As I'm moving through all the preparations for today, tonight, and tomorrow, I am carrying each and every one of you in my thoughts, heart, and prayers to be kind to yourself. After finishing up Elisabeth's shower and dressing her just now, I prayed to get rid of this weight of responsibility I feel for her. I prayed to be released from all the expectations and guilt of never doing enough for her. I prayed for herculean strength to carry on because after doing this for 25 years, there are days I am exhausted, depreciated, and defeated. And our loved ones, abled and disabled, deserve their dignity and quality life. They deserve the very best from each and every single one of us. Their needs, their dignity, should not be something that weighs us down but lifts us up.
Children are a gift to the world and should be treated as such.
Tuesday, December 24, 2019
Thursday, December 19, 2019
Rock'n' The Waiting Game, Rooms with a View, and Resiliency
Of all the issues Elisabeth is facing, one thing very disabling for her is the cyclic vomiting. Today, she is missing her holiday party with her Metzcor family because of "it." The signs are yawning, gagging, coughing, and she sweats profusely. It happens spontaneously. It can happen in a car, it can happen near or far.
Her dad knew the minute she was having another episode when he brought coffee in the room for me this morning. He could hear her bringing up whatever she had left in her stomach and went in to begin taking care of her. I stayed in bed sipping coffee and stared at the dog who was letting me know it was time for his morning walk.
Fortunately, her stomach is empty, this time, so the clean up is minimal and I have it down to an art form layering the pads on her bed and around her neck. She's sleeping peacefully now with her little "Mona Lisa" smile after cleaning her bed, showering her up, and wrapping her to rock in the chair to comfort her.
As I am holding Elisabeth's petit adult body and smelling her fresh shower scent, my eyes wander over to my windows filled up with sleepy trees, snow, and sunlight filtering though the remaining needles on my dawn redwoods. It's a lovely view out my window. It has a healing effect on me..
I am part of nature and this creation and I need to have that bond with my creator -- where it starts and when it ends. And for all my hopes, dreams, and responsibilities at hand, I draw my strength and resiliency through my windows.
So.
I begin again. I count my blessings and new beginnings each day while rocking Elisabeth in our favorite chair as she begins working through her own creation and recovery.
Her dad knew the minute she was having another episode when he brought coffee in the room for me this morning. He could hear her bringing up whatever she had left in her stomach and went in to begin taking care of her. I stayed in bed sipping coffee and stared at the dog who was letting me know it was time for his morning walk.
Fortunately, her stomach is empty, this time, so the clean up is minimal and I have it down to an art form layering the pads on her bed and around her neck. She's sleeping peacefully now with her little "Mona Lisa" smile after cleaning her bed, showering her up, and wrapping her to rock in the chair to comfort her.
As I am holding Elisabeth's petit adult body and smelling her fresh shower scent, my eyes wander over to my windows filled up with sleepy trees, snow, and sunlight filtering though the remaining needles on my dawn redwoods. It's a lovely view out my window. It has a healing effect on me..
I am part of nature and this creation and I need to have that bond with my creator -- where it starts and when it ends. And for all my hopes, dreams, and responsibilities at hand, I draw my strength and resiliency through my windows.
So.
I begin again. I count my blessings and new beginnings each day while rocking Elisabeth in our favorite chair as she begins working through her own creation and recovery.
Sunday, December 15, 2019
Second Verse, Same As The First...
Today, Elisabeth and I met at church a women who was 51 years old. She reminded me of Elisabeth, just a little. She at least could use her spastic fist and elbow to communicate by pointing to a word on her tray. And she had a caregiver who didn't look much older than her, but I was later informed that she was the mother. It threw me off. Way off.
When Elisabeth is 51, I will be 87 so I had a hard time convincing myself that she was the mother and she was most likely an aid. But, it certainly got my gears going thinking about Elisabeth's future. And what it looks like when she's my age. Will I be around? This reminded me about a story my friend was telling me about her young daughter and the caregiving concerns around their sibling with special needs. Needs that require 24/7 care like Elisabeth's. The story goes like this:
It really puts Elisabeth's future into an interesting perspective over how much planning is still required. Most families have the same back up plan. In case. A sibling (or two) will take turns. Not much of a plan, but we're lucky we can get through the day as it is.
We've talked about a place like St. Joseph's where she would receive the quality care for which they are known. Marjorie P. Lee is another option because Graeter's ice cream is nearby and everyone loves to visit Hyde Park. So, most likely her family and friends would drop by to take her out.
It's always a mystery what her life will look like because everything can change so quickly. No matter what we plan can all change. This has been the trend. Our experience. Care facilities for adults like Elisabeth lose funding and they shut down or change ownership. New places start from scratch and eventually, they too, shut down because they are not making a profit. Or, they are forced to make a profit sacrificing the quality care of the residents and hiring employees at low wages.
Elisabeth's new friend and her mother have an interesting story about their journey together, I'm sure. I learned what Elisabeth and our new friend had in common -- Redwood Therapy in Fort Mitchell. Although Elisabeth's new friend attended there as an adult when Elisabeth was just beginning in the infant care area.
But what still threw me off was realizing how old I'll be when Elisabeth is her age. A caregiving reality sank in for me after meeting her and I am not sure if I'm ready to face it. Am I even worthy to be her caregiver with all the planning I still have to continue doing?
It's a circle game. Like Joni's song, we're on a carousel through time. We can't look back, we can only look behind from where we came and go 'round and 'round and 'round in the circle game.
When Elisabeth is 51, I will be 87 so I had a hard time convincing myself that she was the mother and she was most likely an aid. But, it certainly got my gears going thinking about Elisabeth's future. And what it looks like when she's my age. Will I be around? This reminded me about a story my friend was telling me about her young daughter and the caregiving concerns around their sibling with special needs. Needs that require 24/7 care like Elisabeth's. The story goes like this:
When Sarah was about 8 Bill and I were going out of town for a bit. She asked who would take care of Robby (he is 2 years older with many disabilities) when we are gone. I told her grandparents. She said “no I mean when you are gone”. I said I hoped that maybe her and her sister could take turns. Days later she said she wasn’t sure how that would work since she wanted to work at the zoo and Robby would open the doors and let all the animals out. I laughed and cried.
It really puts Elisabeth's future into an interesting perspective over how much planning is still required. Most families have the same back up plan. In case. A sibling (or two) will take turns. Not much of a plan, but we're lucky we can get through the day as it is.
We've talked about a place like St. Joseph's where she would receive the quality care for which they are known. Marjorie P. Lee is another option because Graeter's ice cream is nearby and everyone loves to visit Hyde Park. So, most likely her family and friends would drop by to take her out.
It's always a mystery what her life will look like because everything can change so quickly. No matter what we plan can all change. This has been the trend. Our experience. Care facilities for adults like Elisabeth lose funding and they shut down or change ownership. New places start from scratch and eventually, they too, shut down because they are not making a profit. Or, they are forced to make a profit sacrificing the quality care of the residents and hiring employees at low wages.
Elisabeth's new friend and her mother have an interesting story about their journey together, I'm sure. I learned what Elisabeth and our new friend had in common -- Redwood Therapy in Fort Mitchell. Although Elisabeth's new friend attended there as an adult when Elisabeth was just beginning in the infant care area.
But what still threw me off was realizing how old I'll be when Elisabeth is her age. A caregiving reality sank in for me after meeting her and I am not sure if I'm ready to face it. Am I even worthy to be her caregiver with all the planning I still have to continue doing?
It's a circle game. Like Joni's song, we're on a carousel through time. We can't look back, we can only look behind from where we came and go 'round and 'round and 'round in the circle game.
Friday, November 29, 2019
Thanksgiving...
Today, while I was holding Elisabeth in the rocking chair, with our cheeks pressed against each other in our usual turntaking humming song, I began longing for that child I dreamed about 26 years ago. That child who was floating somewhere in a primative sea of genetic scramble. As I feel her body occupying that warm embrace that only a mother can provide while also being weighed down, a child without DDX3X genetic coding, ACC and polymicroplegia labeling begins telling me how much she loves me, her family, and her life. She is telling me how much she loves her dad's homemade ice cream and pumpkin pie after lunch. She is telling me that the universe is calling out to all of us in a song of praise and Thanksgiving to anyone open to listen.
Wednesday, October 23, 2019
Told You So...
The wonderful news for families who have children diagnosed with Agenesis of the Corpus Callosum, cortical visual impairments, cerebral palsy, developmental delays, polymicrogyria, and autism right is right HERE in this article. The back story here is that Elisabeth's DNA and many of her DDX3X sisters and brothers have been used in this research after we gave the lab permission 3 years ago so we are thrilled to hear that they finally isolated the location.
Friday, October 4, 2019
Depression in Parents with Children and Adults with Special Needs
Parental depression is a common condition, and for parents of children with developmental disabilities—both moms and dads—it is even more likely that they will report symptoms of depression than parents of children without disabilities. As providers who care for youth with disabilities, we know how important it is to address parental symptoms of depression in order to support healthy growth and development for children. If unrecognized and/or untreated, parental depression can have a huge impact on how the family functions, and on how a parent and child are able to bond.
Why are rates of depressive symptoms higher among parents of children with special needs?
Although we know that there is an association between depressive symptoms and having a child with a developmental disability, we still have much to learn in order to provide effective and responsive supports to families.
Having a child with a developmental disability can be stressful, even while parents describe it as being rewarding. Some developmental diagnoses are considered life-long chronic conditions that may require ongoing parental support beyond the age that other children reach independence. Children with developmental disabilities may also have one or more significant medical problems that require intensive and ongoing care. Furthermore, many of the therapies recommended for young children depend on parents to implement strategies at home throughout the day, presenting additional demands for parents. Parental depression can interfere with the correct implementation of these interventions, and can even counteract the effects of home-based interventions.
Other factors are at work as well. Financial stressors tend to be higher among parents of children with developmental disabilities, which may negatively impact parents’ mood and well-being. Characteristics of the child, including behavioral difficulties such as aggression, can contribute to the risk of parental depression. And many developmental conditions can affect a child’s ability to sleep independently throughout the night, contributing to parents’ sleep deprivation and exacerbating depressive symptoms.
While many parents of children with a disability experience stigma and frustration with services, the nuances of the parent’s experience can vary greatly across diagnoses. For example, many families of children with autism spectrum disorder (ASD) report feeling isolated, and describe their reaction to a new diagnosis of ASD as a grieving process similar to having lost a child, which can increase depressive symptoms. Conversely, having positive parent-child relationships can protect against depression.
Symptoms of parental depression and a child’s developmental and behavioral problems are likely closely intertwined. Having severe depressive symptoms can affect a parent’s ability to respond to a young child’s needs, putting them at risk for physical and emotional health issues and poor social skills later in life. This highlights the need for providers of children with developmental and behavioral disabilities to assess and support parents’ mental health needs as well.
Recent research results
A recent study at Children’s Hospital of Philadelphia (CHOP)/Penn Nursing surveyed 245 mothers about their depressive symptoms, family functioning (the ability of a family to meet the needs of all family members), self-efficacy (a parent’s feeling of confidence in caring for their child) and child’s behavior. More mothers of children with ASD screened positive for depression compared to moms of children with Down syndrome (Trisomy 21) and children with typical development (24 percent vs. 12 percent vs. 0 percent). Furthermore, 37 percent of moms of children with ASD and 20 percent of moms of children with Down syndrome reported a history of a mental health diagnosis (e.g. depression, anxiety, bipolar) before giving birth to their child. Moms of children with ASD were more likely to report a personal and family history of depression than the other groups.
This research is ongoing, but parenting self-efficacy and family functioning appear to be related to a child’s diagnosis, as well as to symptoms of maternal depression. This suggests that in order to improve parental depression, we need to support parents’ self-efficacy and the family dynamics as a whole.
How can we support families of children with disabilities?
At PolicyLab, we’re looking closely at ways to identify and address parents’ physical, social and mental health needs in order to improve children’s health and well-being. Parental depression goes largely unidentified and untreated, and supports for parents of children with special needs remain limited. Clinicians and pediatric health systems should implement parental depression screening programs in clinical settings that treat children with disabilities and provide resources when symptoms of depression are identified.
Finally, helping parents feel more capable and effective in caring for their child with special needs may reduce the risk of depression. A simple word of acknowledgement and encouragement can make a huge difference for a struggling parent. Enhancing access to increased social supports, through respite services or support groups, may help parents manage their own stress and feelings of isolation. One mom of a child with Down syndrome and ASD described her social network to us as being “worth its weight in gold.” Every family caring for a child with a disability should experience that same sense of support.
Stefanie Zavodny Jackson, MS, RN, is a nurse and PhD candidate at the University of Pennsylvania School of Nursing. She is currently working on her doctoral dissertation, which is a mixed-methods study focused on identifying depression symptoms in mothers of children with autism spectrum disorder, trisomy 21 and typical development, and on characterizing modifiable risk factors for maternal depression in these populations.Depression in Parents with Children and Adults with Special Needshttps://policylab.chop.edu/blog/depression-parents-children-developmental-disabilities-what-do-we-know-and-what-can-we-do
Monday, August 26, 2019
Wednesday, August 14, 2019
Life Equivalencies and Invisibility Cloaks
I haven't written or added much to this blog in a few years, actually. It all started when I realized that while caregiving for Elisabeth and all her needs, the world was changing in regard to healthcare cost, living expenses, and I didn't keep up. When ACA went into effect, for example, things were looking great. Our premiums decreased significantly from $3,000+ monthly to half of that which was a huge relief for my self-employed husband because we were only drawing one income, had two children entering college, and we were caregiving for one daughter at home.
Eight years and counting, the premiums are almost the same, but now we pay for office visits, pharmacy, surgery, etc. And oddly, we have a high deductible for being healthy. So basically our healthcare is only as good as the next catastrophe that awaits us. Cancer, I hope not. Alzheimer's? Please God. No. It's typical for boomers like me, I think, to stay ahead of the curve balls life throws at you. So here I am, lifting the invisibility cloak of caregiving and looking for jobs outside the home offering quality healthcare to hold us over until Mike is ready to sell his business and retire. The challenge for me is finding new and challenging employment opportunities, caregiver or not.
Fortunately, for the time being, I'm working part-time as a sacristan at a beautiful and an architecturally significant post modern chapel on a college campus were I continue observing the uncanny similarities in attitudes, perceptions, and motivation about why people attend museums and churches.
It's a lot like working for the museum where I pursued a career pathway studying why people visit museums in general. People, you see, have similar attitudes about why they attend museums and churches. They want to be visible, validated, and celebrate their humanity. Both church and museum are community repositories to share knowledge and fellowship. People go to museums and churches because they are passionate, social, curious, and want to live their life to the fullest. And people young and old need validation.
Even though it's a part-time job, it releases me from my life as a caregiver while Elisabeth attends an adult daycare program. Thank God. She is safe. And a great weight has been lifted.
A sacristan, in case you don't know, is responsible for the inventory and collection of sacred and secular materials used for mass, sacraments, and faith formation. Having extra time, I can do other things to make the chapel more homey for both the parishioners and students. Today for example, as I was updating the student mass schedule handout and making welcome signs for the doors, I felt a sense of purpose. I felt valued. Appreciated. Challenged. I felt that inner peace. A feeling of hope that no matter what happens, we'll be fine.
It's only until I'm driving home, I start thinking about my future and how absolutely out-of- control it is for me losing my financial independence. Its not fair for one spouse to bare the sole responsibility of keeping a family afloat especially in this day and age.
Recently, I've been struggling with mortality issues, too, because I'm in a higher age bracket and feeling very particular about how I want to spend my time. So I use the length of time of living in my homes -- nineteen years in my current home and 11 years in the previous home-- to calculate how much time I have to live my life while also preparing for Elisabeth's life without me.
Lots of wonderful things happened in the last 19 years. And 11 years before that in our first home where Elisabeth's story begins. If I'm really lucky, I'll have the combined lifetime of living in both houses and all the joy the last 30 years brought me!
It would be great, too, to be lucky and remain in good health. And not worry so much. My point, I guess, is that I want to enjoy my life and take on a new career outside the home but I'm feeling the challenge of marketing myself, lifting my invisibility cloak, and letting the world know, I am ready. Are you ready for me, world?
What I want most is quality healthcare to maintain a quality life, but right now, our healthcare insurance from the exchange is zapping our lifestyle and depleting our resources due to the high premiums placing families like mine under a different cloak of invisibility. A cloak that is hiding the fact that great health insurance benefits and low premiums came at the expense of people like me who are paying higher premiums and getting no benefits.
Eight years and counting, the premiums are almost the same, but now we pay for office visits, pharmacy, surgery, etc. And oddly, we have a high deductible for being healthy. So basically our healthcare is only as good as the next catastrophe that awaits us. Cancer, I hope not. Alzheimer's? Please God. No. It's typical for boomers like me, I think, to stay ahead of the curve balls life throws at you. So here I am, lifting the invisibility cloak of caregiving and looking for jobs outside the home offering quality healthcare to hold us over until Mike is ready to sell his business and retire. The challenge for me is finding new and challenging employment opportunities, caregiver or not.
Fortunately, for the time being, I'm working part-time as a sacristan at a beautiful and an architecturally significant post modern chapel on a college campus were I continue observing the uncanny similarities in attitudes, perceptions, and motivation about why people attend museums and churches.
It's a lot like working for the museum where I pursued a career pathway studying why people visit museums in general. People, you see, have similar attitudes about why they attend museums and churches. They want to be visible, validated, and celebrate their humanity. Both church and museum are community repositories to share knowledge and fellowship. People go to museums and churches because they are passionate, social, curious, and want to live their life to the fullest. And people young and old need validation.
Even though it's a part-time job, it releases me from my life as a caregiver while Elisabeth attends an adult daycare program. Thank God. She is safe. And a great weight has been lifted.
A sacristan, in case you don't know, is responsible for the inventory and collection of sacred and secular materials used for mass, sacraments, and faith formation. Having extra time, I can do other things to make the chapel more homey for both the parishioners and students. Today for example, as I was updating the student mass schedule handout and making welcome signs for the doors, I felt a sense of purpose. I felt valued. Appreciated. Challenged. I felt that inner peace. A feeling of hope that no matter what happens, we'll be fine.
It's only until I'm driving home, I start thinking about my future and how absolutely out-of- control it is for me losing my financial independence. Its not fair for one spouse to bare the sole responsibility of keeping a family afloat especially in this day and age.
Recently, I've been struggling with mortality issues, too, because I'm in a higher age bracket and feeling very particular about how I want to spend my time. So I use the length of time of living in my homes -- nineteen years in my current home and 11 years in the previous home-- to calculate how much time I have to live my life while also preparing for Elisabeth's life without me.
Lots of wonderful things happened in the last 19 years. And 11 years before that in our first home where Elisabeth's story begins. If I'm really lucky, I'll have the combined lifetime of living in both houses and all the joy the last 30 years brought me!
It would be great, too, to be lucky and remain in good health. And not worry so much. My point, I guess, is that I want to enjoy my life and take on a new career outside the home but I'm feeling the challenge of marketing myself, lifting my invisibility cloak, and letting the world know, I am ready. Are you ready for me, world?
What I want most is quality healthcare to maintain a quality life, but right now, our healthcare insurance from the exchange is zapping our lifestyle and depleting our resources due to the high premiums placing families like mine under a different cloak of invisibility. A cloak that is hiding the fact that great health insurance benefits and low premiums came at the expense of people like me who are paying higher premiums and getting no benefits.
Monday, June 17, 2019
Written by Lydia's Mom Moving Mountains
I knew he was kind, patient, nurturing, driven, intelligent, funny, and dreamy as hell, but I never could have expected what an incredible dad he would be. I met him three weeks into my freshman year of college and after we spoke that first time and I learned that he was studying early childhood education as well, I think my heart just knew he was it for me. I had just turned 18 years old.
He lost his mother, his best friend, at the young age of 20-unexpectedly. She was only in her early forties. I read her cards and notes to him from those beginning college years after she was gone, with his permission of course. They said things on how to treat me, talk to me, how to pick out gifts for my birthday and holidays. She was such a sweet woman. I think about how proud she would be of her son. If she only knew what was in store for him!! I thank his mother and father for bringing this incredible man into the world, and I thank God for connecting our paths. I married him by the way.;)
No one thinks they will have a child with health concerns, or major developmental delays. It’s just not in your parenthood fantasies growing up, or when trying to begin a family. You inhale quickly at those parts of the “babies born with special needs” in the What to Expect When Expecting books, and turn the pages quickly because “that won’t happen to you.” No. No. You fantasize about your child having your love of music and his athletic ability. You’ll work so hard with them on their schoolwork. You can’t wait to raise them with good values and morals. You’ll be diligent in raising a kind child who loves God and helps others to see Him. Your child will make a difference in this big old, often times ugly and scary world. Your child will be the picture of health.
And then you are a parent and you have a child whom the world would not refer to as “a picture of health.” No, something is wrong with her. She’ll be measured constantly in every way: physically, mentally, developmentally, and socially. You may wonder where you went wrong in your role.
In my opinion, the fathers of our children with special needs do not get enough recognition. At least, my hubby deserves a shout out on this Father’s Day, in this space. You guys, he is a reserved, behind the scenes, stoic, rock of a person-the complete opposite of me. Thank heavens!
So daddies. I see you. I see you holding up your wives when they are completely drained and “can’t do this anymore”. I see you hiding your grief, and your crushed dreams because you need your wife to be ok, and currently her tears are soaking your shirt because your daughter can’t do-may never do-what those girls are doing. I see you working to provide and at the same time not wanting to miss one doctor or therapy appointment, one meeting about your child. I see you on the phone working to get hospital bills lowered, even if by a few bucks because anything helps. I see you going over your finances again and again because there are just so many extra costs and then…there is the possibility that your child will always need you to provide for her. I see you jumping in to speak to your child’s therapist, doctor, and teacher about their goals and progression after you’ve had a ten-hour workday yourself. I see you jump in to home routines and playtime. You are the hero. You.never.stop.
I pray you have an outlet. Do you have a “tribe” like so many of us moms do where you can share your thoughts? I know that us moms can steal the spotlight of articles, blogs, mentor programs and support groups for parents that have children with special needs. So much “self care” care discussion in our circles. Do you get that? You matter. Your health and happiness matter.
In our tiny corner of the world, no one does it better than you, Erik. First, a father to our beautiful mystery girl, our Lydia, and then a daddy to triplets-all within four years while building a career a, marriage and a home. Stop being a show off, ok? Happy Father’s Day to you, E! You’re the love of my life.
Happy Father’s Day to all of the amazing dads out there! Happy Father’s day to all of you who are on a parenthood journey that is much different than you ever expected. You’ve got this!! Happy Father’s Day to all the dads who have angels in heaven; you have been on my heart.
And in conclusion, remember those dreams about parenthood?
She loves music and soccer. She is rocking her education, even if it may look a little different. She knows right from wrong, is kind and loves God. She has helped us witness God even more in our daily life, and she is making a difference in this big old, often times ugly and scary world. Thank you for being my partner in that, E.
He lost his mother, his best friend, at the young age of 20-unexpectedly. She was only in her early forties. I read her cards and notes to him from those beginning college years after she was gone, with his permission of course. They said things on how to treat me, talk to me, how to pick out gifts for my birthday and holidays. She was such a sweet woman. I think about how proud she would be of her son. If she only knew what was in store for him!! I thank his mother and father for bringing this incredible man into the world, and I thank God for connecting our paths. I married him by the way.;)
No one thinks they will have a child with health concerns, or major developmental delays. It’s just not in your parenthood fantasies growing up, or when trying to begin a family. You inhale quickly at those parts of the “babies born with special needs” in the What to Expect When Expecting books, and turn the pages quickly because “that won’t happen to you.” No. No. You fantasize about your child having your love of music and his athletic ability. You’ll work so hard with them on their schoolwork. You can’t wait to raise them with good values and morals. You’ll be diligent in raising a kind child who loves God and helps others to see Him. Your child will make a difference in this big old, often times ugly and scary world. Your child will be the picture of health.
And then you are a parent and you have a child whom the world would not refer to as “a picture of health.” No, something is wrong with her. She’ll be measured constantly in every way: physically, mentally, developmentally, and socially. You may wonder where you went wrong in your role.
In my opinion, the fathers of our children with special needs do not get enough recognition. At least, my hubby deserves a shout out on this Father’s Day, in this space. You guys, he is a reserved, behind the scenes, stoic, rock of a person-the complete opposite of me. Thank heavens!
So daddies. I see you. I see you holding up your wives when they are completely drained and “can’t do this anymore”. I see you hiding your grief, and your crushed dreams because you need your wife to be ok, and currently her tears are soaking your shirt because your daughter can’t do-may never do-what those girls are doing. I see you working to provide and at the same time not wanting to miss one doctor or therapy appointment, one meeting about your child. I see you on the phone working to get hospital bills lowered, even if by a few bucks because anything helps. I see you going over your finances again and again because there are just so many extra costs and then…there is the possibility that your child will always need you to provide for her. I see you jumping in to speak to your child’s therapist, doctor, and teacher about their goals and progression after you’ve had a ten-hour workday yourself. I see you jump in to home routines and playtime. You are the hero. You.never.stop.
I pray you have an outlet. Do you have a “tribe” like so many of us moms do where you can share your thoughts? I know that us moms can steal the spotlight of articles, blogs, mentor programs and support groups for parents that have children with special needs. So much “self care” care discussion in our circles. Do you get that? You matter. Your health and happiness matter.
In our tiny corner of the world, no one does it better than you, Erik. First, a father to our beautiful mystery girl, our Lydia, and then a daddy to triplets-all within four years while building a career a, marriage and a home. Stop being a show off, ok? Happy Father’s Day to you, E! You’re the love of my life.
Happy Father’s Day to all of the amazing dads out there! Happy Father’s day to all of you who are on a parenthood journey that is much different than you ever expected. You’ve got this!! Happy Father’s Day to all the dads who have angels in heaven; you have been on my heart.
And in conclusion, remember those dreams about parenthood?
She loves music and soccer. She is rocking her education, even if it may look a little different. She knows right from wrong, is kind and loves God. She has helped us witness God even more in our daily life, and she is making a difference in this big old, often times ugly and scary world. Thank you for being my partner in that, E.
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