Dream of Cute Shoes

Support groups come in all styles. There are support groups for AA, Alzheimer, single parents, cancer, PTSD, anger, anorexia and parents with special needs children. The list goes on and on. All of these groups have a common theme. That theme is a connection or support from others who are in the same situation. Whether you are newly diagnosed or a seasoned support groupie. Everyone can learn, support, and relate to each other. Regardless if you have a loving and supportive family the bond formed in a support group can be a rewarding experience.

25 years ago I walked into a room full of special needs parents. I had no idea what to expect, and I didn't give it too much thought before arriving. I had been invited to a support group for special needs parents by the director of the facility where my daughter attended a 0-3 program. At the time, I did not feel I needed any support from anyone.  I was Meghann's mom, and I would take care of her by myself. I remember thinking that I just wanted an excuse to get out of the house for one evening without worrying about childcare. I was more than thrilled to use the babysitting provided to sit quiet for an hour.

What I didn't realize was that I was exhausted from lack of sleep, lack of help, lack of socialization, lack of support, lack of funds and working full time. I was overwhelmed  with providing around the clock care for my special needs daughter, and I didn't know it. I never allowed myself to be tired or the time to go through a grieving process of the dreams I had for my baby girl. The dream of dress up, cute shoes, and parties. Instead my days were filled with finding pants that fit over braces and the cute shoes were replaced with AFO's ( ankle foot orthosis) while the parties were replaced with physical, speech, and occupational therapy.

I soon learned while I was  attending this group that it was exactly what I needed. When all of my friends children were busy hitting their milestones in development. Meghann was still working on trying to sit up without help. In the support group, I met parents that were going through everything that I was with Meghann. The connection and support that I developed with these parents has been a lifesaver for me. We have shared many experiences through this support group. We went through heartache, joys, illnesses, developmental milestones, IEP's, births,  doctors, death and divorces together. To this day, I have maintained the relationships of the people that I met in this support group 25 years ago.

I hope to renew and begin similar connections through the private online support group that will be beginning soon.

As our children grow into adulthood our focus changes however the support we need in transitioning will not change.

The vision is to begin a monthly support group online where parents/guardians/families can come together in a safe environment to share their concerns, experiences, knowledge, and joys with one another. As part of the online support group, there will be professional guest speakers that will provide valuable information to the support group.

Regardless what transition or stage you or your loved one are in, you are welcome.  There will be something for everyone in this support group.

If you are a seasoned parent/guardian/family member  then consider paying it forward with your expertise to others transitioning. Let's pass on the power of knowledge to each other.

Coming soon: An in-person support group meeting in Galesburg.

Feel free to contact me with any questions and comments.  I will gladly consider suggestions or ideas

jillianm1963@hotmail.com

http://parentingcelebratingsmallsteps.blogspot.com/

Bye Mommy

Meghann turned her wheelchair around and said “Bye Mommy.'

I stood there as if my shoes were glued to the floor. I couldn't move. I was stunned. My eyes followed her down the long hallway toward her new independence without me. That was it. I was no longer needed. I waited for a trap door to open in the floor and swallow me up with all the other “useless moms.”

Dan gently placed his hand in mine, and we quietly left the building. Dan automatically opened the van door for me. He had been opening my car door since the day we met nine years ago. Somehow this small act of kindness felt different today. I was right. It was different. This was the beginning of a new journey for Meghann, myself, and Dan. I watched Dan slowly walk around the van, and climb into the drivers seat. I kept Meghann's door to her new home in my peripheral vision waiting or hoping she would appear begging to go home with us. I couldn't stop the lump in my throat from growing, and soon the tears were blinding my vision. Dan wrapped me in his arms, and I cried for what seemed like hours. When I finally stopped crying, I looked up at him with my cheeks still wet from tears. His eyes were blood shot from his own tears. We were a hot mess! Dan handed me the tissue box, and our tears turned into laughter. I mean really, did we want Meg to wheel out to us crying and begging us to go home? Well, maybe I wanted it a little bit.

Meghann moved into an independent home with seven other girls three years ago.  I think it was my worst and best day of my life. It was the worse because I had an overwhelming amount of guilt for leaving Meg in the home. It was the best day because I was excited to see Meghann begin to blossom into an independent young adult. Although I knew that Meghann would thrive, it didn't stop my guilty feelings about her moving out of my home. Of course, it didn't help when “friends” said they couldn't believe I was putting Meg in a home. My response was always the same. “Doesn't Meghann deserve to have friends, a job, and a life outside of my home? After all, isn't a parent's goal to raise their children to become independent from us? Why should Meghann be any different?

The first week that Meg moved out was like a vacation for me- no diapers to change, no medicine to administer, no therapy, no bathing, no dressing, no brushing teeth, no combing hair, and so forth. But,it wouldn't take long for the pangs of guilt to creep into my head. All it took was for me to vacuum up a puzzle piece or crayon, and my emotional roller coast of guilt would take over. I couldn’t win.

After a week, it was  finally time to go visit Meghann. I was like a kid at Christmas. I could hardly wait to pick Meg up at her new home.  We decided to take a trip to the mail after lunch. When we arrived at the mall, there  happened to be a kids fun fair.

Meghann and I went to the end of the long  line to get her face painted. While we waited, I chatted with a mom in line ahead of us.  We talked about the face painting and her children. She asked me if Meghann was my child.  The next comment left me speechless. She looked directly at me, and said “Good for you. So many parents put their special needs kids in those homes. That's so awful.”

 WOW! Meg had just moved into her independent home. That comment was like a knife stabbing me in the heart and then twisting that knife deeper and deeper. How could a total stranger make me feel guilty? I am usually quick to respond to people and their ignorant comments. Today was an exception because  I was struggling with my overwhelming desire to bring my baby home. I was constantly telling myself that Meghann's transition into a new home was not about me. It was also not about others ignorant beliefs of what I should or shouldn’t do for my daughter.  I am not sure I will ever totally eliminate guilt from my mind. I do know that every time I walk in the door at Meghann’s house that I feel the love of family from Meghann's roommates and staff. There is a positive energy that instantly wraps around anyone who is lucky enough to enter the house. I am one of the lucky ones. I have been wrapped, surrounded, and swallowed up with the genuine love and goodness in Meghann's new home. I think I can learn to live with a little guilt. At least for now. 

Listen to this interesting short TedTalk by Brene Brown. It is worth your time. She's awesome!

https://www.ted.com/talks/brene_brown_on_vulnerability?language=en

A Dynamo in Pajamas

I unbuckled my seat belt on the airplane and climbed over the seat next to me. The one disadvantage of having a window seat is when you want to get up you must climb over the isle seat. As I strolled down the aisle toward the bathroom I nonchalantly glanced at the people sitting in their seats quietly. We had a 7 hours flight and we were only half way through it.

I noticed most of the passengers had headphones attached to a device. I assume they were either watching a movie, listening to music, books or whatever else technology could offer on the long flight.

Of course, as always there was a line for the bathroom. Most females are aware of the fact that when we have to use a public restroom there will be a line. Although the airplane bathroom was unisex it was no exception to a line. I patiently took my position at the end of the line, after all I wasn't in any hurry to get back to my cramped seat for a few more hours of sitting.

While I stood in line waiting for my turn I couldn’t help notice the little girl staring at me. She must have been around 10 month old and had the biggest dark brown eyes. She had a full head of dark curly hair and little pouty lips that reminded me of the Kardashian girls. Her diaper filled the multi-colored pajamas and I found myself watching with envy that my little girl was grown up. She didn't miss a beat crawling all over her mom while looking at me in between twists and twirls. I noticed her mom was sitting alone with the little girl. The seat next to her was filled with toys and books. I am sure the idea of the seat full of stuff was to keep this little dynamo busy for 7 hours. My memory went back to the time when I use to fly with Meghann.  I only had to hold Meg for an hour or two for our flights. I thought to myself, how in the world was this mom holding this active toddler for 7 hours on a plane? I decided I was more thankful than envious that I wasn't this toddlers mom.  My turn for the bathroom woke me from feeling empathy for this mom.

When I exited the bathroom I stopped at the seat of the mom with the active toddler and said “ Do you need to use the restroom? I can hold your baby.”

She looked up with relief and instantly said “Yes, I would love for you to hold her. It’s so hard to use the bathroom and hang on to her.” The mom handed me her little girl and without any hesitation she climbed into my arms.

I played and talked to this beautiful little girl as her mom searched for an open bathroom. I could tell she was anxious not to impose too much time on me. When mom returned she thanked me over and over. I explained to her how I remember what it was like to fly with my little girl without help.

This is not the first time that I have taken the time to help a mom/total stranger who needed it.

Why is it that we are so quick to judge other moms? How many times have you witnessed a child throwing a temper tantrum in public while the mom stands there humiliated? How many times have you judged a mom for working outside the home or not working outside the home? How many times have you said “ My kid would never do that.” I believe it is time for women to start supporting each other instead of criticizing each other. I hope that the next time you see a mom who is experiencing a challenging moment to take the time to say a kind word or lend a helping hand. Isn't it about time to support each other as women/moms regardless if you agree or disagree with the parental choices being made by others?

Do you believe in Miracles?

If you practice Buddhism, Christianity, Judaism, Atheism or a higher power I think everyone is entitled to practice or not practice whatever gets them through living a rich and fulfilled life. Regardless of my practice, I believe that everything good and bad happens for a reason.  I may not know the reason for what happens when I am going through it and that’s ok. I also know there have been challenging times when I really don’t give a crap about reasons. It just plain sucks.  One of those sucky times was when Meghann had her first stroke at 5 years old.

It was a devastating time for her and  me. There are not too many things in this world that can drive a mother into a total frenzy than to watch a child suffer. It is even more distressing when it is your own child. Unfortunately, most of us know ( if you are a parent or not) what it is like to watch someone you love  suffer through an illness. I had a  sick feeling in the pit of my stomach when Meghann first became sick. It was as if I knew that something bad was around the corner. Call it mother’s intuition or psychic power. Whatever it was I knew the storm was about to explode.  Even though it was Meg that endured the  countless needle sticks, poking and  prodding, I felt every pinch and stick like I was her voodoo doll.  I helplessly stood by and watched Meghann suffer a stroke and felt powerless to control anything that was happening.  I watched as she lay in the hospital bed as her little arms grew twice in size from swelling of IV’s.  I was left on my own to collect information to make decisions for Meghann’s care. I consulted with many doctors over the course of this stroke in the hospital. There was no internet to help me out with my decisions of medical care. I had to rely on my own questions and prayed the doctors would explain it in a sensible manner that made sense to me.  I had no time to fall apart. I had to be strong for Meghann. There were too many people around me falling apart with negative talk. Of course, I had  the one with the constant ignorant comments. ( story in previous blog)  I refused to listen or pay attention to the crying around me. I would quietly wander away from people visiting and head to the cafeteria.  One day,  I slipped away from the people who showed up to “support me”  I headed to the cafeteria to get coffee and the clerk asked me for my employee ID. That is about the time when I thought to myself  Meghann needs to wake up NOW. It is time for our miracle. I had an instant rush of hope while I  marched back to the ICU with a rejuvenated mindset. I had confidence in Meghann’s ability to fight her way back to me. After all, she had the blood of my family running through her veins.

Meghann was born with Cerebral Palsy and she was able to respond to yes/no questions. She sat up without assistance and was able to feed herself. She recognized the people she was close to and attempt to verbally speak names. She said mommy, V (for my sister),  she could pronounce my brothers name and had nicknames for her grandma and great-grandmother.  One more name she could pronounce very clearly was Abby. I have a best friend who has a daughter Abby that Meghann adored. She would constantly ask for Abby. She would giggle and do whatever Abby asked her to do when they played together.  Abby was a great help to Meghann when it was time for Meg to learn her letters and numbers. Abby would sit on the floor with Meghann and they would play school. I believe it was their bond that helped Meghann succeed in school.

The day that I had decided we were ready for our miracle the doctor entered Meghann’s ICU cubicle with a grim look on his face. The latest test results were in his hand. He started with the bad news instantly.

Meghann would not be able to sit up, establish eye contact, and probably never say anything. She wouldn't even recognize me. They told me she would need to continue life with a feeding tube. He continued to inform me how the nurse would be in to show me the process of caring for a feeding tube.  As the person sitting beside me began to blubber again………I have admit that my brain was in the process of shutting down and they both continued on without me listening.

When the doctor was finished I slowly stood up and headed down the hall by myself to see my girl. I had spent so many nights in the hospital. I had lost track of time. I had no idea what day it was when I walked back into the pediatric ICU. I looked around at all of the cards, gifts and flowers. There were Mickey Mouse balloons with Get Well written across them and food that had been sent to us. We were very blessed to have a supportive family. We also had community full of people who cared and supported Meghann through her time in the ICU. I picked up the homemade chocolate chips cookie bag that a friend has sent to the hospital. These cookies were Meg’s and my favorite. I opened them as I glanced at Meghann and her eyes opened. I was shocked. I called the nurse as Meg instantly started to struggle to sit up. She was wobbling back and forth.  She had been laying in bed for weeks and her muscles were weak. She couldn’t get her balance but continued to struggle to sit up. I helped her up. I was afraid to let go. They doctors words kept repeating in my head. She will never be able to do anything that she did previously to the hospital stay.  Meghann looked up at me with her big brown eyes but never attempted to say anything.  I think she recognized me. Was this pediatric neurological doctor wrong?    Meghann reached for a cookie. The nurse nodded to go ahead and give her one. She ate it in almost one bite. She was starving. She reached for another. I could believe it. Meghann was awake. I was laughing and crying at the same time. She grabbed for the cookies. She wanted more. She looked straight into my eyes and said “Abby”  I couldn’t believe it. She didn’t say mommy and I didn’t care. She said Abby. . I knew if she remembered Abby then she was back !!!  I got my miracle that day.

Before we left the hospital  Meghann was sitting  unassisted and  she was talking.They removed the IV’s and  pulled the feeding tube out. We left the hospital with nothing more than what we arrived with several weeks prior. Do I believe in miracles? Absolutely !!!

Dr. Phil says "Get Real."

Meghann had a stroke. I had no idea at the time that children had strokes. I only thought that grandma’s and grandpa’s had strokes. Boy was I naive and ignorant.  Dr. Phil says “get real.” I got real extremely fast.  I was also about to receive a crash course about children who have strokes. I certainly did not care to take this course but here I was listening to the explanations of the doctor. Although I felt like everything up to this point had happen quickly it seem to be moving in slow motion as the doctor talked to me.  I remember watching the doctor's mouth move and I didn’t understand the words coming out of his mouth. I felt like I was listening to Charlie Brown’s teacher Wah Wah Wah Wah.

He used words like induced coma, cerebrovascular neurologist, vascular neurosurgeons, magnetic resonance imaging, paralysis, brain swelling, brain damage, memory loss and  etc. The list went on and on with technical terms that I had no idea how to pronounce. I tried to concentrate on what the doctor was telling me but I was having a difficult time comprehending everything. Not only did I need a medical degree, I was functioning on very little sleep.  I had spent a week prior to this day with a sick child and never stopped working. I went from one hospital stay to the larger one with the same clothes on my back. I had not had a restful night sleep in weeks. I was running on adrenaline and coffee.  

The doctors informed me that Meghann may lose the little motor function that she had before the stroke. I was optimistic and crushed at the thought of Meghann waking up to another set of challenges. It wasn’t fair. She had been through so much already in her short life.   Meghann was diagnosed with Cerebral Palsy when she was around 10 months old. She was nonverbal and considered nonambulatory.  She was in an early intervention class soon after her diagnosis. She worked very hard to get where she was before this stroke. She attended Easter Seals several days a week for Physical, Speech and Occupational therapy. I worked with her almost constantly. She was making such great developmental strides and now she would have to start all over.  I had confidence in Meghann that she would beat the odds and wake up. As the days went by  new tests were added daily. She didn’t seem to be responding to anything. She wasn’t even responding to pain. At first I thought not responding to pain was a good thing until I was informed that it was not good. Responding to pain is a sign that the patient is healing. It would of been great to have the internet back then to look up all this information. Well maybe not. It might of made things worse.

I  had a nurse tell me that the internet was a great thing however it could be a real challenge with people reading too much information. I always thought knowledge was power until I had this conversation with a nurse. I guess sometimes too much knowledge can be a scarey thing and perhaps self diagnosing is not the right avenue to take for yourself.

The weeks went by and the pediatric ICU doctor was there at all hours of the day and night. He had 3 other children at the time in the ICU who had suffered strokes. All of them close to Meghann’s age ( 5 years old). It was hard to stay positive when there was so much suffering going around you every day. I would sit by Meg’s bed for hours and watch her. All of the sounds of the steady beeping was enough to drive me insane. I wanted to rip all of those tubes out of her to make that  irritating beeping stop and run away with her in my arms.  I wanted to go back in time. I wanted to make her better. I wanted her to wake up and smile at me and say “mommy.”

Blah..Blah..Blah..Blah

I originally decided to start my blog from the beginning of Meghann’s life. I wanted to explain the journey that she and I had been on together.  However when April 1st appeared on the calendar  I  changed my mind.

 While Meghann was in the hospital for several weeks we welcomed 2 babies into the  family. My sister-in-laws both gave birth to healthy baby girls. They were born a few days apart. Whenever my nieces birthdays approach I am always reminded of Meghann’s first stroke. I am also reminded of the reality that life goes on with or without us.

“ Everyone at work is so happy for me that I had two granddaughters born the same week”.

 Blah…. blah…. blah... blah.

This is the statement that was first said to me while my daughter lay in the intensive care unit in a medical coma. Yes, it is hard to believe that someone could be so ignorant to say such a self-absorbed thing to me. I understand that in the time of crisis some people do not know what to say or what not to say. With that being said this was not the case in this situation.

( There is one fact that I would like to mention.. Pick your words carefully and be mindful of others feelings.)

I will never forget how this person went on and on about the 2 babies to me. I remember how my sister looked and me in disbelief.  She was just as amazed as I was that the individual wouldn’t shut up. It didn’t take long for my sister and I to walk away toward the elevators.  We got in the elevator without saying a word to each other. We didn’t have to say anything. We both knew what was going through our minds. Sure, I was happy that my sister-in-laws had healthy babies but did I really need to listen to this woman carry on about. No I didn’t. You would think that when my sister and I got up and left that this would of stopped her. No it did not stop her mouth. As soon as we walked back in she  started the bragging of her grandbabies all over again. This time it didn’t take my sister very long to put an end to the chatter mouth. I am trying to keep my blog clean so I won’t repeat anything my sister had said to this woman. Let me just say that the bragging stopped. It is strange how recalling a situation can bring up all of those old feelings.

I am going to take a breath and continue this blog later.

I want to share in my next blog the miracle that happen after Meghann extended stay in the intensive care unit.

By the way....Happy Birthday Lauren and CC

I Dream of Jeannie

       The rescue unit alarm blew louder today and it wasn’t because I lived across the street from the siren.   I had heard this whistle go off many times over the years. I am guilty for giving it little thought during those years. I grew up in a small Midwest town where we were lucky to have  a volunteer fire and rescue unit. I never dreamed that I might need those volunteers someday. On this particular day, the siren was louder to me because I had been the one to dial 911.

      Thelma appeared like Jeannie on  I dream of Jeannie.  One minute I was alone in my living room with Meghann having grand mal seizure and the next minute Thelma was there. I don’t remember answering the door. At this point, she could of climbed through the window. I didn’t care.  I was grateful to see her show up to help Meghann. Thelma was a nurse and volunteer on the rescue unit and I had known her for many years.

       When the ambulance arrived at my house Meghann’s seizure had stopped. She wasn’t responsive at this time so they quickly  loaded her little limp body into the ambulance. I sat next to her  while Thelma took Meghanns vitals and did all she could at this point.  It was about a 20 minute ride to the local hospital. It seem to be taking more like 20 hours. I felt like everything was going in slow motion and I was helpless to do anything for Meghann. I was suppose to take care of her and I felt that I had failed. She was only 5 years old. How was any of this possible?

I know now, the one thing that I did  wrong was that I had  let my gut instinct be overridden by the expertise of the pediatrician the day before. My gut instinct is something that after this ambulance ride I have always listen to when it came to Meghann’s care. It has paid off in insurmountable ways over the years.   

       The red lights were flashing and the siren was blaring  we made it to the hospital in record time. To this day, when I hear sirens I have a sick feeling in the pit of my stomach with memories of Meghann’s first ride in an ambulance.

      Meghann spent 3 days in the local hospital until she started to have internal bleeding. The general practice doctor decided she needed to be transferred to a children’s hospital. It was a good move and I was glad to agree with the doctor. However hindsight tells me she should of been transferred the day we arrived at the local hospital.  Unfortunately, sometimes it is hard to make those decisions when you're in the moment.  At 9 o’clock at night my little girl was loaded into an ambulance with her IV’s still attached  and we left the local hospital.  I sat quietly   in the ambulance beside her and we headed to Rockford Illinois. I am not sure what time we arrived at the hospital but it was late. I was going on very little sleep. Meghann had been sick for a week before all of this started. I know when we arrived at this big hospital the staff went right to work on Meghann. The phlebotomist took several  vials of blood out of Meghann’s arm.  They started to schedule tests to be done immediately. I followed her to each department while they did a MRI,  EKG and etc.  By the time the sun was coming up Meghann was settled into the intensive care unit. She had a tube in her nose, several IV drips that seem to be keeping  tune with the heart monitor beeping. She was resting peacefully as if nothing was wrong however I knew better. Meghann was in an induced coma. She would be in this coma for several weeks. Finally, the next morning after being up all night the doctor came in with some results. He escorted me to his office.

       We sat down and he looked at me and said “ Meghann had a stroke.” stared at him speechless. I thought to myself he is nuts. Kids do not have strokes or do they?

http://www.strokeassociation.org/STROKEORG/AboutStroke/StrokeInChildren/Stroke-In-Children_UCM_308543_SubHomeP