Can I share with you one of my biggest struggles? It’s patience. Having patience both with my children, but even more so with myself. I see my own faults and inadequacies when I am caring for my children with disabilities, magnified and enhanced. It’s as if I had been watching black and white TV for years. Then someone gave me a color TV. My eyes were opened and I saw colors and details I never noticed before. Perhaps this is a universal struggle for all parents. My kids struggle with Executive Functioning Skills, and require an extra ordinary amount of direction for simple tasks. It requires patience; lots of patience. They can achieve just about anything with patience and direction from me. Where the struggle comes in is most often with myself.
The things that go through my mind at times make me thankful that the interior life is strictly between God and us as individuals. (Unless we feel a need for spiritual direction, which I highly recommend!)
Why can’t you move faster, child?
Why must I tell you time and time again?
We’ve done this same thing everyday, in the same way, since your babyhood, and yet you still can’t do it one single day with out my direction? I am so tired, my child. I just need to rest a bit.
And then I see myself in the mirror of their eyes, in the blank expression, in the tears of frustration. I hear it in their voices when they tell me, “Mom, the alarm went off, it’s time for xyz. You need to come NOW.” I get annoyed with the sameness, the routine, the need for direction. It’s in our nature to expect that at a certain age our child will begin to self direct. But this isn’t the case always, and I know that this patience is a need that may go on for years, and even into adulthood. It becomes a time for me to look back at myself and see where I need to grow in order to love better.
Where is my patience? Is God our Father not infinitely patient with my inadequate self? Surely I can emulate some of his patience towards my sweet children. I rush to the foot of the Cross and beg for Mercy on my own inadequacy. He who gave them to me will lead me, if I rely on His Grace.
The thing that really strikes me in these moments is an experience that I have pretty regularly. Being the sole caregiver can be exhausting at times. About once a month, if I am not caring for myself properly, I will feel my patience start to wane and eventually fly out the window. I become short tempered, and easily irritated. My consideration for a child’s needs turns to feeling that their needs are a burden that I care not to deal with. First I run to the Cross, and then I embrace that child. Literally, embracing that child in the most loving manner I can possibly manage so that they feel loved and cared for, purposefully practicing patience and love in that moment and listening with a heart open to what they need. I call to mind how Mother Teresa would embrace and care for those on the street. She wrote one time about how she often did not feel like she wanted to care for someone, but she was the hands of Jesus in that moment. Sometimes, what I’m feeling is absolute repulsion at having to do a certain act once again, but my practice is to do that action with an over abundance of love and compassion, a smile, and gentlest words. I may even feel tears sting my eyes as I reach out to embrace someone in that moment because I am tired and it’s the last thing I want to be doing. “I’m going to embrace You in my child, Jesus,” is my prayer. I turn my frustration and lack of patience into what I would want for myself in that moment, and shower them in acts of love. And something miraculous happens. My irritation, frustration, and lack of patience is transformed. So often, it seems to magically transform into truly feeling love toward my child and being able to embrace those moments with grace.
He gives me a reprieve when I embrace Him in those moments of struggle.
It’s a practice in accepting Grace, for us to allow our brokenness to bring us closer to Jesus. He works mightily in those moments when we allow our weakness and our own inadequacies to become something as an offering to Him to help us grow and change and become for those around us a tool for his mercy.
Prayer Jesus, work through my weaknesses to help me to serve my children well. Transform my embrace toward my children into the loving kindness that you give to us as our Father so that they may receive from me what you want for them. Help me to be patient both with myself and with them. Amen.
That sounds really weird to me. For a couple reasons really, but mainly because I sometimes wonder if I “qualify.”
My son is on the Autism spectrum, but is pretty high functioning (like what they used to separate out as Aspergers). With only a small interaction with him, you may not notice anything too odd about him, though those who spend more time with him can pretty readily tell he’s not typical. He gets some services from the public school district, and both at home and at his school there are some things we do differently to help him. But then I look at some of my friends who are also “Special Needs Moms.”
Sue (names are made up, but these are all people I know and call my friends) has a son who is severely autistic – his needs affect basically every part of the family’s life and decisions, and he will always need a caretaker of some sort. Karen’s daughter has hydrocephalus and at age five has had about 20 surgeries, including some pretty major brain surgeries, and struggles with many things that a typical five year old would do without even thinking. It’s hard to tell what she will and won’t be able to do in her life, but again her needs affect so much of her family’s day-to-day activities and decisions. Maura’s daughter struggles with severe anxiety – many daily activities like walking into the school building, eating anywhere but at home, and such things absolutely terrify her. The whole family does many things every day to help this daughter handle some of the simplest activities, and Maura is constantly looking for ways to ease her daughter’s anxiety and keep it from negatively affecting her other kids too much. And Jane has adopted or is fostering several children, including some with severe medical needs. She has had to become very comfortable with feeding tubes, specialty wheelchairs, and a number of other specialty devices and activities most of us wouldn’t have the first clue how to handle. One of her young sons (I think he was about five) recently passed away due to his medical difficulties.
Me? I have to deal with an occasional meeting with teachers and other folks caring for my son. I have to learn to adjust my discipline and teaching to suit what works best for him, and remind him to do things like responding to a friend who says hi. My other kids sometimes have to wait a couple minutes while we deal with his unusual behavior. Is it difficult? Yes, at times, but I’m sure he’ll be able to be independent as an adult, I don’t deal with much in the way of medical interventions (counseling and such occasionally, but not anything more), and I know his life is not at risk from his special needs.
Calling Sue, Karen, Maura, and Jane Special Needs Moms is a little bit of a “well duh!” Putting myself in the same category of Special Needs Mom almost makes me feel like an impostor, or like a kid dressing up in her mom’s clothes.
On the other hand, in my head I know I shouldn’t compare myself or my kid to others. And on the third hand (lol 🙂 ), I’m not a fan of labeling in general, or at least “embracing” labels as a way of defining yourself. And, I mean, it’s more than a little ridiculous to feel inadequate somehow because you’re not in as tough a situation as someone else. But knowing something and feeling it, whether you use the label or not, are very different matters. And, frankly, labels can be helpful in finding the help and resources you need.
So, am I the only one who feels this way? Do you? Or are you on the other end of it, and wish you weren’t reminded of your family’s special needs so often? How do you deal with it, or think about it??
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.
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 absolutelyneed 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.
For a while, it has bugged me when a pregnant woman, when asked if she wanted a boy or girl, responded “I don’t care, as long as it’s healthy.” Because I had seen couples welcome babies who were definitely not “healthy”, but of course they still loved their child with all their hearts. So in my self-righteousness, I looked down on those who answered “as long as it’s healthy”. Until I had been a mother myself for several years. My first two children had both been born healthy and “perfect”, and were even relatively easy babies. But then as my son grew, we saw signs of problems. He had a speech delay, which we found was due to a hearing issue (later corrected with ear tubes), but there were other issues which seemed to point towards something more. Over time, it became clear that he is on the Autism spectrum. He’s pretty high-functioning, so while it is sometimes difficult, our lives are still pretty normal. And for a while, this actually increased my self-righteousness, since I had a child who while physically healthy, was not your typically “perfect, healthy child,” yet of course I loved him! I must be so much better than those people who replied that they only wanted a healthy child.
But then I realized that I was not all sunshine and happiness when thinking about my son. I frequently felt sad, stressed, guilty, worried, frustrated, overwhelmed, and so much more. And somehow humility struck me, because I found myself grieving for the loss of some of what I had imagined for my child. I realized I was sad that he was already having great difficulty learning to read and having trouble with his classmates because of his difficulty in social interactions. And I was sad because I knew those difficulties would continue, and others would come. And I realized without even being aware of it that I had imagined my children would be healthy, normal kids and grow into healthy, normal adults. While I was feeling superior to those who voiced the hope for a healthy child, without realizing it I had simply assumed that my own children would be healthy. And it hurt to give up that assumption, to change my image of what my kids would be as teens and young adults and parents themselves. I had to realize that not only would they all face the typical challenges of life, but my son would also face special challenges. And my husband and I would face special challenges in raising him.
And that kinda sucks.
I don’t want to spend time searching for ways to help him navigate a world that sometimes doesn’t make sense to him. I don’t want to deal with Special Ed providers at his school, or with the additional parent-teacher meetings needed to keep track of where he needs extra help, or with the extra time at home helping him. I don’t like having conversations with him where I have to explain basic social reactions when he just doesn’t understand why his classmates react a certain way. I don’t want to be a “special needs mom,” but I am. I wouldn’t choose any of those things, but I do them because I know he needs them, and I’m his mother. I have friends who deal with much greater issues with their children, and I’m willing to bet they don’t want to be a “special needs mom” either. I think any mother would prefer that her child not have to face the big or small challenges that come with having special needs. A mother naturally wants to make the road smooth and easy for her children, to watch them grow and succeed rather than stumble and struggle.
So I’m sad sometimes. I grieve the loss of the image of a normal, healthy life for my son, and I grieve the fact that his extra needs make my job harder. While I certainly love him no less, part of my mind says “I wish he were healthy,” “I wish we didn’t have to fight to get closer to normal,” “this stuff is a pain in the….uh….rear.” And that’s okay. While I still don’t like it, I don’t judge them so harshly when new parents say “as long as the baby is healthy.” And I don’t come down so hard on myself when I am sad that we have to deal with this. It is a loss. A loss of some of my hopes for my child and myself, a loss of our time and effort and energy, a loss of the ability to share my time and attention more evenly among my children. I’m allowed to grieve for the difficulties my son will face. And so are you.
I’d love to hear how having a child with special needs has impacted your family. Have you grieved the loss it includes, as I have found myself doing? Have you felt guilty about that sadness, as I frequently do? Share your stories in the comments section.
When I first heard we were doing a special needs series, I was very happy to contribute and had many ideas flowing. There are so many areas in our faith and faith lives that we can use a voice and guidance. However, the very day this happened was the day my daughter was discharged from the hospital after a month long stay. So today, I will share with you her story and get this series started with some very amazing things that happened.
December 27 started like any other day for our family. It was my husband’s birthday and we had a lot of family plans including cake and presents. Halfway through opening presents, Meagan came over to me, put her hands on my leg, and said, “Mommy, my head….” The next thing we knew, she was on the ground out of it – her head bulging, and her eyes glassy. Shortly after she was pressure vomiting and turning color, and I knew we had to get her to the hospital as soon as possible.
For those that don’t know our story, Meagan, my fifth of six daughters, was born with congenital hydrocephalus (fluid on the brain). She was shunted at birth, and since then has many other diagnoses that we have dealt with over her 5 1/2 years including epilepsy, chiari malformation, failure to thrive, developmental delay, and many other difficulties. She has had 19 brain surgeries and many other hospital stays and procedures, and daily life with her is nothing short of adventure. I thought we had seen it all with her, as several of her stays and surgeries had been quite serious – until this last time.
By the time we got Meagan to the hospital, she was grey and not breathing well. The respiratory team tried to help her as best as possible, but her body wasn’t responding. She then started seizing and going downhill. Her carbon dioxide was through the roof and she wasn’t able to breathe on her own. They had to intubate. Unfortunately, she was still pressure vomiting from her shunt failure, so because of what can only be described as the perfect storm, she aspirated. The neurosurgeon took her to surgery and externalized her shunt to relieve the pressure, but the spiral was already too deep. Meagan was not able to breathe on her own and was a very sick little girl. The week following in the PICU, she was fighting aspiration pneumonia and then contracted RSV on top of it all the week after. It was a snowball effect, and any medical mama knows its the secondary infections that worry us most. It sounds crazy to think I was ‘comfortable’ with brain surgery, but that is Meagan’s life. Once aspiration pneumonia and RSV piled on, I was very worried. It was probably the first time in her many surgeries and hospital stays I was concerned she wouldn’t recover.
In times like these, anyone of faith typically turns to that faith as a comfort. But there is just an intensity that is added when you are a parent to a special child. Everyday is such a struggle, that the yearning for them to get well and fight another fight is strong. You know every time they have met challenges, the walls they already fight to break down, and many other hard times they have encountered – so when they are really down, it is a beyond desperate situation. I knew this time was different – that trusted “mom gut” was very apprehensive and not feeling good about Meagan’s situation. So I turned to the only place I knew had more control than I did – my Catholic faith and God who had been with me since before Meagan was born.
Probably towards the middle of Meagan’s precarious stay, I was on pins and needles. Those who know me well could read between the lines of my updates – this was serious and she was really bad. Meagan had been rushed from birth for her first brain surgery, and was baptized and confirmed at birth. So she already had so many graces to help her along, but this time she would need any help she could get. In hindsight, I see that God was showing me signs along the way. At the time I didn’t realize what they were, but now I see He was offering me comfort and hope.
The first chance I got at Children’s, I had a priest come and give Meagan Anointing of the sick. Not too long after, I had a friend offer a St. Gerard cloth to use to pray with Megs. Our parish priest also came and gave her Anointing of the Sick just a week later. And a family member had a priest say Mass for Meagan at Medjugorje when they heard of her precarious state.
When Meagan was not recovering well, a friend of mine had asked if I had any way to get her some Lourdes water. I told her no, I didn’t. It was a great idea, but I didn’t have a way to get her any at that time. The very next day another friend contacted me asking if she could come visit. I said sure and she made her way to the hospital. We sat down and she took out a package. The first thing she took out was a very sacred relic of St. Theresa that another friend had sent her to be brought to our room for Meagan. Meagan’s middle name is Theresa. The second thing she took out saying to me, “I’m not sure if you can use this, but I thought Meagan could really use it right now and I want you to have it.” I took the bottle from her and then saw it was Lourdes water. I got goosebumps. There was zero way that my two friends knew each other and zero way that this friend knew we had discussed Lourdes water for Meagan. It was truly a God moment in a very dark time.
Not too long after, I was talking with one of my very close friends. She had mentioned St. Joseph oil that would be good for Meagan, but she wasn’t sure where it had gone. It had been her mothers, which was extra special because she prayed a lot for Meagan, but a lot had been happening and she was sure it had been misplaced. The next day she called me and said she had opened a drawer and the bottle of oil was there. She said she would place it in the mail and send it to Meagan. Around the same time, several families organized a local prayer vigil for Megs and brought together people from all aspects of our life at a local venue to pray. The night ended up being very stormy with rain and thunder and lightning all over the place – yet, they still showed up and it was an extremely moving service.
Meagan had a very tough time with the RSV. She was already struggling neurologically and was fighting the aspiration. But the RSV on top of it all was really bad. She would cough and cough and cough and she would struggle immensely. Her oxygen would drop and it would be a challenge for the nurses, doctors and respiratory therapists to bring her back to a normal saturation. Meagan was still intubated at this time, so they would suction her many times, and all we could do was sit there and hold her hand and talk her through it. She wasn’t awake, but I knew that somewhere deep down, she had to hear me.
One night, Meagan was worse than ever. The coughing fits were constant and she was really struggling. The doctors and therapists were amazing, but she was really having a bad night. I took some of the Lourdes water and rubbed it on her chest praying for relief for her. Soon, her oxygen recovered to a good saturation and she came out of the coughing fit. The therapists were able to suction the sticky and thick phlegm from her lungs for the first time and she seemed to be more comfortable. It was the first time I talked to Meagan and actually saw response from her in her face. I couldn’t believe it because we had not seen much improvement at all before this. For 3 weeks I had waited for signs of my daughter, and that night I got it.
That morning after her terrible night and the storms during the prayer vigil, we had several people text us with pictures of clouds opening with sunlight shining through, and rainbows covering the sky. It was more symbolism that she had turned the corner and was going to be okay. She had overcome several complications, two illnesses, a shunt failure, seizures, and her 19th brain surgery and was once again coming home. After over a month of uncertainty, I was finally given the signs that she was on her way to recovery. Looking back on this last stay with her, I think it was a big reminder of how much we don’t control with Meagan’s life. I think that is something that is hard for special needs parents in general, and a big reason I am thankful for my faith and the signs we were given along the way.
As a special needs parent, you are always in fight mode. Even when your child is doing well, you are preparing, gathering, and learning. You are always on alert and always looking ahead to the next challenge that lies ahead. Are Meagan’s eyes glassy because she’s tired or about to seize? Is Meagan tired because of normal growth, or because her shunt is failing? If Meagan gets sick again, is she going to be able to fight it at home, or will she be back in the hospital fighting for her life? The biggest struggle I face as Meagan’s mom is recognizing and accepting that I don’t control everything in her life. I can be her best advocate, physically and spiritually, and still, I cannot control what ultimately happens.
As a Catholic mom of a very complicated daughter, our faith has helped me better understand the lack of control we have in lives of our special kids. The faith grounds me when I feel lost, it pushes me when I feel challenged, and it comforts me when we are in times of need. For our family, it’s a great source of strength – and I am so happy that this series is started to help guide us through this journey we are on together. As special needs parents, we know that there are just aspects of our lives that no one else gets except other special needs parents – and this is also true when navigating areas of our faith. We have encountered many challenges and even road blocks along the way, and those times have sparked questions and discussions that I think is important we have as Catholic parents.
As tough as those times have been, however, I do know one thing – it has made us stronger to hold on to our faith because it is times like Meagan’s most recent stay where you are sitting in a dark hospital room, ice cold as they try to stabilize your child, the only sounds around the beeps of her machines and the bustling of the nurses and doctors trying to help her the best they can. All you can do is sit there and think, “Not after all she’s been through.. this cannot be …” But luckily for us, we have a light in the darkness – we have a string of hope in very hopeless times – our Catholic faith.
I’m very excited to go on this journey with you, and discuss ways we can make our everyday experiences even better for those of us who have been privileged enough to have a child with extra challenges. Meagan is a gift. Our faith is a gift … sometimes she sees things that I don’t see … and makes other things come together that we would have never thought possible. We now have the opportunity to share with each other how we can make our faith experience better than ever with our special kids, and from there show the world how much they can teach us and bring us closer to God.