Several months ago it was suggested by Sophie’s Early Intervention coordinator and her Special Instructor that she be refered to the Make a Wish Foundation. At first I was surprised at the suggestion but at the same time it got me thinking about what could happen to Sophie. To possibly have the opportunity to give her a family trip that’s all about her planned especially around her would be something we would always have together, but the thought gave me mixed emotions. My husband felt the same way but I decided I would bring it up to the pediatrician to see what she thought about it. A few weeks later at our follow-up I told the doctor what had been suggested and she replied “yes, absolutely”. She reminded me how precious Sophie’s life is and told me to go forward that she would be waiting for the paperwork.
The process went pretty fast and before we knew it we received a letter in the mail stating Sophie had been approved for a wish, we were happy then very sad. The realization of why our daughter was getting this wish was really tough to swallow. She has severe medical complications that can lead to a limited life span, yeah that’s not something parents ever want to hear about their child. We did not think about it and before we knew it we were meeting with a wish team to discuss her wish. Two wonderful women who arrived at the house with a Mickey Mouse for Sophie which she absolutely loved and goodies for the kids. We had been in a debate between a trip to Disney and a Disney Cruise. Sophie is a sensory needy child and she absolutely loves the Disney characters and Tinkerbell so there was no doubt Disney would be our choice but which Disney trip was the debate. While some suggested the cruise I just was not really feeling it. Don’t get me wrong it’s an amazing trip we’ve been twice in the past but for her it’s just not right. First of all having her on a ship with a ton of people for days and days breathing the same air is a mine field of bacteria that I do not want to venture in. Then there is the chance that she is not feeling it and we can’t turn around once were out. So I decided Disney World would be best. She loves to be outdoors, she is a ride junkie. Can you imagine I can spend the day going on kiddie rides with her she will be in heaven! If it’s too much for her I have a better chance to turn around and leave with her. And we will be staying in a place designed for children with special needs ready for any emergency. So it was agreed Disney World would be the best place for her. So we planned it for December because she does not sweat and the heat can cause an asthma attack and it’s just safer to have her in cooler weather plus she will be a little older and I want her to have the best time!
During the whole discussion and planning of the wish I tried to keep myself together but I could not and found myself crying more times than I’d like to admit. It’s not easy to talk about your child’s health and all the times you thought she would not make it through. It’s not easy to hide your pain. My pain was flowing through all of us there that day, imagine seeing your pain in someone’s elses eyes just by allowing them into your heart. They left with heavy hearts that day, I’ll tell you I don’t know how they do it. Come into someone’s life in such a difficult time to offer happiness and hope but you can’t walk away without carrying on some of those families heart ache. To meet and instantly love these special children and know that at any moment their life can be stolen from them. These volunteers are really wonderful!
How I feel right now is very mixed. I am looking forward to this trip, to see the endless smiles of my children’s faces. I look forward to seeing Sophie floating in sensory heaven and knowing that we will have this memory always. But at the same time my heart breaks into a million pieces knowing that my child can be taken from me at any moment. That taking this wish trip has made us accept the truth, our heartbreaking reality of the severity of my child’s health and life threatening illnesses. My husband who rarely shows emotion when it comes to Sophie has cried and on several occasions and has told me “I’m scared of losing her, I don’t want to think about it”. This Wish has forced him to open up to feelings and fears he has buried for the last three years and he just does not know how to handle it. We are scared but we also know that we are doing everything humanly possible to keep her here with us. We do not know what tomorrow holds, live today as if it’s your last day. Is that not what they say? Well that is what we are trying to do enjoy life to the fullest and give our daughter, our children the happiest minutes, hours and days possible.
We will be staying at Give the Kids the World a non for profit story book resort specially for children with life threatening illnesses. My husband did not want to stay here feeling it will be too much of a reminder of why she is getting this wish. But I don’t see it that way I see it as a more suitable place for her needs as it is equipped for her needs. I know seeing other special children will be difficult but this is part of our lives now.
Now that we have relocated to North Carolina I am awaiting a call back from our new wish team to get the ball rolling. It’s the strangest thing to feel anxiety, excitement, happiness and fear at the same time. Overwhelming does not sufficiently describe these feelings. Maybe there are just not enough words to describe them. I pray a lot for strength and will contiue to do so.
I will keep you all updated.
I will start out by introducing her to any new friends.
Sophie is my shining star! Sophie is the fifth of my six natural children she was diagnosed with Cri du Chat Syndrome at 2 weeks old. She has come a very long way and has overcome many obstacles. She is loved and accepted as just one of the kids in our family which include seven children. She recently turned 3 and surprised us all by starting to walk when I honestly was not expecting it. She is a very sickly child and has battled many medical issues but we are fighting to keep her healthy. It is very important to me that I share her journey with others, It’s also the way I cope.
Sophie has always struggled with her weight. Keeping her at a steady weight has been difficult especially since dropping a pound or two over a span of days is the norm when she is sick is. The problem is getting the weight back on, it can take weeks. She is non verbal and her source of nutrition is Pediasure and purred foods. She is very sensitive to her surroundings and needs a lot of sensory input on a daily basis.
Sophie is very friendly and LOVES Michael Jackson! She is a fighter and a very determined little girl. Today she made me very proud!
Sophie has minimal hand control or lack of control and constantly throws objects. The throwing is not always intentionally more like a habit or impulse. She can hold strings (shoe laces, sweater ties etc.) which are her item of preference at the moment. She mouths them and swings them to her hearts desire.
Today while working with her she did two things. The first was holding the pom-pom and shaking it 3-4 times before letting it go. It took a good 6-8 repetitions from me and her younger brother Tristan which I use as a helper because she will mimic him before me. But she did it three times at 3-4 shakes each before losing interest. I was so ecstatic!! I called Emily my older daughter over to help me praise her and she knew, she was very proud of herself. This is a big accomplishment for us!!
The second awesome thing Sophie did today was helping in changing her shirt. I know to many this would not be a big deal but to me it’s a VERY BIG DEAL. After dinner I told her I was changing her shirt and when I put her clean shirt over her head she one by one lifted her arms and pushed it through the sleeve all I did was guide the opening to her hand. In her own time it is happening. She is slowly showing progress but ultimately that is what matters. Progress is progress.
I am so very proud of her!!!
Encouraged by my friend and fellow blogger at elastamom.com , Happy this week!
What a crazy and exhausting week I’ve had! I am happy this week is finally coming to an end. My body and mind are exhausted and just need a break.
I am happy my husband started his new job this week and is very happy!
I am happy for my friends near and far! I don’t know what I would do without them.
I am happy to have resolved my niece’s custody case (update on another post).
I am happy I have the best kids ever! I flew to Florida on Tuesday and drove back Wednesday all the while my two teenagers baby-sat until dad arrived from work and did an amazing job at keeping everyone safe for two whole days!
I am very happy to be HOME!
I am happy with Sophie’s new pediatrician and the time she took to read Sophie’s medical history before our first visit.
I am so very happy Sophie gained back the weight she had recently lost and then some. She is now weighing 24.9lbs!!!
I am happy I never lost hope that my life would take a turn for the better. Answered prayers make me a very happy person.
Sorry I’m a little late on my posts but I will catch up eventually!
She is officially a teenager. My daughter Emily that is who tuned fourteen years old twelve days ago. I knew it was happening but I was not ready for it so I didn’t think about it. How did time pass by so fast, where have the years gone. It’s seems like just yesterday at 19 weeks pregnant I would find out I was expecting. We had tried for a second baby for over six months with no success. Test after test the results were negative “not pregnant” but one day while laying watching TV my husband felt a flutter and told me to go to go to the doctor and get checked. Why the home pregnancy tests were negative? We still have no clue but the blood test did not lie. Three weeks later I went into premature labor and was put on a ton of meds, bedrest and constant monitoring for the following 15 weeks until she arrived at 38wks 2 days, the day after my 19th birthday. She weighed 7lbs she was beautiful a healthy baby girl.
She was perfect with a birthmark just above her lip as if showing off that she had stolen all of my beauty. She was always so happy and with a mind of her own. I remember when she was 3 years old she took the scissors to her long curly locks because she just had to look like Snow White, and in first grade she begged me for weeks to cut her hair which was past her waist line because the girls in school were bothering her and pulling her hair. It was a hard decision but I gave in and cut it. I’ve tried to teach her to love and accept herself the way she is because as long as she is happy with herself she will be happy.
She is growing up, she is not a little girl anymore! She loves to get dressed up, yes, with high heals! She plays around with makeup, although I still do not allow her to leave the house with makeup. I know old fashion but I will do whatever I can to keep that innocence alive as long as possible. We talk about everything, she is very honest with me. Sometimes too honest (she gets that from me) and we tend to bump heads a bit. She is strong-willed and prepared to fight for something when she wants it. But she is also an amazingly wonderful human being. She is great with kids (actually AWESOME with them) and with those who have special needs well she has no problem seeing past that. I am very proud of the young lady she is. And also a bit scared because she is a lot like me.
Happy Birthday to my Amazing Daughter Emily!!!!! May all your dreams always come true.
Encourage by my friend and fellow blogger at elastamom.com I decided I wanted to join in the fun to help me re-evaluate my week and be thankful for the things that have made me happy. I’m joining her in Happy this week and will hopefully continue on as Friday’s posts.
This week I am happy for…..
The health of my family.
Sophie starting to put on weight after losing two lbs just days before we left Florida. Her face is round again and I love to see her filling out.
The new home we are living in. It’s spacious all the kids love it are happy. And we have carpet which means no more head injuries for Sophie!
Everyone adjusting nicely to the relocation so far.
Our amazing friends Barbara and Ron who live on the same street just a few houses down. And I get to spend time with their Emma who is also 3 and has CDC too. They have really made us feel welcome and helped us feel at home. And watching Emma’s progress is really inspiring for me not to mention seeing our girls together is so wonderful.
My husband getting a job, he starts next week!
Southern Hospitality, it really is an amazing feeling to actually have people treat you with kindness, respect and are genuinely helpful. So far here in NC the process for services has been pleasant which I am not accostomed too. But I like it!
Living away from the city! Yes, that’s right, I am absolutely enjoying the quiet. Not hearing police and ambulance sirens or vehicles with booming music constantly has really helped me stay relaxed.
So, what made you happy this week?
It seems like we can’t get through a day without coughing which causes vomiting combined with aspiration or reflux which also causes aspiration. My poor girl just can’t catch a break. She lost two pounds a couple of weeks ago because she was sick and not eating and in the last few days has regained her appetite but now thanks to all the phlegm she is vomiting, ALOT! And usually right after a feeding.
It’s frustrating for all of us! I can only imagine how much it hurts her to have all that gunk come up combined with her not being able to catch her breath right after if I don’t suction her fast enough. I really want it to stop. It’s not fair she just can’t get past all these damn complications. Lately it’s making me mad, I have had enough already. Although this has become my normal it does not mean I’m ok with it, the truth is I have no choice in the matter.
The phlegmy congestion in her chest was very minimal this past weekend and I allowed her to get into the pool with her daddy and she woke up the next day sounding horrible and still sounds horrible today. It’s not fair! I cannot keep her in a glass box her entire life, she has the right to experience life. But what happens when every time you make the decision to give her some freedom to do stuff with all the other kids and each time it has a negative affect on her physically. Do you shelter your child away from the world? Or allow them a little piece of life? Especially when it’s their favorite thing in the whole world.
The truth is I just can’t escape it. It’s like everything circles back to respiratory, feeding, reflux, aspirating and sinus issues. Even a little exposure to a park will end in a negative affect on her health.
I just want to escape it all.