special needs family – Catholic Sistas

Parenting is hard work for any person, whether you have one, or two or 8 or 12 children. You learn to strategize, categorize needs, make schedules, chore charts, and instill any other number of flow charts so that life can come together with some semblance of normalcy. It’s not different for me, parenting 4 children, more than half with special needs, keep the house running semi-smoothly, running between 4 different schools throughout the school year… solo.

Yes. Solo.

My answer to that common question of how I do it is simple; I survive on grace. And coffee. I’m not some extraordinary super-mom, and I have no secret recipe. I simply have grace. (And don’t forget the coffee.)

Though I lack the partner that I wish I had to help me carry this yolk, I do have a great Advocate that I call on, minute by minute, to help me through the tough stuff, and the daily grind. I would be failing miserably in my motherly vocation without the grace that God showers down on me in every second of the day. He is my help, my sounding board, my advocate, my strength, my confidant, my advisor. I wish I could tell you that I just ring him up and have great back-and-forth conversations about the kids everyday, and/or that He advises me and consoles me when I struggle with something. But it’s not so. I do a lot of waiting on being shown the way, and a lot of trusting. God is definitely teaching me patience. The reality is that I have a lot of advisors and people that I run things by, especially when it comes to things that I feel unqualified to decide about. My kids therapists and special ed teachers are invaluable resources that I call on. I’m not always qualified, but they are. When my children outgrow a particular resource I stay in touch with those people that have come to know us and our circumstances so that I can take advantage of their knowledge and experience. They become my friends. God provides!

As a singleton, I struggle with being patient and waiting for the right answers to become apparent. Some days, when I struggle with a pertinent question regarding one of the kids care, I very timidly make a decision with the best of intentions after having educated myself to the best of my ability, through knowledgeable people and research. Someone once told me that I act bravely when I step forward and advocate for the kids in this way. I don’t feel brave. I’ve resigned myself to acting bravely on their behalf. I may go home and cry after a meeting where I had to tell someone that something wasn’t acceptable for my child, but in the moment I put on a brave face because that is what my child needs me to do. Isn’t that what any parent would do? I don’t have any different power or control than any other parent. I do, however, often feel in those moments that I wish with all my being that there was an equally invested heart that I could pass the torch on to. The burdens can often feel greater than whatever strength I might possess, but God has never failed to provide for a moment of relief when I need it.

On the subject of relief, as the years have gone on, one thing has become absolutely clear to me. Though my circumstances do not always allow for me to physically go away from my house or my children to rejuvenate, it is still absolutely necessary for me to take moments wherein I can rest and refresh myself. I truly believe that our Lord does not want me to burn out. As a special needs parent that is very easy to do, and very dangerous. As a singleton, it carries some serious consequence. Locking myself in the bathroom for five minutes to read a short homily isn’t indulgence, it’s feeding my soul and my mind. I spend the few extra dollars to buy the nice smelling soap, to enjoy my five minute shower so the shower doesn’t seem like one more chore to fit into my day. (It’s easy to go 3 or 4 days without one when the toddler can’t be left unsupervised for even a second.) I’ll find a new book and keep it in the car to read while I wait in the pick-up lines at schools. These are simple things, and at times it feels indulgent or I’ll have this mental conversation about how “you don’t absolutely need that cup of coffee that someone else is making you and those dollars could go somewhere else”. But you know what…it’s really nice to have someone else make you that cup of coffee. They are truly doing me a huge service. In doing these things for myself, I realize that I am also doing my children a service by teaching them several things. One, that I am deserving of time, respect, gentleness, and refreshment (and not necessarily a drink). And two, that sometimes mom needs to be out of sight for a little bit of time to be able to come back and be the advocate that it is necessary to be.

The vocation of caring for special needs children is not lessened in value or dignity because of my singleness. This is something that I struggled with and worried over for quite some time. My children are not illegitimate because I am divorced. They are still loved by God, perhaps in a very special way now. Because I parent without the other parents involvement, at times my children feel abandoned by their father. It is a heartbreaking thing to say out loud, and I cry as I type this. They have questions, they have struggles. It is a huge sorrow to carry. It is something that we must grow through, pray about daily, and run to our Heavenly Father to console us in those times of utter brokenness in spirit. At times I may feel that it is more than I can carry alone, but the truth is that miracles abound in our life on a daily basis. The understanding and insight that my older children have now is astounding at times. I truly believe that by virtue of the Sacraments, I have been given the graces and ability to carry this vocation adequately as a singleton. And not just by receiving the Sacraments myself! I think that the Lord has mercifully showered down grace upon my children through their baptisms and through the Sacraments that they participate in as well. When my children watch me faithfully approach the Sacraments, and speak of them like they are medicine for my broken spirit, they too come to appreciate and desire the graces that come with participating in them. That’s not to say that it is an easy journey, (have a teenager prepping for Confirmation? You may be able to relate!), but it’s hard to argue with reason and Truth. And Love. As long as I speak and act with love and understanding I think that, and I have been assured that, the Lord will not abandon my children in this burden they carry.

Do you know a single parent that is also a special needs parent? Here are a few things that you could do for them that would be of great service to them.

Sit with their child or children so that they can go to Confession.
Are you going to the store, and live close by your special needs parent-friend? Call them up and offer to pick up something from the store for them since you are already going that way.
Have a Mass offered for them. Please do this! There are communities that have enrollment for perpetual Masses.
Invite them over for dinner. They will really appreciate not having to cook! (Ask them to bring french bread or something easy.) Or bring them a frozen meal. There doesn’t have to be a special reason.
Ask to come visit them for a few minutes at their home. Often times special needs parents don’t get to leave the house very often to be social. They are often isolated for long periods of time. It is a great service to visit them even for a few minutes. (Maybe you could let them get that shower in uninterrupted!)
Ask how their kids are doing. Inquire about their child’s needs. Sometimes that can be overwhelming for us to share about and we tend to give shortened/condensed versions of things to not overwhelm people. We can feel like we’re burdening others with our children’s needs sometimes. But if there is one thing in particular that you already know about their child’s disability or needs, ask about how that is going.
Bring them flowers, a new board game, some muffins, a movie and some popcorn… just because!
Talk to their child/children. They are people. They have feelings and like to be acknowledged, too.
And lastly, pray for them! Pray for parents, pray for the children.

A week after Christmas, after months of preparation, my two youngest children received their First Holy Communion. I had always assumed that while welcome at mass, this particular avenue of grace would always be closed to them because of their disabilities. Jude was born with severe cerebral palsy due to an injury at birth and his older sister, Josie, has profound autism. The actions of a kind nun nearing retirement brought them further into the Church and able to participate in Holy Communion.

It is amazing the things that happen by luck, or more fittingly, by divine providence. We attend a variety of masses due to my job as a night shift nurse. We were lucky enough to attend a mass honoring the 50^th anniversary of Sister Judy Jones of the Missionary Servants of the Most Blessed Trinity, an order that was founded at the very parish we attend. It was there that sister met our children and asked a very simple question, “Have they received their First Communion?” When we replied no, her answer was equally simple, “We will need to fix that.” It was there that they started down the road to receiving First Communion.

We were on a time schedule. Sister was due to retire at the end of the year, and return to the motherhouse in Philadelphia. She made our children her top priority in the time she had left in Alabama. While we thought this wasn’t possible due to our children’s inability to participate in “normal” sacramental preparation, we were wrong. Sister had prepared many disabled children for First Holy Communion, allowing them even greater participation in the Mass. Our preparation consisted of a weekly meeting over a period of six months to prepare the children to receive. They learned more about the mass, Josie learned prayers (Jude is non-verbal), and how to receive.

When the day arrived, it was not a typical First Holy Communion. The Church was beautiful with Christmas decorations, not the typical spring flowers. It also happened during a regular Sunday mass. Many of the congregants had watched our children grow and I am certain that mine were not the only tears of joy shed that morning. When they received, it completed something that I felt was undone, something that made my children “normal.” For my children, it allowed them to truly experience our Lord in Communion, perhaps not an experience either one of them will ever be able to truly verbalize, but one that they both felt.

The Lord calls all of us to him, even the littlest, the weakest, and the least able because with him we are strong. He calls others to guide the way for them. We are all called to the feast.

by Melanie Miller

Melanie Miller is a cradle Catholic and registered nurse married 29 years to her husband, Daryl, who converted to the faith 22 years ago. They have seven children, ranging in age from 9 to 28. They currently live in Georgia but attend mass at St. Patrick’s Catholic Church in Phenix City, Alabama.