We all, in one way or another, feel a need to connect with others. The popularity of reality TV, soap operas, social media, autobiographies and personal stories show how we can be touched and interested in others. Even the nosy neighbour in your street is looking for a way to be connected with someone else. Millions connect with football teams, attend clubs and groups of many sorts, join organisations and long to be part of something. It seems it is human nature to not wish to be isolated. Being part of something else makes us feel less alone, gives us security and allows us to feel loved and supported. Everyone one of us needs that.
We are drawn to other people’s stories because so often in some way we can connect with them. Many of you reading this will have children with special needs, or be a parent, or know me personally, have a similar faith to me, have twins, or identify in some way with part of my story. The longer I blog, the more experiences I live through and the more my children grow, the more people will be able to connect. I appreciate every one of my followers, family and friends so much.
It is the same for me too. When I was struggling with infertility I received comfort from reading other people’s stories from people who had went through similar. When my children were diagnosed with autism I searched the internet for support groups and information and joined online and local support groups with similar families. When my son was diagnosed with neurofibromatosis type 1 I did the same again. We are drawn to like minded people. It takes away the unknown. When someone else has walked that path before you there is so much reasurrance to be had from hearing those four words “It will be ok”.
But in amongst that common ground is still the reality that every one of us is different. There is a part of everyone’s story that is unique because we are all individuals. So here is a recap on our story so far and a brief update on the latest goings on:
My name is Miriam. I have been married for almost 16 years now. I have always wanted children so we started trying for a family right away. Nothing seemed to happen. So we just kept on working, living, and believing it would happen in God’s timing. Finally after 7 years of nothing I went to the doctor. I was diagnosed first with polycystic ovaries and referred to hospital to be put on a very long waiting list for IVF. Further tests at hospital changed the diagnosis from polycystic ovarian syndrome to a rare condition called late onset congenital adrenal hyperplasia. More hospial referrals and life long steroid medication followed but still no further forward in our quest for a family. As IVF was now no longer a definate we applied to adopt. We went through so many assessments and checks and finally we were assessed as suitable candidates for matching with a sibling group. We had a big enough house, we worked, I had a degree in teaching and everything was finally looking like we were heading in the right direction after 9 years.
Then came a letter in the post that we had finally came to the top of the IVF waiting list! We had been told we had been taken off the list for medical reasons but now we had a very real dilemma. Doctors gave us less than 1% chance of success with IVF due to the medcial complications I had and our long history of infertility. But during those years our faith was growing. And we knew this was something we had to at least try.
So finally in January 2008 I started a form of IVF called ICSI. A huge amount of hospital visits, scans, blood tests, more blood tests, and injections I had to give mysellf daily at home. We were facing the unknown and had to keep out faith. On Mother’s day 2008 I injected myself with my final lot of fertility drugs. I had a reaction to the anaesthetic used to put me to sleep for the operation to remove my eggs so I was kept in hospital overnight. I returned again a few days later to have 2 embryos implanted from the 15 eggs I had removed. 10 days later I was admitted to hospital again as an emergency due to hyper stimulation syndrome and I remained in hospital quite ill for a week. It was during that stay that blood tests revealed I was indeed finally pregnant.
After I was home the pregnancy went well. I suffered from the usual sickness but the excitement of being pregnant made this more than bearable. At 7 weeks pregnant we had an early scan which revealed two healthy babies! In November 2008 my twins Isaac and Naomi were born healthy. Due to my medical history I had a c-section but within 3 days I was home.
The first year of having the twins was a whirlwind of feeding, changing, sleepless nights, crying, visits from the health visitor and lots of weighing of babies. I was breast feeding but Naomi wasn’t putting on weight while her brother was eating like milk was going out of fashion (5 years later not much has changed there!). The children were late to meet thier milestones and Naomi was very small but no-one seemed too concerned. It was noted Isaac had an eye squint and he wasn’t playing much But I was willing to be comforted by the words everyone seemed to say, ‘It will come, don’t worry.’
But by 18 months I was worried: Naomi wasn’t crawling, or pulling herself to stand and Isaac was crawing into doors and walls like he could not see them and showed no progress towards walking at all. This was my first rung onto the ladder of special needs parenting and it was so scary and unknown. How do you find support groups when you have no idea what is wrong? What do you type into google when you are not even sure if it is just your imagination?
At 22 months old the twins saw the community paediatrician for the first time. We now know this lady on first named terms! That day I heard the word “autism” for the very first time. I will never, ever forget that day. My world was turned upside down over night. This started the barage of home visits from professionals, the self doubt as a parent and feelings of guilt that you have done something wrong, the vulnerability of having all you do with your child open to criticism from every professionals you ever meet. That feeling of desperation.
It took almost 2 years later before Isaac was finally diagnosed formally with classic autism, global developmental delay, severe learning difficulties and pica. Finally I had plenty to google! He attended specialist nursery provision and is now in a school for children with severe and complex needs. He then started having seizures. He had several EEG’s and in December 2012 we were told he has neurofibromatosis type 1, a tumour condition that means he has brain tumours. A few months later we found out he is visually impaired too and only has the sight in one eye.
Isaac started walking at age 3. Naomi required a standing frame to help her and finally she took her first steps at 2 and a half. I never knew if it was my imagination at first, but I started to see more and more signs of autism in Naomi too. In October 2013 she was assessed and diagnosed as also having autism spectrum disorder.
One of the many people we have seem in our journey of special needs has been genetics. When asked if there were any other conditions or diseases in my family I mentioned over a year ago that there was a rare syndrome within my family. The gene for this has now been discovered (isn’t it so amazing how research can do amazing things like that) and I was recently tested. I have just recently been conformed as having Aarskog syndrome and both children have a 50% chance of having this too. So one again we face more blood tests and yet more waiting.
But in all this we still believe. My faith was, and still is, an integral part of who I am. A few months ago I made my story into a film. Sometimes it helps to see it in words and pictures and song.
What do I want people to feel when they watch this or read my story? I pray you hear a message of “Keep believing. Keep on going. And keep the faith.”
It is so much more real when it happens to you.
Thank you for following me. This is a live journey of the good, the challenging, the real life of living with special needs children and faith. It is so good to have others journeying with me…