In many ways I wish we could go back to that day knowing what we know now. Although I suppose that not knowing exactly what we were in for was probably a good thing. Much of the knowledge that we have now about follow up appointments, scheduling, in home nursing care, state provided assistance for children like Riley, therapies and unexpected hospitalizations has come by just diving in and figuring it out.
often joke that hospitals should send you home with a manual titled "What Now" or "What's Next".
I remember how scared we were to drive away from Healthbridge alone. It was a freeing feeling and yet as we drove away we both knew we were beginning the rest of our "new" life. The unknowns were the worst.
One of the hardest things for us to adjust to was having another person in our home 24 hours a day. I remember when we had thrown around the idea of a night nurse when the twins were newborns. We decided against it mainly because we couldn't imagine being asleep while someone else cared for our babies in the next room. Now we really had no choice in the matter as Riley needed 24 hour care.
A year later our nursing staff is a part of the family. We welcome new nurses and find peace in our veteran nurses who know the program and how our family dynamic works. We could make it work without nursing care but, it would be hard. As it is, going anywhere with Riley requires 2 adults that know how to care for her. One driving and one sitting with her in case of an emergency. Making sure Riley gets her meds and feeds on time while controlling her 2 crazy brothers is near impossible. Trust me. We've done it multiple times and felt like we'd run a marathon after! Riley's nursing staff helps our family maintain a relative sense of normalcy.
When we arrived home we had no idea what was ahead of us, ahead of Riley. For 100 days we were in the safety of a hospital where doctors were available 24/7 in case anything went wrong. Need a med adjusted? it could be done that day. Have a concern about Riley? The doctor would be right in. It took us until the beginning of this year to really get Riley "stable". In many ways we are just now starting the next chapter with Riley where (knock on wood) frequent hospital stays start to become less frequent and planning for the future is more realistic because the anxiety of not knowing what tomorrow may bring is beginning to subside.
In the last year Riley has gotten glasses, received weekly therapies, had 5 or 6 hospitalizations (at a certain point you stop counting because it becomes a bit depressing), has had a cochlear implant placed and activated, has been to a multitude of doctors appointments, had multiple blood draws and diagnostic tests and has grown!
Riley is now almost 35 inches long and weighs 33 lbs! Riley is rolling, looking around, sitting up with assistance, interacting with her brothers, smiling and slowly but surely improving.
There will never be a time that I don't wish that this hadn't happened to Riley. We still miss our "old" life terribly. On days when our stress levels are through the roof and we wonder how we will make it all work all we have to do is look at our 3 kids all together and it puts life in perspective. We wouldn't have it any other way.
Riley is courageous, hard working, stubborn and the bravest 2 year old I know. Each and everyday for the last year Riley has taught us lessons in patience, faith and persistence. I know that my life is infinitely better because Riley is in it and I'm not saying that just because I am her mommy.
We're looking forward to what the next year has in store for Riley. There will still be many changes and things that will be new to all of us but, together we'll get through it. I am confident that Riley is going to amaze us all in so many ways!
We hope you all have a wonderful weekend and know how much your support, good thoughts and prayers means to us. Not only to Dave, Logan, Mason, Riley and myself but, our extended family as well.
The emotional toll this has taken on every person that loves Riley has been tough. The support that our families receive from their circles of friends and colleagues has been felt by our little family as well. It does not go unnoticed or unappreciated. So thank you. To each and every one of you.
And as always....
Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley
We love the Hoppers!
ReplyDeleteDr. M, Cindy C and all the gang