It was when I was in the hospital, about a day after my youngest son was born. We had already been told about his cleft palate and had met with many doctors to go over what his treatment plan would look like and the next steps to take. We had spent the majority of our time trying to figure out the best way to feed him, and once I saw that he could to suck on a pacifier, we fed a tube syringe with formula through the small hole on the Nuk pacifier and slowly released the formula into his mouth from the syringe. It wasn't true suction because he had no palate, but he was able to imitate sucking as best he could with the pacifier, and he was eating. We were all so relieved to find something that would work for him, and the nurses said I could finally bring him to my room to stay with me.
I got to be with my new baby in my room--just me and him. I got to hold him and love him the way I had wanted to since he was born. Things had been so chaotic since his birth that I hadn't had time to stop and realize what this meant for me as a mom. And it hit me, pretty hard in that moment--I now had three children, each with various needs. My husband and I had spent my entire pregnancy praying that this baby would be healthy and normal, and he wasn't--at least that's how I felt in those early days. We longed to just love a baby with no extra needs--and now here I was, with another baby taking me on a completely new journey as a mom. I knew nothing about cleft palate, about palate repair surgeries, about exclusive pumping, about feeding with special bottles, about how many doctor appointments he would need. I wondered why my Heavenly Father would send me a child with these challenges knowing what we had already been through with our previous children. Could I do this? I fell deep into the "why me" line of thought, and I knew that wasn't the right solution.
I continued to ponder on my reality as I fed my new baby with the tube-syringe method. He took to the method so gracefully--I would say it was a miracle! One of the doctors came in and remarked that he had never seen a mom of a baby with cleft palate learn so quickly to adapt and feel comfortable with feeding. The only words I could reply (and I've written about this here) were, "I'm not really sure. I guess it's because I'm his mom."
As soon as I uttered those words, all the "why me's" vanished. I no longer wondered why our prayers weren't answered, because they were. I knew Heavenly Father gave me this child because He knew I could take care of him--I was prepared because I had gone through challenges with my older children--except this time, I wouldn't have to go through any searching to find answers--they were all given to me before he left the hospital (for the most part.) I left that hospital with a team of people behind me who I knew would help me any time I called--I didn't have that with my first two children. Things were going to be okay. This was the moment that defined me as a mother--I now saw the unique role that I was given because of my children. And though I wouldn't have used this word back then, the word I want to use now to define that role is that of a caregiver.
What is a caregiver? This word isn't always used when referring to a parent of special needs children--more commonly, it's used in reference to caring for an elderly person. But it is exactly what we are--we are caregivers. The best definition of caregiver that I can find comes from the churchofjesuschrist.org. It says:
"A caregiver is a person who provides regular care for someone who is unable to meet some or all of their own needs. Often the person receiving the care is a family member living with a physical or mental disability, chronic illness, or effects of old age. The time commitment required to care for such
individuals may range from a few hours a week to 24-hour care.
Caregivers are often required to balance work, church,
and other family responsibilities while at the same time attempting to provide
individual care to a loved one. While providing care is often a very rewarding
and enriching experience, the demands of continual care can also cause worry,
exhaustion, financial stress, anxiety, and fatigue. Caregivers may have needs
that are not visible to others, and they may also be reluctant to ask for help.
Caregivers may have a higher risk of stress-related depression, anxiety,
substance abuse, or physical health issues. They may also experience grief,
resentment, or anger over the loss of their hopes, expectations, and even
dreams. Their day-to-day lifestyle, freedom to do things they want, and goals
for the future may all be different from what they once expected."
Does this describe your role? Are you caring for someone who cannot meet all of his or her needs? Are you spending a large amount of time caring for this person? Do you find it difficult to balance your role as a caregiver with other aspects of your life? Do you struggle to ask others for help? Do you have stress or anxiety or other health issues? Or do you have anger, grief, or resentment over the loss of your expectation or dreams (of yourself or your child's?) I can certainly answer yes to all those questions.
In those first few days of my youngest child's life, I was able to see clearly what my role was going to be from that point forward. Asking "why" wasn't going to get me anywhere. I love this thought I came across recently from a talk given by M. Joseph Brough: "Frequently, our first reaction to hard things is “Why me?” Asking why, however, never takes away the hard thing." The only way I could help my child in the way he needed me to, and to continue caring for my other children, was to embrace this new role, and embrace it fully.
Now that I can look back on the times I have had to embrace each new role I've been faced with as a mom to my unique children, I can identify what has helped me to accomplish this. That's not to say that there still aren't times that I want to run away and take a long vacation because the pressure can be so intense at times--but even feeling this way, I would never want to change the experiences I've had because they have made me who I am. Here are some ways I have "embraced" being a caregiver.
1. Accept that your child has a health condition or disability.
This was probably one of the hardest things, at least for me. I spent too long in denial over the behaviors my daughter showed in her early years. I just wanted her to be perfect, and I really thought I would never be able to care for her if she wasn't. I wanted things to be easy and more predictable--I wanted to read the normal baby books and follow traditional milestones. I think in some ways, as she grows older and reaches new stages, I find I am having to accept things all over again, and it's hard. But without acceptance, there is no way you can fulfill your role as a caregiver and provide the care needed for your child. Without acceptance, you could find yourself stuck in resentment or anger, which will keep you from loving your child the way he needs to be loved. Acceptance means you are embracing, with open arms, whatever may come.
2. Learn everything you can about your child's disability or health condition.
I think this goes without saying because most parents that I know who have a child with any kind of disability or health condition become experts in that condition--so much that they sometimes know more than doctors! I remember when my neighbor told me she thought my daughter had autism (which I wrote about here). After she left, I cried, for a long time, because, let's be honest--I was scared. But then I went straight to the internet to learn everything I could about autism, and it was the first time I took steps to embrace the role I would have once she received her initial diagnoses. Learning about the health challenges of your child means you aren't afraid--you are arming yourself with knowledge, and this means you are willing to do whatever it takes to care for your child.
3. Don't compare your child to others.
Comparing your child to others is never good, especially when you have a child with a disability or health condition. Celebrate the milestones--big and small--and on your child's timetable only. Throw away the normal baby books! Keep working with your child--follow the advice of doctors, therapists, and don't give up--you will see progress. And when you find yourself in a conversation with other parents bragging about what their child can do, praise your child for what he can do as well, even if it doesn't match up. Doing this will give you more confidence in your role as a caregiver and help you to embrace it for what it is.
4. Be willing to acknowledge that your life will be different now.
When your child receives a diagnosis, you are suddenly thrust on a new path, and, like the definition of "caregiver" mentioned above, you often have to let go of the hopes and dreams that you might have had for your child. Now I want to be clear--this does not mean that you can't set goals for your child, or work hard to help your child reach her potential! It just means you will have to reframe them in a way that is individualized to your own child's strengths and needs, and that's okay. Once you accept this fact, you can more fully embrace your role as a caregiver. In a former article I wrote for The Mighty, I said, "As special needs parents [and I would change this to "caregivers" now], we have to be open to the 'road not taken.' The 'road less traveled' might be a little more lonely, but I can promise you will make new friends along the way."
5. Do your best to stay positive.
This will do wonders for you! I know it's so hard to keep a positive outlook when the days are long and the days turn into weeks and months and years and you feel like there is no end in sight, but there is! It's all about perspective. Some words from a very wise man, Neal A. Maxwell, who suffered from leukemia: "glimpses of eternity can help us to travel the next 100 yards, which may be very difficult.” The way I see it, you can either take the bitter road or the better road. Which one is going to help you be the best caregiver for your child? Which one is going to help you embrace the role that you are in and help your child reach his full potential, whatever that may be? Yes, those next 100 yards may be difficult, but do it with an eternal perspective in mind, and realize that what you are actually doing is serving your child in a way that no one else can--your child needs you.
6. Don't think you have to do all of this in one day.
I decided to add this last step because, let's be real--no one is going to wake up tomorrow feeling like they've accomplished all of these things--it takes time. It's normal to go through stages after your life changes so drastically. I certainly did! I know for a fact that if I hadn't been through the challenges with my two older children, that when my youngest was born with his own challenges I would have completely fallen apart! And you know, I still do sometimes, and that's okay. What matters is that we keep going because we know our kids depend on us.
That day in the hospital was a turning point for me as a mother--the newfound courage that somehow made its way inside me as I uttered those words to the doctor, "I guess it's because I'm his mom," gave me the confidence to move forward in my role as a caregiver. I knew that I had the skills to care for my children, and if I didn't, I would be able to find the answers--and I have. Every step of the way I have been guided as I've been a caregiver to my children.
Maybe you are still struggling with denial, or anger, or sadness. That's okay. You will know when you've reached that turning point and have fully embraced this role as a caregiver to your child.
In the coming weeks, I want to share my thoughts about 4 other topics related to being a caregiver that I have researched for a caregiver support group in our local area: they are trauma, relational stress, compassion fatigue, and caregiver burnout. I will discuss each of these, one at a time, to give more insight into how I've dealt with these in my experience as a mother. I hope you will join me so we can learn together!
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