The second you get your baby in the car for the very first time.
Everything Changes. Every Facet of your life. You have made it. No more driving back and forth to and from the hospital, no more eating only whats close by, no more alarms giving you heart attacks, no more cave. You have been reintroduced to sunlight. Your baby has been introduced to it for the first time. Everything is a shock factor and everything is a first. Even for the parents…
We were completely unprepared and clueless. We thought we had it figured out and knew what to expect. Sure Beckham was leaving with a feeding tube, meds, shots and oxygen but our assumption was just oh well he will continue to ween off everything and be fine. He will be just a normal baby now. Getting a nurse was more of a suggestion from the hospital so I decided not to get nursing because I had it all figured out. I had no clue he needed to go straight into therapy. I had all of his specialist phone numbers and follow up appointments. What else could there be? 2 years later we know better. We have to train ourselves to not anticipate a day where he will just be a “normal” kid (for lack of a better term, I now hate the term normal). We have to remind ourselves to not have any expectations for the future. He will just be Beckham.
We were in for a rude awakening of the NICU rollercoaster / nightmare going on and on. 1 months in I realized I hadn’t even left the house, not even to go grocery shopping. Because I couldn’t. Physically I couldn’t with him and all of his gear on my own but also there was no time! There were so many appointments every week and the continued diagnoses, hospitalizations and future surgeries were never ending. By month 2 I reached out to a nursing company who did his assessment, started full time and also made sure we got enrolled in therapy ASAP which was the first I had heard at that time that he needed it. It was a disaster. And while 2 years later things seem to have slowed, they really haven’t. He’s on less meds, his appointments are less frequent but we have more specialists and we continue to get new diagnoses and medical issues at every turn. As he gets closer to school age (age 3) he qualifies for up to 13 different types of therapies through the district now as well. Assessments have just started and each one takes hours. He will likely qualify for 75% of those.
We quickly discovered everything would continue to break the bank and we would have to take significant portions of our savings out to maintain care and more. I was staying home for a year while we adjusted and the breadwinner of the family this was a significant hit. Even now that I am back at work part time the never ending financial struggles haven’t stopped. It always seems the items we have to put money towards and their amounts increase significantly the older he gets. Clothing (double the cost for adaptive), shoes for his braces (start at $50), therapy tools and toys(Not even going to go there), medical gear, now a car (for a used adapted car for wheelchair with 50-100,000 miles we are talking $40K), shit we even bought a new house that would be more accommodating for Beckham.
Even with all the daily insanity of having a NICU baby to now special needs toddler what has struck me the most are the people that change. Not only us. We certainly have lost all patience for bullshit and have our priorities straight because we just don’t have time for it. But everyone around us has changed too for better or for worse. Let’s walk through the variety of people we have come across during our times of crisis.
- We have had the people that were close and completely dropped out of our lives. I am taking totally MIA and never to be heard from again even when prompted.
- We have had people we were not that close with step up in huge ways!
- We have very select few that have remained constant and unchanged by everything to which we are eternally grateful for.
- There were the “i don’t do hospitals” people which really struck me because this wasn’t like an “oh I’m in the hospital for a few days” ordeal. This was a “our whole life is uprooted and we are living there for over 6 months commitment” oh yea and my child could die in the hospital.
- There still are the people that refuse to understand Beckhams need for everyone that visits him to be in 100% be health, WITH their flu shot, tDap and other vaccines! These are the worst because it’s already exhausting trying to keep your child healthy right? But to have to continually remind people, even if you had plans, they are irrelevant. His health is more important than you visiting and why would you want to risk that? AND why are you putting me in a position to have to reiterate it? I digress…
- There are the other disregards for smoking, washing hands, etc. I have literally been in the hospitals garage and yelled at people for smoking. The garage is underground so not well ventilated, it’s a CHILDRENS hospital and there are clear signs everywhere to not smoke in the garage. I cannot tell you how much that irritates me. Do people really not understand lung disease? AGH!
- There are the people that totally support you from a distance.
- There are the constant questioners (When will he do this or that? or is he doing this yet?)
- There are the people that pop back in 2 years later not knowing Beckham still can’t eat, walk or speak and become super uncomfortable around you all.
- Then there are the complete disregard for Beckham as a human being people. This level of old school mentality that he is somehow a lesser human being and “normal” child. These people cannot even stay in the same room with him due to their level of discomfort. He is a CHILD. The level of ignorance never ceases to amaze.
While we have changed personally from everything over the last 2 1/2 years it is all of the above, (the people that have changed around us) that have changed us the most. As human beings we have remained the same but our relationships have suffered, and some have grown. Friends, Family, Acquaintances. I think these changes were just a surprise to us cause you always want to assume the best in people. You want to be confident in knowing that they are there for you. Unfortunately, in crisis, people do not remain a constant and you will go through a mourning phase of the friendships that were.
We have come to expect certain levels of discomfort from, lets say, outsiders. The stares as we go out in public and all. What we have found is we get a level of that plus discomfort from those closest to us. The questions are never in short supply wherever we go. While the questions can be exhausting sometimes for us (because we always get the same questions) we do also understand for some it helps them “understand” Beckham a little more. The biggest question, that often irks me, is the one about “what everything might mean for him in the future?”. What’s important to know, is that this question always brings us heart ache. Because it is the unknown and because we have just as many answers as you do for the future. We don’t know. And most of the time we are ok with that. Sometimes we are not, because this question forces us to go through that whole thought process of what might of been vs. what is. Don’t get me wrong. We of course have hopes, it’s hard not to, but we do not have expectations and I think that difference is what’s important for people to understand. For us its important that we simply say Beckham may never speak or he could become the President of the United States. When it comes down to it though, what does it really matter honestly? We already know we are going to have a long road and a hard fight for years to come. The outcome for us remains the same. He is our Child. He is our Miracle. He is our Fighter. His rollercoaster of a life is never ending. Everything and everyone around us is forever changing but the one constant is him and our love for him. For us, He is and will always be our boy, Beckham.