How being a Special Needs parent has aged me.

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Being SN parent aged meThis was me before I got pregnant with Sophie, I was 29 years old. I was a different person. I was beautiful and I felt young. When I look in the mirror this is who I want to see. I hardly recognize myself anymore and it saddens me.

I struggled with low self-esteem most of my life and always had a really hard time seeing myself. I worked hard to get to a place where I finally felt good about myself. I have always bragged about how I want to age gracefully welcoming the years I have earned in this life. It’s still important for me to age gracefully but I feel as if I’ve aged ten years in the last four. That’s not aging gracefully! That scares me because I want to enjoy my years and looks as much as I can and as long as possible.

Being SN parent aged me_2

This is me now. That’s my grandmother, I look just like her.

The last four years have brought so much stress to my life. Being a Special Needs Parent can be so hard and draining. I gained a ton of weight. I was angry, alot. I cried, alot. I rarely sleep and boy have I worried!

I have wrinkles on my face, my hands and even my toes. I just found some gray hair too, now that’s a BIG DEAL to women. All the anguish I have felt has bled through my soul into my body. My energy has felt drained and I have to push myself for physical motivation.

I cannot stop myself from aging because that’s a natural process but I sure as hell am not going to allow myself to age at the accelerated rate I have been these last few years. It’s time to take action.

So I am working hard to laugh, alot. To be happy as much as I can and get healthy. Worrying will always be hard to let go of but I will do my best to not allow worry or stress to overpower my peace of mind.

I don’t want to look older than I am. I will not let life take that away from me yet. Look out Mother Nature I’m taking back control!

I wasn’t always so hopeful

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When Sophie was diagnosed with Cri du Chat Syndrome I felt as if the world had stopped spinning for me. The list of medical complications began to overwhelm me to the point where I shut down. While Sophie was in the NICU I did not talk about any of it, the syndrome or medical issues. I was on auto pilot. I woke up, took care of my kids and the house and headed to the hospital to be with my baby. After six weeks in the NICU she came home.

Despite having four children previous to Sophie I found myself scared and insecure about how to care for her. She was so small and fragile and I was terrified. She was not your typical baby, she was hooked to monitors with alarms going off constantly; each time her heart rate fluctuated or she held her breath too long. She choked constantly. I became distant and withdrawn. I lost my hope, hope for her and myself.

With each passing day I saw the syndrome more and more and it terrified me. I became angry, I yelled at God and was horrified that he would do this to me. “Why me?” I remember crying out with a heavy heart as I tried to make it through one more day.

I fell into a deep dark place, I was certain I could not do this. I did not want to do this, I could not be a mother to a child with medical complications and disabilities. My hope was gone before I had even begun to build on it. I doubted Sophie would ever reach any of her milestones, I fed in to all the negativity the doctors gave me about her life expectancy. I did not eat or sleep and all I did was cry. Those were some of the worst days in my life.

People always tell me how much I have helped them on their journey and that is one of the reasons I share my journey. I want everyone to know that I was not always so hopeful, the truth is the strength I have now was built up it was not always there. It was built up with hope, love and trust.

Hope. I found hope one wonderful night when I came across another family’s blog, that moment changed my life forever. I log into facebook (my support group) and see all the wonderful pictures of other individuals with CDCS and their accomplishments; this just fuels my hope. It helps to keep me strong.

Love. The love I feel for my child and the love that surrounds her and my family everyday. This love gives me strength and hope for the future.

Trust. The trust I have in God and my family and friends that support us everyday. When Sophie was baptized the bond between God and myself was sealed, I trust that she is in his hands and he will do his will through her.

I no longer focus on what the future will bring. I focus on today, the wonderful blessings I do have and the privilege I already have of watching my amazing child flourish despite all the challenges that continuously try to stop her from blossoming.

I wasn’t always this hopeful or positive. I had to travel down a difficult road to get here but it is possible to overcome the hopelessness. We live on borrowed time, life is too short to dwell on the what if’s. I no longer feel guilty about having felt that way because having gone through that helped me ge to the place I am today. A place with immense hope for tomorrow. A place where I can live each day focusing on all good. A place where I can experience all the emotions that sometimes flood my soul with no guilt. I am in a good place and although I was not always hopeful I am now and always will be.

Here we go again..update

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I tried to wait before I took Sophie to the doctor but her symptoms worsened. I ended up taking her to the ER. I normally do not venture into the hospital because for her the exposure is extremely dangerous but I needed to make sure she did not have pneumonia. It was late in the evening and her cough and fever had worsened, at this point she was refusing to eat.

We went through the usual at the hospital; checked her breathing, ears, nose and throat. Despite my efforts to dissuade a xray we needed to make sure pneumonia was not the culprit.

I told the doctor I thought it was a respiratory and a sinus infection. I told him what our usual routine was; a rocephin injection followed with clindamycin for 10 days and orapred for 5 days. He agreed we would follow this treatment plan and we waited for the x-ray. He agreed about the dangers of having her in a hospital and was very understanding. He said it had been a very long time since he had seen a patient with Cri du Chat syndrome.

The doctor later returned to say that the x-ray showed no signs of pneumonia but she did have a respiratory infection (no surprise there). It all took about 4 hours and we were back home. I have to say I feel very lucky that I have not had to deal with doctors giving me a hard time when it comes to Sophie’s treatment when she is sick. It really saves me alot of unnecessary stress. So thankful for doctors who work with parents to provide the best care for their patients.

It’s been three days and Sophie is slowly feeling better. It’s taking her alot longer to bounce back from this one. She still has a cough and is now wheezing which merits another visit to the pediatrician today. She is slowly beginning to eat again but is needing alot of input to stay calm.  She has been crying alot which has made for some very overwhelming few days.

And, last night Tristan spent the entire night with a fever and miserable. We just can’t catch a break from sickness in the De Leon household :(

Here we go again.

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Here we go againIt’s been one month since Sophie underwent massive sinus surgery. I thought the surgery would open a new door to healing for her, was I wrong?

Two weeks ago Sophie began experiencing a runny nose and I became paranoid. Since she does have pan sinusitis she will have sinus issues her whole life so I thought this was going to be the norm. Several days later I noticed that the skin under her eyes began to look shady again and the familiar odor of sinus infection was reappearing.

As a preventative treatment plan we are treating her with Bactroban a cream antibiotic that I mix with sterile salt water and administer via her nasal irrigator 1-2 times a day. Some times as soon as she get’s the nasal treatment her nose clears up. The last couple of days however have not yielded the same results.

She has a bad runny nose, it can be clear or turn a shade of yellow or green. Yesterday she spent 90% of the day sneezing, refluxing and vomiting which explains why she woke up super congested and wet with a persistent cough that barely lets her breath. When she has a bad reflux day she always aspirates on the reflux. She is spewing gunk constantly.  It’s her body’s way of expelling all the crap from her lungs but the whole process is painful and draining for her. She is also warm with her temp slowly increasing, ugh.

(Loud SIGH) I refused antibiotics last week at her surgical follow-up because I want to give her body a chance to fight off what ever bacteria is ailing her now. Her ENT agreed it would be best to wait especially since she had just gotten off of two weeks of antibiotics from her surgery.

It’s a good thing I have my own little pharmacy of her usual meds to save me a run to the doctor’s office. I gave her some steroids this morning and began persistent nebulizer treatments with vigorous chest PT. And I now have no doubt that she has a full-blown sinus infection too. But, I’m waiting. I want to give her little body a chance to react before I rush her to the doctor and bombard her with antibiotics that don’t work.

Maybe I was kidding myself thinking her health would significantly improve, I was really hopeful though. I really thought this time it would be different. The surgery was very beneficial, it cleared out all the bacteria that was just growing inside of her but it was not a cure. There is no cure, she will have to live like this her entire life and that majorly sucks!

I’m looking into getting her off of Pediasure and onto something else more natural without the sugar and chemicals and maybe this will help her body in a more positive way. Once I figure it out I will definitely share it with you.

In the mean time, please say a little prayer for my Sophie girl. Thank you!!

This kid speaks out eloquently about being bullied…

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Joining in with a fellow blogger to spread awareness, our children should not be bullied. This should not be tolerated! We live in a society where it has become acceptable to judge, discrimination and abuse others with no consequence.

How would you feel if this was your child? No child should have to endure this, EVER!

Share the story of this brave young man who is strong enough to share his story in hopes that he can help others.

Let’s make a difference!

This kid speaks out eloquently about being bullied….

I don’t wonder anymore.

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I don't wonder anymore.

I can remember a time when all I did was wonder what my life would be like being the mother of a child with special needs.

Being a mother to a child with special needs is just like being a mother to a typical child with the only difference that feelings and emotions are enhanced. I am more aware and grateful, more than I ever thought possible.

I wondered if I was strong enough to do this, I doubted myself. I no longer doubt my strength. I know I am strong enough, I am a child of God who has incredible faith and the Lord gives me strength. It also helps that I have this incredibly strong child, she gives me strength.

I wondered if I could cope with this new reality. I no longer wonder if I could cope, it’s not as hard as I imagined it would be. I still cry but not as often as I once did. There are days that I feel sad and down and feel a little sorry for myself but I get over it. I have to allow myself to feel all emotions so that I may find strength to overcome it.

I wondered how my other children would handle it. I no longer wonder how my other children are handling having a sibling with special needs. Sophie is just one of the kids, they do not see a syndrome or disabilities. They see her, their sister and they love her and accept her for who she is.

I used to wonder what my child would be like, what her capabilities would grow too. It was scary to live with uncertainty about the future of your child.

I don’t wonder anymore. My daughter is beautiful, smart, strong and a willfully determined little girl. It may take her some time to process somethings but she does it and she does it beautifully. I don’t wonder because I know her, I know how far she has come and I know her journey is far from over.

I don’t wonder because I see her live, learn, laugh and play. She is perfect in her own way. She will never be tainted by the malice in today’s society, she will always be happy and only see the good in everything and everyone around her.

I don’t wonder because I don’t have too. My hopes and dreams for her grow everyday. I am no longer scared for either of our futures because from here there are only possibilities.

I don’t wonder anymore because I don’t doubt her. Because I have had the privilege of watching her defy the odds for the last four years and this is only the beginning.

Their first crush

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First crush

I don’t want my children to grow up too fast.  This is difficult as we live in an era where respect for your elders is disappearing. Where little girls think they are women and young boys think they are invincible.  I always tell my children to enjoy being a kid because once your grown up there is no going back. I grew up way too fast and it took most of my adult life to overcome it. I am happy to say I was finally able to let it all go but I don’t want that emotional struggle for them.

My focus with my children has always been honesty, we talk openly about drugs, peer pressure and pretty much everything including sex (age appropriately) of course. I have always encouraged them to focus on their studies and love themselves just they way they are. It’s hard to stay focused when you’re a kid and everyone else (society) is moving at a faster pace.

I’ve always told them when they are ready for companionship what matters to me is not their skin color, ethnic background or financial status but the kind of human being they are. I want for them to find someone who will respect them, that will bring out the best in them. Someone that is kind and above all cares for them. It is not for me to choose who they want to be with.

My eldest son and daughter have their first crush! My daughter has never really expressed interest in boys until now, she is two months shy of her 15th birthday. My son will be 18 at the end of this year but this is the first time I have seen him so taken by a girl. I was very happy that they did not hide it from me and came to share their news with me. My daughter told me it was an unexpected feeling with someone she would have never thought; they showed me a pictures of their crushes. Friends are sometimes the greatest companions and although this is just the first crush it begins a new phase in their journey to adulthood.

So as I enter this new phase of their life, I am nervous but at the same time I trust my kids and have faith in them. I know they have a good head on their shoulders and will make good decisions and if they have any doubts I am here for them. I am very proud of them that they are confident enough to talk to me and share their new moments with me.

We do the best we can to raise our children. We teach them, guide them and love them. We can only hope they choose the right path but in the end they are individuals and will make choices for themselves. I can only hope they will continue on this path and not allow the temptations of society to tarnish who they have already become.