Everyday is a lesson

With each passing day there are new lessons that life can teach us. When you make a commitment and choose to change your mind, heart and soul to let go of hatred and negativity all you need is the will and you will succeed.

I am not perfect, nor do I pretend to be but I like the person I am today. When I look back to all my yesterdays I understand why so many mistakes were made. Accepting the mistakes I’ve made, forgiving myself and others have led me on a path of happiness.

I am happy, the happiest I have been in a very long time. My children are happy and calm, and our home is peaceful. I cannot even remember the last time I cried, that is a blessing. And I accomplished this serenity with a tremendous amount of faith and support from my wonderful husband.

Even though I am in a good place emotionally and spiritually is does not mean my life is perfect, I will have days that leave me drained and spent. Everyday circumstances can effect my moods and my energy level can also have a huge affect on me.

But, with each day and every encounter I have a choice. I can choose to be strong and forgiving or be angry and bitter. I am no longer angry and bitter. Life is too precious to waste one moment of it.

Take each day my friends and find the lessons life is giving you so that tomorrow will always be better than today.

If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present. ~ Buddhist Wisdom ~

Just what I needed.

I have had a great day! I had the opportunity to meet a fellow CdCS mom and friend Alaine and three of her four children; Hannah, Jeremiah and Gabrielle who has CdCS along with Gabrielle’s nurse Tia. It was awesome, I can’t remember having this much fun since last April for Elyas, Tristan and Sophie’s birthday party . We have been in contact on Facebook and texting but had not been able to get together because well, life happens and she lives two hours away. We invited other CdCS families but no one else was able to make the visit. We had so much fun and Tia is truly like one of the family

I woke up really early and cooked up alot of Cuban food since her son Jeremiah was anxiously looking forward to it. They arrived before noon and there was no need to break the ice from the moment they arrived it was as if we had been friends our whole lives. The kids became friends instantly. I was amazed at how smart Gabrielle is, my husband was excited to see her ability to communicate her wants and needs. Her and Sophie are so much alike despite the almost six-year age difference, it truly is amazing! There is no doubt our children are soul siblings. During the visit while watching Gabrielle tell her mom that she was being silly my husband looked at me and told me “Our Sophie will be like her” with a big smile on his face. Those are the moments that make my life so full, I can’t imagine living with a husband that did not have such a positive outlook for his child, it is so very important.

So we talked and laughed, and talked and laughed and talked and laughed some more. We came to realize we all had so much more in common than we had imagined, from our families to the way we choose to raise our children. We were all so comfortable with each other there was no awkward moments just love and a profound connection where a life long friendship begins. I can’t wait until our next visit!

The flowers they brought me!

Alaine, Gabrielle, Me & Sophie

Elyas and Jeremiah…New friends!

Tia, Alaine & I

This is how we spent the day!

The kids had a blast!

Time for lunch!

I wasn’t kidding, all we did was laugh! Trying her Flan for the first time!!

What made me happy this week 3/1

Today I’m linking up with Elastamom’s Excerpts in Happy this week!

Happy This Week

 

This week was a tough one with me battling some health issues but I am happy to say I still found some happy!

I am so incredibly happy that I am feeling so much better. My energy level is back and other than my carpel tunnel doing its monthly annoyance, I am feeling good!

Sophie looks so  much better! It’s been a while since she has really felt good and it’s so wonderful to see her this way. I am happy the doctor decided to keep her on the antibiotics through this month to keep the sinus infection at bay because it really seems to be working. She is focused in her therapy sessions and very happy! Amazing how much different she is when she is feeling good.

This week my husband and I made a decision that will bring big changes to our lives in the next few months, I will eventually share it with you I’m just not ready yet and I don’t want to jinx anything. All I can say is I’m feeling really great about it!

What really has me happy is that it’s Friday and tomorrow I’m having a fellow CdCS mom coming over to spend the day with my family! She is making the two-hour drive to meet me for the first time and I am super psyched because in the time we have chatted it totally feels like we have been friends for years. So I will be treating her family to some Cuban food and deserts as our families get to know each other better. Not all friendships are compatible so when you find someone who truly gets you and appreciates you make sure you return the love!

Hope you all have an amazing weekend!

So drop me a comment and let me know what made you happy this week?

 

 

My normal

I once lived a different normal. I lived without any clue of what families of children with special needs battle on a day-to-day basis. I was once ignorant to the millions “yes, I said millions” of different genetic anomalies or mutations that can happen to a developing fetus. I’ve done my homework and I can tell you it’s frightening how many babies are affected by genetic disorders, diseases or developmental delays. I believe all the chemicals in our foods and environmentally have alot to do with this surge in so many complications with our children today, but that’s just my opinion.

I can remember seeing a family that had a child with special needs and feeling sorry for them, “those poor people” I used to say to myself and instead of speaking up and talking to them I would quickly turn away for fear of saying the wrong thing. My heart used to sink each time I saw a child with special needs and I felt a sense of loss for the family. I used to think their life was full of sadness, that there normal was destroyed by the nightmare of their reality. As I look back now I feel so stupid for making assumptions when I had no clue what their life was really like. But, now I do know.

Now that I am a parent of a child with special needs I am more aware than I ever thought possible.  I don’t want people to feel sorry for me but I can see that some do and it bothers me. I hope I never made anyone feel as uncomfortable as some have made me feel. I hate the stares more than anything, I wish people would just ask me if they are curious but don’t stare.  What are people so afraid of? Maybe some of them are afraid to speak up and say the wrong thing as I once was and I understand that but there are also those people who stare maliciously. Those people who stare at you and your child as if disgusted to be in your presence as if they are somehow better than you. It’s truly sickening at the ignorance in the world today.

I still live a normal life it’s just not your normal it’s “my normal”. My normal includes an array of doctors and therapists, special dietary products, IEP’s, special toys and equipment. My normal is just as normal as any one else’s. We have family nights, hang out with friends, go to the movies, play games with the kids and even manage to fit in a date night every few months. My family experiences highs and lows as all families do. My normal may leave me with little free time but that’s part of being a parent anyway. My normal includes a toddler who is not yet able to be independent and may never be fully independent but for me it’s not abnormal.

Normal: conforming to the standard or the common type; usual; not abnormal;regular; natural.

You see we are all different, no two individuals or families are alike so what may be normal for one may not be for the other.  So how could my child born exactly the way she is, naturally, be abnormal? It does not make sense. I refuse to say my life is not normal because this is the natural state in which my family lives. Just because my normal is not the same as your does not mean it’s anything other than normal.

Anxiety attack?

The last few years have been continuously stressful for me, we lost so much and had so much to overcome. Emotional distress is not a stranger in my life but I have reached a point where I felt I was in control of it. While I have felt very relaxed lately and I feel as if my stress level has dropped by at least half I think my body has not caught up to my emotional state. Yesterday was a tough day for me, Sophie being sick terrifies me and yesterday she had alot of vomiting, reflux and aspirating and it was a combination of the three together. This was only a partial symptom as she had been battling a fever over the weekend so we visited the pediatrician, again, for another three-day dose of Rocephin injections which will be followed by weeks worth of back up meds. It has only been twelve days since her last three-day Rocephin treatment and here we are again.

While I felt calm throughout the day I was worrying, how could I not?  I felt really drained and sad and started to experience tightness in my chest. As the day progressed I just felt worse, on my drive back from Ariana’s counseling session I began to feel chest pain and was feeling just a little off. I did the usual cooked dinner, finished laundry and took care of the kids. After my shower I thought it had subsided and assumed it was just stress but when I tried to go to sleep my heart began to race, I felt light-headed and shaky. I got up and of course googled my symptoms which I know you should never do but I did. I made myself some tea and sat in the bed and watched TV until I was able to breathe without strain. By this time it was almost two in the morning, I was so tired all I wanted to do was sleep so I relaxed down and closed my eyes but just as I began to doze off I felt my heart racing and the pressure in my shoulders and chest returned. I was very light-headed and I began to shake. This continued until almost four when I was finally able to fall asleep.

I awoke two hours later to get the kids off to school and I realized it was still there, that heaviness and pain in my chest.  I had a glass of milk to get nutrition in me but as the morning progressed I started to feel worse. I tried to meditate, I wanted to clear my mind and try to control my breathing in hopes that I would feel better. I prayed and was beginning to become afraid for myself but all the while all I could think about was who would take Sophie to get her second dose of rocephin injections if I had to go to the hospital. It took a good three hours but I began to feel better, just in time to get the kids up, dressed and take Sophie back to the doctor.

As much as I try I cannot shut my mind off it’s running ten miles a minute and there is nothing I can do to make it slow down. I worry about everything! And not having health insurance is another reason I hesitate to rush to the hospital. It’s sad that in order for me to have medical insurance it would take almost half of my husbands paycheck, weekly! We just cannot afford it, I have bills to pay and children I must provide for and sadly my health has to sit on the back burner.

I’ve never experienced an anxiety attack but I am assuming this is what happened to me, its logical right? Despite being a little light-headed I’m just extremely tired. In the back of my mind though I wonder if it’s the early sign of a heart attack because let’s face it, you never know and it’s not that uncommon. Or, maybe I’m just being paranoid and reading too much into it because I cannot shut my brain off. I know my body and I am generally quite healthy, last night scared me and I don’t ever want to go through that again.  I hope it was just an anxiety attack because I just can’t get sick, I have too many people to take care of.

Not improving

I was so happy in the first few months following our relocation because Sophie’s health seemed to improve, I thought we had finally reached the first step on her journey to recovery. As I look back I now know it was the calm before the storm that I had not been anticipating. Sophie’s health seemed to be improving and she even started putting on weight which was HUGE for her.  In the last seven months she has gained a little over four pounds and although it has fluctuated when she has been sick as soon as she feels better her weight works itself back up to 28lbs and has steadily maintained. I remember praying for the day when she would  gain and maintain her weight after always being told she was failure to thrive. I long-awaited that day because I had been told by so many medical professionals that once Sophie began to put on weight she would become stronger and it would help her immune system strengthen. I clung to that hope for so long and here I am today realizing the weight has not really made a difference in building her immune system as we had hoped.

Sophie has gained weight and  has become physically stronger and her development has also taken off reaching new milestones continuously and never-ceasing to amaze us. I can say with certainty that her physical strength has helped her progress cognitively and her determination grow stronger. Her will to learn and live is stronger with each passing day.

Her health on the other hand seems to be worsening as if she is taking steps backward away from recovery. We cannot kill off the bacteria in her sinus cavities, she is not draining and her chest is full of mucous. Rocephin which was our go to antibiotic is beginning to lose its effect on her, I fear we will be left with no options in the future. We have been forced  to use antibiotics not approved for children on more than occasion after months of failed attempts to kill of bacteria, we had no choice if we wanted to save her life. We will not know the long-term effects that may come from the use of such medication for a long time.

The sinus infections are just not healing, the symptoms are worsening and the effects are draining her more and more each time. With each infection we have to use more and more medications sometimes even combining two or three different types of antibiotics and even then they do not seem to be working. When we think it’s cleared up it only takes a good week before the symptoms resurface with a vengeance. She is becoming weaker each time and the symptoms are more difficult to control.

Next month cannot come around soon enough for me so we can get the sedated CT scan done and prep for her sinus surgery. I pray this time the surgery will work, Sophie had her first sinus surgery two years ago and will now need another one. The ENT does not see improvement and urged us to intervene before the infections become uncontrollable. It is our only option to try the surgery again now that she is physically stronger to try to give her body a fighting chance. The plan is to clean out her sinuses to rid her body of all the bacteria that’s just growing in there and make sure all her nasal cavities are open so she can properly drain. It may be the best opportunity she has to allow her immune system to build up some defenses. I pray it will work, at this point I have no choice.

I worry every day, I’m afraid she will be taken from me and I don’t think I am strong enough to handle that. Science can only do so much and when they have no answers or options where do you go from there. I pray to God all day, everyday and moments like these I fear he does not hear me. I know he is present I see his miracles in her everyday but fear is powerful and threatens my faith.

This is not fair. Life is not fair. What did she ever do to deserve so much sickness. I took care of myself, I did everything by the book and yet my child was born sick. All I want is a few steps forward for her and maybe I’m being greedy wanting her health to improve, she is doing great developmentally after all, right? Wrong! I want her to be healthy because I want her to live, I want to watch her grow up and learn, and laugh, and be an aunt and experience life. I may not expect the same accomplishments from her that I would with my other children but it does not diminish all the hope and dreams I still have for her.

I just want her health to improve, that is NOT too much to ask.