The reporter had to compact the interview and fit as much information into 2 minutes as possible, and I understand that. There is more to it...
He asked me some direct questions and other events more open ended. And one that I most wished he could have put more of my response to was ; "how as parents have you dealt with a child with such severe issues? What advice would you give others in your situation?"
Let me tell you more...
It's been HARD, emotional, exhausting, rewarding, and as times scarier than anything I've ever encountered. No parent ever waits for thier precious baby to arrive and dreams of doing the Heimlich maneuver at least once a day for close to 2 1/2 years, searching for answers online, in chat rooms, through friends, pushing for specialists and having to have a "come to Jesus" meeting with Healthcare providers to get the referrals...feeling so overwhelmed but knowing this baby and his sister's lives were in your hands every time they ate or drank something and then if that bite or swallow of liquid didn't go down properly fishing it out or encouraging them to cough it out (if possible). All the while trying to not show the panic you feel welling up inside you because they are choking and if you were able to get it out this time the outcome could be very bad, so you stomp it down, keep a calm face and just follow your instincts and your 8 years of previous CPR training and get them safe again. And through the last year of health ups and downs I've come to realize that God knew these children should be ours. That we were already equipped or would find a way to become equipped to keep them safe and to push as hard as possible to move the mountains required. I have found that I am not intimidated to back down when medical professionals are skeptical of what we are telling them, and I am not afraid to look silly in standing my ground when they attempt or authorize things that as the parents of these children we know would do harm. I've cried my way through 3 surgeries in the last 10 months and been more afraid than I ever thought possible when they came out of anesthesia more slowly than normal or had heart deceleration into the 70's unexplainably. I've sat up in the hospital room bawling my eyes out when I was finally alone and the baby was asleep because I felt so alone with my husband and 2 others children unable to be with us and people questioning everything we've ever done for our kids. Been through 2 CPS visits, which even though our children are safe and it was proved that they were; I would never wish that on any parent.
This quote perfectly sums up the last 2 years...
"Being a Mother is learning about strengths you didn't know you had. And dealing with fears you never knew existed."
It's doesn't just apply to Mom's but to Dad's as well.
I was still waiting to hear back from Shodair Children's Hospital about Nico's chromosome test, until yesterday. And my fears of still no diagnosis came to the surface again. Another test that didn't tell us anything other than "he's normal" when all evidence to the contrary is present. And I received this after his speech therapist/eating therapist informed me that she was stumped because he has such strong aversions to liquids but doesn't seem able to get past it even with working on it. It's 5 steps forward and 7 steps back constantly. I broke down when I got alone... the mantra in my head "this isn't fair, why can't we get answers? Why does this time in our lives have to be so hard? I am exhausted, sick of working 50 hours a week or more and then 2 or 3 therapists appointments for 2 kids and sometimes 1 or more doctor's appointments or miscellaneous appointments...how much longer do we have to do this!"
I want answers for my babies health issues, answers would possibly help us know more ways to help, and without them it just feels hopeless. Like this time in thier life will never end or get better. I didn't think answers were too much to ask for but we are thwarted at every turn. I feel weak, defeated and am still trying to hold onto any good news or milestone accomplished.
The advice I would give any parent of any child who is showing signs of distress or your gut tells you something just "isn't right"... LISTEN. Find the answers you need or solutions available. Go toe to toe with your medical professionals because YOU live with this child, not them. Don't buy into the hype that you didn't go to medical school and that they are the only people who can give ideas or find answers for you just because they did. I am not saying they can't help, but you know your baby and your ultimately the one who will administer whatever treatments are needed. You can be a voice for your child eve in the face of complete opposition...if I hadn't gotten in the way of the nurse pouring water into Nico because his swallow study was "normal" she really could and would have hurt him.
"Normal" life is hard, life with a child with special needs can sometimes feel like fighting a battle against an unknown foe and makes everything more challenging. Rise to the occasion, give yourself grace to have breakdowns and doubts, and keep striving for whatever your "normal" is going to be. There is ALWAYS more to it...
