Sometimes we just have to let things go

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.Checking off everything 22q related we were stumped on what to do for Bellas leg pains that kept her screaming at night. We were left wondering what do we do next. We took her to a pain specialist and not just any pain specialist but a doctor who specializes in locating pain and diagnosing pain. Within 10 minutes the doctor was able to figure out what we never could.  I have been learning more and more about what exactly cerebral palsy looks like. I knew the physical forms of cp you know people who are in wheel chairs or who use a cane but Bella uses neither of those. Infact if I did not tell you Bella had 22q or cp you would not have a clue anything went wrong at birth with her.

The invisible illness number 2 my daughter has. I do not worry about the cause because of how high risk and complicated my pregnancy was with her I am going to assume it was with that aspects. I had to learn to let some of my questions go and that we are doing all we can and have done for Bella

I have been told to help her breath through the pain those spasms and tears I watch her cry and wimper at night and we have her on backflen we also do physical therapy every Tuesday to address the pain and find different ways to try and relax the spasms.

I work with her spasms and knots and massage her but she does the hard part the deep breathing the crying and the letting out pain crys and the sighs in her face and the look of pain when I find that spot that knot is lodge into. The mini massage sessions last way into the night sometimes at 2 am I am woken up in her crys for me to help comfort her and rub her legs.

  If I had not gone through therapy I would not have been able to help my daughter with mindfulness and breathing relaxing techniques that seem to help keep her calm while I rub out knots and massage her legs and bottoms of her feet. I have it down to a science.

Bella can predict when we have storms and when it going to be super cold outside by the severity of her pain levels. The levels of inflamation in her blood labs are within normal limits. This time of year is the hardest and she been flying though with ease because of the physical therapy stretching and massaging we do every Tuesday. She misses out on so much school for medical needed appointments and if she didn’t have me fighting for her she would not do as well as she is doing. I am reminded why I write these blog post. I know there are so many other children who also have pain in their legs and 22q. The pains and leg spasms kids with cp are different then the pains that kids with 22q get. I know the difference I see it daily we tried the 22q treatments.

Bella teaches me that sometimes you just have to pray and breath though the pain no matter how tough life seems to get Bella will push through the pain. This week it was difficult she started swimming and had panic attacks because of her leg shaking getting on the ladder and into the pool she overcame it and actually got in the water which I am so glad to hear she is enjoying looking forward to swimming now. I know that when she is in the water it will help with her legs to stretch out her muscles and help her feel better.

Bella also had to miss two days of school she was sent home and had to miss out do to a temp of 100 the school sends kids home with a temp that high. I had to have her rest and recover and she is pushing through like a trooper back at school just 24 hours after her temp excited to enjoy swimming.

We have to sometimes breath though the hard stuff to get to the good fun parts of life. That’s what Bella teaches me and I am so thankful I get to be her mom and watch her grow and develop and mature into a lovely funny smart kind caring person she is. I am so looking forward to the rest of this year and all she will accomplish.

I am so thankful the biggest lesson Bella has shown me is sometimes we just have to push through the pains of life and move on with a smile on our face . Bella oven come her fear of getting into the poo she even did so right after recovering form that temp and completed her swimming test and is looking forward to swimming again this summer.

Sometimes we just have to let things go and not get worked up over other people's fears and concerns to make room for the positive things in life.

Lettings things go is now the thing I am trying more often.

I challange you to let some things go! List below in the comments what are some fears and concerns you need to let go of?

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The need for Self-Discipline

Hello everyone, it is nice to see all of you!

Have you ever felt like you were on the outside looking in?

My name is Amanda Ripsam I am 34 years old and look younger than I appear.

I am often told I look no older than 15 and too young looking to have children at the age the kids are. I live in Otsego, Michigan.  I have 4 kids, three out High School and a 10-year-old daughter named Bella. I share mine and my daughter‘s adventures living with 22q on my site mommiesquietplace.com.

I was originally born and raised in Toronto, Ontario, Canada.

I have a unique perspective living with 22q11.2 deletion syndrome as it also affects my daughter, 3 of siblings and my father. There are over 180 conditions that can appear in a person who has 22q from heart issues to learning delays and all in-between. There is no cure and it is a managed condition. I was diagnosed with 22q when I was 21 years old.

Today I am 34 and I am a parent mentor and special needs advocate and have my own website that I use to help walk others so they are not feeling alone and isolated like I was feeling. I formed my own tribe. When I couldn’t fit in with anyone else tribe!

Living life with a rare genetic disorder is like running a 5k race! Recently I shared on social media that Bella my 10-year-old with 22q and cerebral palsy and myself ran into the girls on the run 5k race in Kalamazoo, Michigan, I posted at check in points on my website as my daughter left me in the dust running as hard and as fast as she can with her coaches.

With 22q there are no coaches!

My goal for my ministry is coaching others through life with special needs children who face challenges like 22q.  My passion is mentoring other people so they don’t have to walk an unknown medical mystery journey without a coach cheering them on!

My training for 22q was my own journey and watching my siblings endure life with 22q and my 6-year-old brother passing away from complications of this disorder. I was well informed and trained before I had my own child.

Climbing the hills of the battle against 22q and beating this illness one symptom at a time often makes life feel as though you have been clawing your way running up that steep hill at the 2-mile marker during a 5k race. I am sharing about our race because even with Bella having a secondary disorder called cerebral palsy I am enduring and persevering through our struggles with this disorder while overcoming other challenges our family faces day to day.  I can describe that our adventures are like the feeling it feels after the 2nd mile in the race and you just have to keep on going no matter how exhausted and jelly like your legs feel. 

To get to the 5k finish line you have to push through being worn down. 22q can make you feel worn out and burned out. Learning about any medical condition can and will take it toll on a person physically mentally and spiritually.  I share on my website how I try to balance life one step at a time.

Life with 22q is just like the 5k race.   Just when you think you’re almost there at the second mile you look up and see you are not done yet, but you look down and see how far you have come!

  This passage has been a source of strength and has helped get through this journey.

1 Corinthians 9:24New International Version (NIV)

The Need for Self-Discipline

This is the verse that has helped me keep on pressing on

24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.



 

Bella has a mild from of cp and 22q11.2 deletion syndrome

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. I don't blog much about her having cp as it's so mild but she does wear leg braces at night and take backflen for leg pains.

Today she ran 21 laps for fun run. I couldn't be more proud of her for not ever letting having cp or 22q ever get her down.
Bella is 9.

As you all know I have a daughter who is 9 years old who has 22q deletion syndrome. My daughter also has a mild form of cp she wears leg braces at night and takes backflen. Bella also has a rare genetic disorder called 22q11.2 deletion. I am sharing this on hopes to find other parents or others who have cp in hopes to help us navigate the learning process of her diagnoses. I know very little about the mild form of cp. So often I see the outward symptoms of cp from people I know who are in wheel chairs or use a cane.It is unfair for me to assume that is how mu 9 year old will turn out and be because I know there are others out there with a mild form of cp like her. There has to be.

I always wonder how my daughters form of cp will effect her. She has a mild for of spastic cp.  I know all too much about 22q11.2 deletion syndrome and I know that the syndrome amplifies the cp but I am not sure how much it will as she is entering pubertyshe is 9 and all ready had to get her a sports bra for a training bra and she has been a emotional pile of goo once a month andI am assuming she is hitting her growth spurt because she is eating as much as my teenage step son. I always have to have snacks on hand lol usually high protein because I know how much she uses the calories and burns though carbs she has a high digestive rate.

I am glad that the backflem has helped partly she is not up all night crying in pain do to her legs as long as she does her meds and stretches. I believe do to her having cp her leg pains have lessened at night I am not sure though to be honest as she is only 9 years old. Bella has outgrown her leg braces and I need to get another set made.  Which will happen soon as I can get a doctors appointment set for her.
I am looking for all the information and looking for others who have it with websites similar to mine that I can find. I blog about our medical journey living with 22q11.2 deletion syndrome as I have it too but I know so little and feel so lost when it comes to the mild form of cp and am blindly following drs instructions.

Anyone else in the same boat leave a comment below.

My 10 year old is chasing down 22q and cerebral palsy running a 5k here is what I learned.

Hello everyone,

 Over the past 10 years, Bella has taught me so much about the world, life and even about myself through her eyes.  

 Bella turned 10 this year, in fact, she just had her double-digit birthday April 27 and that is a huge milestone to achieve in any kid’s life.

As you know Bella is in Girlsontherun a program right here in Sw Michigan in Kalamazoo

Bella was lucky to be able to participate she loves the top, water bottle and the shoes they give as part of the deal when you sign up. There is cost but they have scholarships as well.  I encourage Bella to sign up for things she is interested in to help develop her social skills one of the issues she has with having 22q deletion syndrome.

Most 10-year-old kids are reaching goals and milestones and developing their skills in things they like and dislike such as hobbies, self-expression through fashion and developing a self of self-worth and self-esteem. Bella most favorite past time is starting to strive for independence and driving her mom that's me crazy! while she is starting to enter puberty and learn how to cope and handle living with two different disorders she seems to think she the boss because it is the one thing she can control in a world she has to deal with so much she can not control.

One major issue we deal with daily is 22q11.2 deletion syndrome which I also have and I can have inside first-hand experience to pass on to my daughter. The other disorder Bella has is a mild form of cerebral palsy which I am just learning what it " looks like" I have friends who have children with cerebral palsy but they use a cane or a wheelchair I only know one other person who has a teenage daughter who has mild cp and she does not look like there is anything different just like Bella looks like there is nothing different about her.  I am learning all I can about cerebral palsy with the help of doctors but mostly from people we met. I know our challenge is we are learning how to deal with peers her age who pick up on there is something different about Bella but they can't figure out what usually the sweet ones ask me about Bella and are patient with her and want to be her friend and include her which makes me so grateful that Bella has a small group of friends. Bella struggles with the day to day task of staying focused due to ADHD and issues with things such as homework has been much easier to handle. We do face challenges together hand in hand or side by side I may not always blog or post about every single piece we deal with because this is our journey and have learned that not everyone wants to read about the sad stuff all the time. That's why I am writing about our joys more often than our sorrows because I want to remember the good stuff. I do journal the hard stuff but we have had easier days over the years with fewer doctors visits now that Bella is older we don't see doctors as often as we used to for her. This past year Bella has grown so much we have both been on the verge of tears out of joy, fear and yes even anger with one another as we challenge each other to do our best to overcome our own struggles.

 I can’t say that I don’t pity my poor husband as we discover this journey together and he left scratching his head most days trying to find his footing in our girly midst of sometimes it seems daily power struggles of trying to tell Bella I’m not her friend I’m her parent. Oh, the joys of pre-puberty and now entering puberty at a speeding rate I can’t seem to keep up with the daily challenges all on my own.   I seek help and ask my husband to step in but not sure where we find time after for one another as we struggle to connect from an exhausting day of trying too hard to be the best parents we can be.  If you saw my Facebook post you would see that he starts a new full-time job in Grand Rapids, Mi.  Which means less time for romantic dates and more time for the have to and the daily routines of the day in and day out the lifestyle of parenting.

In the mix of all that goes on around here, Bella needed an outlet a place where she could run and burn off her pint up energy and she found it in girls on the run a program for girls who train together to run a 5k. You read that correctly Bella is training to run a 5k if you are on any social media accounts I have you would have seen the weekly status updates of how many laps Bella did today while this week we are nearing the end we did the first practice 5k. Bella is a fast runner and kept up with the older girls while I lagged behind and helped the kids cross the street I had an idea to write this blog post because I wanted to share a part of our journey and the amazing thing my daughter is doing at 10-year-old with all she has overcome and has to manage she has shown me yet again that there is nothing we can’t achieve. I haven’t run in years but I did attempt to I made it down one street and was huffing and puffing and realizing how out of shape I truly am but she is inspiring me to get healthier.  As Bella grows learns and develops into the wonderful women she is becoming I am seeing challenges we face in a different light.

The one thing I signed Bella up for to help with some of this is girls on the run the doctors suggested to keep Bella's legs stretched out is to have her stay active be it by riding her bike or with the use of running or jogging. Bella has ADHD as another hurdle she manages and all that energy she has no idea what to do with is different it is the focus and centered when she is running. When Bella runs, she says she feels light and free like there isn’t anything she cannot achieve.  When she runs the fears, I have for the future slip away and all the doctors’ visits, sleepless nights and struggles we have overcome are all worth it.
Sometimes It does get Better after all.  

many people don’t know what someone with “mild” cerebral palsy looks like. What do they look like? If it weren’t for medical devices, would anyone be able to tell?

 Did you know cerebral palsy is the most common motor disability in children? It affects approximately three live births out of every 1,000 in the United States. Bella also having a rare genetic that is not as common as cp a different disorder called 22q11.2 deletion syndrome is another disorder on top of cp that seems to amplify the mild form of spastic cerebral palsy that Bella has.  Both are total body disorders to learn more about 22q please check out the what is 22q on my website.
Do you have a person who inspires you in your life to keep pressing on when times are hard? I sure do that’s Bella

If you want to see video of Bella running click on the youtube video and don't forget to subscribe to this website (purple subscribe button on top right page) and you can also subscribe to our youtube channel. Bella plans on making more videos and wants me to record her running in her 5k race.

 

 
Will you be there to help cheer Bella on ? Let me know in the comments below.

 

Thanks for reading if you like this post please subscribe

Will you be there to help cheer Bella on ? Let me know in the comments below.

Will you be there to help cheer Bella on ? Let me know in the comments below.

 Bella

Bella has 22q11.2 deletion syndrome and mild form of cerebral palsy and a few other symptoms that combine with 22q .

for more info on what is mild cerebral palsy please visit. http://yourcpf.org/ 

for more information on 22q11.2 deletion please visit http://www.22q.org/

Thank you for reading and helping spread awareness about these two disorders.

If you would like more info just leave a message in on the contact me page.