Sam spent his first seven months of his life in the hospital. Since then, he has spent a lot of time in and out of the hospital. Unfortunately, it’s the nature of being a child with a trach (breathing tube). I can’t even begin to tell you the amount of gifts our family received while Sam was in the hospital, and still receive. The outpouring was and is overwhelming in the most heart warming way.
Of the many gifts you receive when you have a child in the hospital, the ones that are tailored to your child’s diagnosis or situation hit you in a way that goes deep into the heart. The gift says, “I have been in your shoes.” For a moment, you don’t feel completely isolated. Someone else has been there. This is a powerful thing.
Jack’s Basket and Fiona’s Hope were those gifts for me. Jack’s Basket is a nonprofit that gives baskets to families to celebrate a diagnosis of Down Syndrome. Enough said. Fiona’s Hope gives baskets to families who have had an extensive stay in a hospital with their child. Again, enough said. To find out more about these two incredible organizations, click on their names.
A long time ago, these two organizations sparked something in me. For over three years, I have been dreaming of giving a basket to families who will take their baby home from the hospital with a trach (breathing tube). A basket that says, “I have been in your shoes.” A basket that says, “You are not alone.” A basket that says, “Although our stories are uniquely different, we share this commonality.”
One year ago in March of 2020, just when Covid was starting to invade us, I delivered my first basket. My heart was overjoyed to be able to bless a family with items that clearly show, they are not the only ones on this journey.
Now, almost a year later, I recently delivered my eleventh basket!!! It’s crazy to think that many babies have gone home with a trach just in Minnesota this past year. The curve balls thrown at each of these families are unimaginable. Each story is unique, but share one common theme.
So, what’s the big deal about the tenth one, you ask? Well, I told myself, after I am able to deliver ten baskets, I have to put it out there. So, here I go. My hope is to be able to bless as many families as I can who have been dealt this difficult, but incredibly rewarding, hand of cards.
Each basket is filled with items that have been or are useful to us. Do you want to see what’s inside the basket?! Click here to see the new page I added to find out more about what’s in each basket.
If you would like to make a monetary donation, click here. At this time, the donation you make will not be tax deductible. I am in the process of starting a 501(c)(3) nonprofit organization and when that happens your donations will be tax deductible.
Although I feel nervous about “putting it out there”, I am extremely excited at the possibility of being able to brighten a day of more families whose lives have taken a turn down an uncertain road. Things have moved a lot faster than I anticipated!! This week, I will be reaching beyond Minnesota!!
Yes, Sam has Down Syndrome. It always throws me a little off guard when people think it is a thing for us. I don’t know, maybe, if it was Sam’s only diagnosis, it would have been. It is not Sam’s only diagnosis. Sam is what the medical world calls a medically complex child. When your child fights for their life, a diagnosis like Down Syndrome is not what you think about. When your child is in a medically induced coma for 34 days, you don’t care about Down Syndrome. When you spend months in the hospital, Down Syndrome is no big deal. When your child has multiple surgeries, Down Syndrome is not a concern. When you bring your very medically complex child home for the first time, you are not thinking about Down Syndrome. When your child is put under one to two times a month to get his esophagus stretched, Down Syndrome is not important. When you make weekly, sometimes more, trips to the hospital, it’s still not a thing. Yes, maybe it was initially, for a split second, but I don’t really remember that part very much at all. I just wanted and still want my baby alive and healthy. When you have a medically complex child, that is your focus one hundred percent of the time. Down the road, when hospital stays, surgeries, the fear of Sam getting a cold, etc. are a thing of the past, I’m guessing then, Down Syndrome might be a thing for us, but maybe not, I don’t know. Until then, and always, he is just just our baby who needs to be loved and kept as healthy as possible.
If you are someone who thought Down Syndrome was a thing for us and you feel bad about it, please don’t! It has weighed on my heart, and I want people to be aware. It makes sense to me. Down Syndrome is something more people can relate to. Not many people have heard of Long Gap Esophageal Atresia and even less have heard of a Type II Laryngeal Cleft. When you have a medically complex child, Down Syndrome is not your focus. This doesn’t mean we want to pretend Sam does not have Down Syndrome, quite the contrary. This also doesn’t mean people can’t ask questions or can’t talk about it with us. It’s only a glimpse into the heart of a mama with a medically complex child, who’s sharing how Down Syndrome is not on her radar right now.
A new, sweet friend of mine, recently posted a blog related to a mission she is not only trying to, but is beginning to make waves in a sadly still biased world. In order for you to understand my feelings, you have to take a minute and read her post first…
I honestly do not remember much about Sam’s Down Syndrome diagnosis. After reading Carissa’s post, I drilled Sean with many questions, about what he remembers, while also trying to piece together what I remember.
What Sean remembers…
…when the ambulance came to take him and Sam, not long after Sam was born, the Nurse Practitioner from Children’s told him not to worry and that this baby would be the light of his life. She told him about her daughter who had Down Syndrome and how she was the joy of her life and so many others.
Message…Sam’s life is a gift.
What I remember…
…a neonatologist from Children’s calling me at Mercy Hospital the day after Sam was born. He told me what, at the time, they thought was wrong with Sam. He also said, “All the nurses are telling me he has Down Syndrome. I don’t see it, but the nurses are always right. We will do the blood test and we will see.”
Message…Sam may have Down Syndrome, which is neither good, nor bad, just fact.
What we both remember…
…after Sam’s dramatic first time appearance into the real world, someone asking if we knew he had Down Syndrome.
Message…Sam may have a diagnosis the family is not aware of. Again, neither good, nor bad, just fact.
…when we first received Sam’s blood work confirming his diagnosis of Down Syndrome. Although, neither of us needed blood work to confirm it. This was really hard for both of us to remember. We think we pieced together the neonatologist who delivered the news. That’s about all we can remember. I can tell you, I know, this same neonatologist views Sam’s life as a gift, as she chose to feature him on the MN Neonatal Foundation’s (Click here) website.
Message…Sam’s life is a gift.
Not once did any medical personnel make us feel Sam’s diagnosis of Down Syndrome was a hopeless or bad thing. Some of what we remember was neither good, nor bad, just fact. Never did we feel we had to convince anyone Sam’s life is a gift.
I’m sorry all your hopes and dreams are over for your child. What if we would have heard these same words during Sam’s often hopeless looking situation? Would we have the same feelings as we did when I wrote about Sam having Down Syndrome so long ago? I think so, but they probably would have been stronger and/or more intense. Would it have made our already hard journey feel heavier? I believe so. If we felt we had to prove Sam’s life is a gift, would Down Syndrome have more of a focus for us? I don’t know, but maybe. I can’t imagine going through what we have with Sam, while also feeling like we had to convince people Sam’s life is a gift. My heart hurts just thinking about it.
I am so thankful we had the experience we did, but my heart aches for those who will receive a message that says their child’s life is not a gift. Can you imagine how you would feel if someone made you think your child’s life was not worth living?
It’s 2…0…1…8! The fact that Down Syndrome is still presented in a bias and hopeless way, boggles my mind. I have yet to meet a family who loves their child less because of his/her diagnosis. If anything, that child has taught them to love deeper and more passionately than they ever have before.
I tear up when I think of how many lives have already been touched by Sam. And he’s only two! All of my hopes and dreams are not over for my child. They are just beginning. Every tiny hurdle he makes is a hope and dream we have for him that has been fulfilled. In all reality, he has already surpassed any hope and dream we ever had for him. He brings so much joy into our life and so many others. One smile from Sam and your heart is full. Our Sam has inspired me to do things I never imagined I would. All of our hearts are bigger because of him.