Wednesday, April 28, 2010

Lotsa words Wednesday!!

I had the privelege of sharing our journey with Faith with my class. It is the first time I have ever shared the story in public like that...I was nervous, shaky...full of butterflies...

The teacher asked if I would be willing to do it, and I said yes...I spent a long time putting together what I was going to say...It was kind of cool to reflect on the past 2.5 years. After I spoke the teacher opened it up for questions...which again, was nerve wracking, but again, it was worth it, just for me to be able to reflect, again...

I wanted to share it with my blog readers...this journey will explain why I am sporadic at blogging sometimes!!

Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Living With a Child Who Has a Developmental Disability

* I am going to share a bit about our family before Faith was born. We don’t feel sad about what we have been through and I don’t want anyone else to feel bad for us. These are the experiences that have made us as strong as we are today and I wouldn’t change any of them. I had been married 13 years when Faith was born. We had 4 kids living at home with us, the oldest was 12 and the youngest was 2. In between the first 2 and the last 2 kids, in 2000, we had another baby girl who was stillborn. She had a knot in the cord and passed at 32 weeks. We worked through all those emotions and learned a lot about grieving and what was important in life, we believe that things happen for a reason and we saw how this helped us later on. We were a non-immunizing, non-medicating, homeschooling family, for 6 years while my husband worked outside the home. We didn’t like to have a lot of involvement with government agencies, we liked to do our own thing. We took lots of time for our family as that was and is our main priority. Before Faith was born, it just seemed to be the right time for the kids to go to school. I thought that it was important to have time to spend with just the baby and 2 year old, and maybe have some time for me. We had sold our house and were in the process of getting ready to move (we took possession of our house 1 week after Faith was born).

* 10 days late, on November 2nd, 2007, Faith was born, she was 10lbs 4oz and had a lack of oxygen, due to a knot in the cord which was also around her neck and she had aspirated massive amounts of meconium. She started having seizures immediately and they made arrangements for her to go to McMaster in Hamilton.

* Our lives turned upside down in an instant, she spent 1 month at McMaster, we stayed at the Ronald McDonald House for the first 2 weeks, then travelled back and forth every day for the next 2 weeks. It turned our kids lives upside down, we all of a sudden couldn’t be home with them all the time, we juggled them with family and friends who were an amazing support system. They also helped us move into our new house during that first week and a half.

* The first week that she was there, they had cooled her body temp to stop any more brain damage – from the seizures. She had multi-organ failure which included her kidneys and liver, she was toxic because her kidneys weren’t functioning and she had gained 4 pounds because of the fluids not leaving her body. She was on medications for blood pressure, to help her kidneys function, received platelets and plasma, had her upper right lung collapse and was on a ventilator for 15 days (when she self-extubated herself)and that is just a drop of what she had to endure.

* We had several meetings with the doctors, nurses and social workers regarding the level of care we wanted for her. We were told that we could (and should) let her “declare for herself” and take her home that way. We were told that she would have CP, blindness, deafness, she would be mentally retarded, have a g-tube and a trach, she had 100% severe brain damage and could potentially need dialysis for the rest of her life. She would be very expensive, have a poor quality of life and would be a lot of work to take care of. We had to think about our other kids. We were told that many parents regret the decision to keep their kids alive...we were fortunate because she was still under 16 days old and we could make the choice to stop all life prolonging efforts... We had assumptions made about us, from not being emotional enough to not being realistic, because of our choices and we fought the ethics committee to keep her alive (and because of our fight and follow up afterwards part of the ethics policy was changed!)

* We finally were so upset that they had not listened to us that we ended up yelling at them. We told them that we were never going to bury another child and as long as there was a heartbeat and machines to help keep her alive they were just going to have to respect us...and they finally did. That was the 3rd intensive meeting and only day 7.

* We learned that most nurses were amazing and were just as much there for us, emotionally, as they were for Faith, physically. We sat by her bedside day and night...sometimes in shifts, to sing to her and talk to her and touch her as much as we were allowed. We had a number of nurses say how much they enjoyed working with us and with Faith because we were so positive. I think we were too numb to be negative. We still visit some of our nurses to this day.

* She eventually became well enough to be transferred to our local NICU, as long as we had a g-tube put in, because she hadn’t learned how to suck. She spent another month there. She was home 2 days before Christmas and it was the first time her siblings got to meet her, as we were a non-immunizing family before she was born (that has since changed...), and because of that they weren’t allowed into the NICU’s at all...

* We were so fortunate that this happened in the hospital...may sound crazy...but, we have never been on wait lists for the community services that we have received, she has always been at the top of every list for specialists. That is definitely a blessing, considering some service wait times are over 2-3 years.

* When we came home, we had so many home care workers through CCAC. As I already said, it was a huge blessing to have this support. I had never been so thankful to live in Canada. They helped us through the beginning, we could call them anytime, day or night. It was also very overwhelming to have people watching over us all the time and in our space. We couldn’t just be us, we had to be available when they were, we weren’t allowed to make any changes in Faiths care unless it was approved first. We didn’t feel like her parents a lot of the time, and we felt like we knew nothing about raising kids.

* The nurses showed us how to care for the g-tube and how to change it, clean it and repair it if necessary. They taught us what emergency signs we needed to watch for. We became personal nurses, therapists and advocates for Faith. And our other kids learned to accept the new challenges, and they learned about ignorance from various people we would meet day to day...

* I always tried to have 1 day a week with no one in our house by piggy backing appointments, and that was hard to do, but I felt that I needed at least one day that I wouldn’t have anyone walking in, watching us or just being in our space!! She had Physio, she had a feeding team – the Speech and Language Pathologist and the Occupational Therapist, we had a nurse, a local social worker and still have our dietician. We met with workers from a local respite organization who helped us with forms, and we met with our CCAC case manager. We have Infant and Child Development following her. We have switched over to our local kids therapy organization for most of these services now. It was and continues to be overwhelming sometimes. This all started within the first month of being home. And this only includes our home/community care – not medical doctors...

* So far she has been diagnosed with epilepsy, and strabismus (crossed eyes) and Acquired Brain Injury (which is very broad) with autistic tendencies. Also failure to thrive (not enough weight gain and her head has not grown for at least the past 6-8 months) and global developmental delay (which is a catchall for many areas of developmental delay). There is a stigma that we are currently working through with 2 of these diagnoses – The acquired brain injury is something that isn’t seen often in children – unless, of course, it was shaken baby syndrome (that was sarcasm). The closest support for kids with ABI is in London. The other diagnosis that raises eyebrows is failure to thrive – people automatically assume that means neglect. We have also had her compared to children who are born with Fetal Alcohol Syndrome.

* We go back on a regular basis to visit the doctors, we see a paediatric ophthalmologist, a paediatric neurologist, a paediatrician, an optician and I could go on and on. Even though there are a lot of things still going on with her, they are absolutely amazed. They can’t believe that she can walk. According to her MRI and CT scans, she should have Spastic Quadriplegia, but the paediatric neurologist was floored and checked her twice to make sure there was no CP present.

* Some of the things that she struggles with now are not so much physical. She has some social boundary issues and we are working with her with social stories and introducing PEC symbols and sign language to her. She has an overly high need for sensory stimulation. She can be very aggressive and we apologize to other parents a lot.

* As a family we have learned that it is not a bad thing that has happened to us. It is just our journey and we may as well laugh and enjoy it. We shock a number of people with our attitude and our sense of humour, but for us it is our sanity. Around certain friends we could share our little jokes...when it was feeding time we would joke that we would just “set it and forget it”, or we would suggest that she liked her nose so much that she couldn’t stop looking at it. At 7 months Faith pulled out her feeding tube and never needed it again. When people ask about the scar on her tummy from the g-tube, we tell them that she has 2 belly buttons – one from God and one from man...though we were careful who we talked like that around, not wanting to offend others...We still have our moments of questioning and anger at the situation and those times could last for a day, a week or longer. There are some families that have a very hard time working through this part of the journey, but we are all made different and handle situations differently. It would be wrong for me to judge them on their attitude when I have never been in their shoes (even if the diagnoses are the same). We are fortunate because we have a very strong faith and we believe in prayer and miracles, we are reminded daily of this as we are living with a miracle who wasn’t supposed to survive past day 2! And when we get frustrated we remind ourselves of that...

* She has what is known as an invisible disability. We know about it but she looks like a typical kid to everyone else. That is very frustrating because we are constantly explaining to people that she does have some special needs. Even in our Infant and Child Development playgroup we have been asked why we are, we feel lonely we don’t fit in anywhere.

* Because there is no real specific diagnosis yet, and we may never get one, we are always going to be telling people that she has a developmental delay. We had even made up our own “terms”, just to keep some people quiet. At one point, when we were asked what her diagnosis was we said that she had “SDD”. People seemed impressed...we learned that acronyms go a long way sometimes. It really was just a significant developmental delay...but we created the diagnosis to stop the questions and judgements.

* If I say that I am concerned about something Faith has started doing, some people have told me that they don’t see it so it is fine. For instance, at one point when I started to notice that Faith was staring off into space a lot, like she was checking out, I would tell people that I was concerned about seizures. Many times people would respond with – she is probably just daydreaming or she must just be tired...She ended up with more severe focal seizures and ended up being diagnosed with epilepsy. When things like that happen, I feel like my concern has been negated. We have learned who our real friends are and who our acquaintances are.

* There are some things that we hate hearing. We hate it when people tell us that the dr’s don’t know what they are talking about. It is frustrating hearing that, because while they don’t know everything...they know an awful lot, and without them she wouldn’t even be alive. We still have our battles ahead with dr’s though, because they are very quick to explain all concerns off as the brain injury, and sometimes I feel there may be more involved, this is the next stage for us.

* The other thing that we have gained from this journey is the amazing community that we had never met before. This group of people with special needs and their families are right in front of all of us. Many of us (including me in the past) have overlooked these families or judged them, because we have nothing in common and how could we possibly understand them? Now we are here. Most of us are willing to answer questions and want our kids to be accepted. I have found amazing strength in this circle of friends, the acceptance and non-judgemental attitudes, the freedom to cry and laugh and to celebrate even the smallest things.

* With every new diagnosis they look for with Faith, we go through this grieving process. Chronic grief is the hardest thing to explain, or for others to understand if they have never experienced it. We grieved that “normal” baby, all the typical development stages, we grieved that loss, we accepted where we were and were starting to enjoy our new normal. Then we have another situation arise and a new diagnosis on its way and we grieve where we should have been again and the place we had finally accepted, we now have to learn new stuff again but eventually we accept where we are at that point. We realize that it is not that bad, it could always be worse. Then boom, the next diagnosis comes and again we are thrown into the grieving process. This is what our lives have become and even though it sucks we are stronger for it. We are more compassionate because of it and we continue to accept our new “stages”.

* It would be nice if everyone could be as understanding, supportive and compassionate. Some people need to learn to keep their opinions and comments to themselves when they are not asked for. People need to become aware that “special needs” are not an illness and they are not contagious. My daughter cannot take a medicine to be cured because there is nothing to cure. We wouldn’t want her to be any different, because then she wouldn’t be ours. And we would have never been able to learn from and enjoy our Holland

So, that was it...that is what I spent a long time working through...I still get emotional when I recall this part of the journey.

I also love to see where we are now...tomorrow is Faith's first day of preschool!! I can't get over that...I am so excited for her. It is a preschool where her therapists all follow her and assess her while she is in play:-)

We couldn't be more blessed then we are now!!


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