This blog post is for the MOWer's topic "Fear."
I have known for years about my autoimmune arthritis (Psoriatic Arthritis, Sjogren's, possible A.S. and Lupus). I have known even longer about my Avascular Necrosis (of the hips, shoulders and knees). When you have diseases that are chronic like this and that have serious effects on the body as a whole, you have a lot of fears about what could happen to you in the near future, in the distant future. Other people don't always realize how frightening it is to live your life with all these diseases, syndromes and conditions. Yes, you get used to the chronic lifestyle to a certain extent, but you never truly erase from your mind that other people are living normal, healthy lives every single day. For those that were always sick, you would not necessarily remember feeling normal unless you were not diagnosed until you were older, and you felt well even though you were sick. But for those that actually were normal for period of time, you may actually remember feeling well, and now are able to compare normal to chronic. For me, I give the age 19 when I began going to doctors by myself. I was in college and on my own. I knew something was wrong with me and sought out help to find out exactly what was wrecking havoc on my body. In hindsight, though, I was one of those people who was possibly always sick but did not necessarily remember feeling sick because I wasn't diagnosed with anything until I was older. I might have felt well even though I was sick.
Fear. I fear being diagnosed with yet another autoimmune arthritis. I fear the side effects of my meds, especially the side effects that I don't see, the silent ones that could be harming me and I don't even know it. I fear that my meds will stop working. I fear the pain will get worse. I fear I will need more pain meds. I have been on the same amount of pain meds since 2002, and have not changed nor do I intend on changing it. I fear getting sicker. I fear that my hubby will decide I am too much to deal with and leave me. I fear that I will end up all alone.
My biggest fear, now that I have a son who is 15 months old, is that I will not be able to be the best Mommy I can be. I know that I love my son with all my heart, and he loves me as well. I know that I would do anything for him, for his safety, for his happiness, to see him laugh and smile. What happens if a day comes when I can't do something for him? That is my biggest fear.
When I was told that the autoimmune arthritis had gone to my spine, neck and S.I. joints, I got so scared, not for me that I would have pain, lack of mobility or anything about my self. It was purely selfless. It was all about my son. What if this limited me with my son? I was so afraid. I had to do something. I am making sure to keep on exercising to keep my spine gently moving all the time. Aqua aerobics and belly dancing is working best for me. I feel really great doing that, and it is helping with the pain and mobility. When I stop moving, the stiffness, decreased range of motion and pain come back full force!
Then, an even bigger fear occurred! I had already had my left hip replaced in 2003, and then my right shoulder collapsed in October, 2009. I had my shoulder replaced in March 2010. Nine months later, we adopted our gorgeous little boy! I felt like it all happened in that order so that it would be easier to take care of him. I had a brand new shoulder and one good leg! I thought I would be able to keep up with him easier than say 10 years ago even. Well, that was true, three months ago. Then, the right hip started, clicking, sticking, popping and giving me more pain. I knew what it meant, but didn't want to believe it. I feared the worst.
My orthopaedic surgeon told me it was in the final stage of Avascular Necrosis, and it needs to be replaced as soon as possible. I am doing my best to keep up with a 15 month old as he races through our home. He throws a ball and runs after it now! He wants to play all the time. He dances to my belly dance music with me too. I am doing OK with the pain. I am still keeping up with my son and housework and even still belly dancing. I just fear that I am going to lose out on some important time now with my son. I am going to get it replaced May 10, 2012. That means I will have all summer to rehab. I won't be able to hold my son for a few months, get on the floor and play with him, bathe him, clothe him, run after him and play like he does.
So I am watching my biggest fear unfold before my eyes. I am losing control of my body again. The hip is collapsing. I am losing mobility fast. Soon I will have my surgery, which is a pretty extensive surgery by the way! Then rehab is a bitch! At least 3 months of intense rehab without holding and being the main caregiver/caretaker of my only son~perhaps the only son I will ever have.
So to get through a fear that is unfolding before my eyes, I must show courage. My son must see that his mommy is brave, strong and courageous. I want him to learn that although his mommy has all these health problems, she will never stop loving him. I will always be his mommy. As soon as I recover, I will be better than before, a new model! We will run and jump and play more than before. I don't think I will put him down. He will forget how to walk himself!
Children of mommies with chronic illnesses are the strongest, bravest, smartest, and also they are able to show more empathy and sympathy because they lived with their mommy and helped their mommy. I think it teaches them how to love, care and nurture. I shouldn't really fear because I am raising the perfect child!
This blog will focus on my being a mommy and having a chronic illness. It really is its own microcosm of my life~Being Chronically Mommy!
baby boy cutest blog on the block template
Being Chronically Mommy...
Welcome to the second in my chronic pain blog series. My first was my most well-known about my life struggle, balance, etc. with chronic pain and illness in "I Already Gave My Right Arm To Be Ambidextrous!" It is now titled "Now Read My HIPS!" and the focus has changed a bit to be more about how I am a woman with several joint diseases and conditions with a shoulder replacement and two hip replacements and am belly dancing! Visit Now Read My HIPS! to follow that entertaining, fun journey (alreadygavertarm2bambidextrous.blogspot.com). I also have a Blog Talk Radio Show with the same title about chronic pain and healing.
This blog is a little bit different. It has been focusing on my being a mommy and having a chronic illness. I have been and will continue to focus on health and pain info as well that I once wrote about in Now Read My HIPS! I think it is important to separate this from the rest of my life. It is not easy to have a chronic illness, but adding a child to the mix certainly has its share of trying times as well as beautiful, unforgettable moments.
I am so grateful for our little boy Mick. I can't believe that he is 6 years old as of December of 2016. Time has flown by! He is a dream come true. He has completed my confusing, complicated life. In a very huge way, he has made my life a lot more worth living. Although I have a wonderful husband, we always wanted a family, and I feel like we are now complete and happy. I have something to wake up to, and I have something to live for~Mick! It really is it's own microcosm of my life~Being Chronically Mommy!
This blog is a little bit different. It has been focusing on my being a mommy and having a chronic illness. I have been and will continue to focus on health and pain info as well that I once wrote about in Now Read My HIPS! I think it is important to separate this from the rest of my life. It is not easy to have a chronic illness, but adding a child to the mix certainly has its share of trying times as well as beautiful, unforgettable moments.
I am so grateful for our little boy Mick. I can't believe that he is 6 years old as of December of 2016. Time has flown by! He is a dream come true. He has completed my confusing, complicated life. In a very huge way, he has made my life a lot more worth living. Although I have a wonderful husband, we always wanted a family, and I feel like we are now complete and happy. I have something to wake up to, and I have something to live for~Mick! It really is it's own microcosm of my life~Being Chronically Mommy!
...Being Chronically Mommy!
...Being Chronically Mommy!
Beatles Help Lyrics.
Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.
When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.
Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.
And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.
Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.
When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.
Help, not just anybody,
Help, you know I need someone, help.
When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.
Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.
And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.
Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.
When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.
Table of Contents
- Home Page
- First of all, I have my blogger name as Dana Morni...
- How Did We Get Here?
- Welcome Baby Michael!
- Mick's Guest Book!
- First Pics!
- Our little blessing!
- So Many Pics of Baby Mick!
- G.G. and Kim Visit Mick!
- Picture Me! at 6 Weeks, 11 Weeks, 3 1/2 Months, 6 Months, and 9 1/2 Months
- Super Bowl Sunday Baby Shower!
- A Camera Phone!
- Mick is growing up so fast!
- Inspirational Guest Bloggers:
Families are Forever
Thursday, April 5, 2012
Friday, November 18, 2011
I Can Be a Mommy & Have a Chronic Illness!
I Can Be a Mommy & Have a Chronic Illness!
As you know from following my blog I Already Gave My Right Arm To Be Ambidextrous!, my hubby and I had been trying to adopt a baby for about 6 years now, and you also know that I have several chronic illnesses that cause pain, fatigue, disability and joint replacements (among other things). Well, I have always thought of myself as a brave person and a strong woman. I was strong long before the chronic illnesses became permanent, so at least I had a good foundation! I never realized how strong or how courageous I truly was until my body tested me to the extremes, and daily life became more and more challenging. I realized when I became so overwhelmed that I just needed to step back and take a good look at myself. I had gotten overlooked. It was awfully foggy at the time and hard to see ME through all the CHRONIC STUFF! When I finally took a good hard look at myself, I realized that I didn't change at all. My health changed. I was still the same Dana that I had always been; well, I was a bit more experienced and a lot more educated about the world. I didn't realize that of course until I saw myself again for the first time.
I still had the same hopes and dreams; the same values; the same beliefs; the same goals. I had to tweak a lot of things to fit a newer, different lifestyle, but above all, I found out that I can accomplish anything and everything I set out to. Now I have to constantly tell myself, remind myself if you will, that things that once were accomplished easier, faster, and more directly are now done more slowly, carefully and what seems to appear as a more round-about way. It is an amazing discovery! I can have chronic illnesses, have goals, accomplish goals, and not lose sight of ME! I love it.
So what is so important about this. Well to me, and to all of you with similar issues, when you become Chronic Illness instead of Dana, that actually becomes your identity. You lose yourself. You lose that want for life, to live for anything including yourself. I'm not even being extreme. I'm not even talking about suicide or anything like that, although it could get that bad for some people if you don't find yourself quick enough. For me, I lost who I truly was--my spunk, my love to laugh, to dance, to see the beauty in things, and to want anything for myself.
When my hubby and I were married, nearly 11 years ago, we vowed to have a family. We new we wouldn't be complete without children. That was something that we wanted for ourselves for so long. Although, we continued to go through adoption agency after agency, the foster care system, and even adoption facilitators (as well as advertising with a facilitator online), a part of me thought it would never happen after approaching the 6 1/2 year mark. I began to fear that maybe it was God's way of telling me that I "couldn't" do it, I "couldn't" be a mommy. I started to bury the goal beneath the chronic illnesses. We signed with a new adoption place in December of '09. I started to come out of the fog and realize that I needed to start working toward that goal, to be a mommy. I knew if I didn't find that hidden "mommy" inside me, she would be lost forever. I knew I didn't want to lose that want. It was something that was highest on my list of goals. We made a promise to ourselves and God on our wedding day to have a family, and here I was, 35 years old, still childless!
The moment we began with this adoption place, filled out paperwork, had our physicals, got our fingerprints and background checks, and did our home study, Dana had surfaced! I once again was getting those wonderful "mommy" feelings! Thank God. We waited and waited with this place to be matched with a birth mother. It felt like eternity! I knew there was a baby out there for us, and that was a good sign to me that I was hopeful once again to be a "mommy." We right away put the nursery together, decided on a theme (forest animals), began decorating, and we bought our first baby layette of bath towels and onesies and set it in the nursery. Jim put the crib together. We made our photo album up to handout to birth mothers that fit our preferences. We were open to any gender, up to a year old, any race or creed and a sibling up to age 8 as well. We began to prepare family and friends. We had our website put together and were linked to as many as 15-20 other websites. We even made a video welcoming a birth mother and baby into our home. I painted a gigantic heart tree and hung it behind the crib. We waited...
The most important thing here is that the waiting wasn't painful. We prayed a lot and had faith that there was a baby out there for us. We thought the baby would most likely be of another race because of statistics, so we prepared family and friends for that. And we waited...patiently...I actually had something in my life to wait for, to dwell on, to pray about besides my chronic illnesses. It was a welcome change of pace.
Then, when it felt like time had stood still, we got a phone call in October, the week before my mom's birthday. A birth mother and her mom had chosen us to parent. Wait a minute...What did she just say? OMG! The first thought that came to mind was, already? After 10 months with this adoption place, I suddenly felt like we hadn't waited that long. I know, too funny, right?! Jim was out of town at a university outside of Philly for the weekend. He hardly ever goes out of town, but he was attending a conference. He was in the middle of a Nor'easter as well! It took him 3 hours to drive 70 miles! I hadn't heard from him in hours. I was worried and excited all at once. I didn't want to call him while he was in a storm, so I waited for him to get to his hotel. I didn't want to make a decision to speak with the birth mother and her mother without talking with my hubby first about the situation. It's only right; after all, we are a team!
I explained the situation to Jim who safely arrived at the hotel. He was so excited as well. The next day, the birth mother's mother called me at home. We spoke for two hours on the phone and hit it off well. Then I spoke briefly with the birth mother. She was very sweet. I told them that they could speak with Jim when he returned home. They agreed, but felt so far that they wanted to go ahead with this. I also agreed. Jim talked to the birth mother 2 days later. It went well. We talked all 3 of us for a while on speaker phone too. We laughed about Jim playing sports, and whether or not Michael would be a good athlete or not. She wanted us to name him Michael Robert. We agreed. We agreed to raise him Catholic like ourselves, to say the rosary, to send pictures of him to the family. We had no problem doing this. Michael was going to be our son!...
Meanwhile, our last name was leaked somehow by the adoption place. We don't know how, but what was done, was done. They googled me and found out that I had several chronic illnesses--joint diseases. Our adoption coordinator contacted me to say they were having second thoughts. I was devastated! Was I right in the beginning to think I couldn't be a mom? Was I not cut out to be a mom after all? When the birth mother's mother called me, she said some awful things to me about my illnesses and my inabilities to be a mom to Michael. She obviously didn't realize that there are people who are great moms who are in wheelchairs, who don't have the ability to use their arms, who can't walk, who are blind or deaf. To some, these are seen as inabilities to be a mother, but to those that are moms and "can do it", they are just differences. They take care of their children but find other ways to reach the same outcomes. I couldn't think of how to change their minds. I felt so hopeless and helpless, I felt myself slipping back behind the chronic illnesses again. I began to lose Dana and the mommy I was to become in less than 2 months. Think fast! What to do? I offered to fly up to meet them. I offered to have my rheumatologist call them and let them know that I am perfectly capable of taking care of a child...
They just needed time...
Time for me at that moment just made me slip further and further behind the cloud...Then the phone rang. They agreed to speak with my rheumatologist. I don't know what he said to them, but after I arranged for a time for him to contact the family, 24 hours later, the birth mother's mother called and left a message for us to contact her. We called back immediately. She said that they thought about it all, and they picked us for who we are as a family and how we will raise Michael. Anyone can get sick or hurt at anytime, and we have no control over it, so they wanted us to parent Michael. We said thanks and that we had prayed so hard over this. We felt so connected to Michael already, calling him Michael to everyone we know. He had a name, he was our son already! The phone call we received was the weekend of the feast day of St. Gerard Majella, the patron saint of childbirth and motherhood, also my mom's birthday. Michael was due on the Immaculate Conception. We prayed to St. Anthony every single day for a miracle. All of a sudden, we received a wrist rosary with St. Anthony on it, then a St. Anthony key chain, and while visiting friends in Boston, I looked in the directory to find the nearest Catholic church. 2 minutes from our hotel was the Shrine of St. Anthony. We lit a candle there and said a prayer again for a miracle! Also, our hotel # was 128, which was his due date 12/8. The birth mother and her mother gave us a gift of a picture of the Holy Family: Mary, Joseph and baby Jesus. We were still in the hotel for the feast of the Holy Family because we were out of town the entire holiday season. We found out also that the birth mother's middle name was Mary and the birth mother's mother's middle name was Joe, so Michael was like Baby Jesus at the Inn! So many wonderful religious significances in the birth of our baby. We are going to baptize him June 26 which is the weekend of the feast of St. John the Baptizer! Might as well keep with the theme!
Ok, so speaking of theme; I found out that I can be a mommy! I am a darn good mommy. I am home with Michael every day while Jim is at work. I have been feeling great. I am able to do everything that any other mom can do, but sometimes I just have to go about it a different way. I might have to lay him across my lap or carry him in sling. I might have to prop him up on a pillow and feed him a bottle that way. I might have to have Jim open the formula cans so I can pour it into the bottles. Some days, we have lazy days together where we lay in bed together and play in bed. He has adjusted well with his mommy and her chronic illnesses. Ya know, that is the only way he knows it after all. It is normal to him. I change his diapers just fine. As a matter of fact, as long as the supplies are all laid out so I can easily reach them and get to them, we get those messy poopy diapers taken care of in jiff! We have lots of fun together. I am enjoying being a mom so much. Thank God I didn't keep Mommy Dana hidden behind Chronic Illness. I am so much more than that!
Our big adventures are going to the Farmer's Market together, doctor's appointments (he knows all my doctors now), and taking walks with the stroller and his furry brother Cookie! Life is so beautiful again! I'm so glad I have Michael to share it with, to teach about life and love, and to understand about people with chronic illnesses. He will be such a compassionate and understanding person because he had ME for a MOMMY! All because I decided to search for myself again!
Thanks for listening!
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