not always be able to express it, but we can tell she has a wonderful relationship with God and we are so happy she’ll be celebrating First Holy Communion in May with her class. We’re very happy with her regular schoolwork too. Her teacher makes modifications to the classwork so that Monica is challenged to work hard and yet the work is within reach. Monica gets along great with her classmates.