I don’t share much anymore to the “public” about medical issues for Joseph.
One- because I feel exceptionally blessed to have the children that I do and I don’t ever want to seem like I am complaining or searching for pity.
Two- because I don’t want Joseph to be defined by the things that hold him back because he is so much more than that. I don’t want people to look at him and only remember what they saw on social media about him being sick.
And three- because its hard to keep up with. Once you release the information then you need to update and make sure that everyone knows the most recent events going on. And also because it’s the deepest most raw piece art of your heart&soul and that’s hard to share.
About a year ago it became very overwhelming to me and I stopped sharing many of our battles behind the scenes. But the truth is, there is so much more than what is seen on social media. In order to be real sometimes we have to share the things that hurt us as well as those happy, wonderful moments that we often see. And most importantly, in order for Joseph to have the love and prayers he needs, then we need to ask for them and share his story.
It’s time I own our story. This is our life. This is our reality. This is OUR beautiful, crazy, hard, rewarding, challenging, blessed life.
My last post about Joseph was when we had to stop breastfeeding because he was reacting to my breastmilk despite many elimination diets, he was “failure to gain weight”. Much has happened since then. He tried and failed 14 different formulas over the course or several months. Thankfully I continued to pump milk a few times a day and was planning on donating it. However, a few months into all the formula trials... we knew the formula was causing more issues and he needed breastmilk again. So we went back to pumping and feeding. I had to strictly limit my diet again, I pumped around the clock for several months every two hours (day and night), I power-pumped once a day and worked with a lactation consultant to get my supply back. He is over 20 months old now and we are still going. I can’t make much but I do my best and we thankfully have a formula that he can tolerate in small amounts.
Joseph has been “failure to gain weight” for a year now. He has a hard time holding onto the weight he will gain. He gains, looses, gains and plateaus. We tried to believe he was small or this was being blown out of proportion but the reality is, he won’t eat. He still only takes 3-4 oz/bottle and only takes 2-4 bottles a day. He barely takes any table food at all.
Since the end of August 2017 he’s seen GI, rheumatology, pulmonology, infectious disease, allergy/immunology, behavior therapy, ENT, nutritionist, occupational therapy, had an endoscopy with intubation, two different swallow studies, two stomach emptying scans in two different ways, countless blood draws, an EKG, and Echo, multiple chest X-rays, ear infections, pneumonia twice, “reactive airway disease” (misdiagnosed), upper respiratory issues, chronic fevers everyday of at least 100.4 or more and just this week- a ruptured ear drum. A Revolving door of doctors guessing and throwing new labels at him. Telling us “this is beyond my scope”, “we’ve never seen this before” or “this isn’t under my umbrella... why don’t you go to this other doctor or try XYZ”.
Zero help. Zero. Passing him around like a dodge ball.
On September 7th we received a piece of his puzzle. He was diagnosed with gastroparesis. This means his stomach does not empty as it should. The nerves are not contracting the muscles to empty the food so he stays full, rarely ever hungry and he doesn’t want to eat. We were told this happens sometimes when a baby is sick and he will get better but a later scan revealed he isn’t better. So now we’ve been told that sometimes people don’t outgrow gastroparesis and his stomach muscles are paralyzed. He also has delayed swallow muscles and this could be part of a bigger issue we are investigating. So our problem is we want him to eat more and be nourished but the more he eats, the worse he feels. This is why he couldn’t tolerate most formulas because they were too thick for him to digest. It is very heart breaking. Painful to want your son to eat and grow but by asking him and persuading him to eat, you know he won’t feel well. He associates food with pain. We have tried medication and dietary changes and nothing has helped like we hoped. Our local GI has referred us to a new doctor in Boston and we go on Monday 1/29 to Boston children’s and hope and pray they are Joseph’s saving grace.
For us, life as a parent of a chronically ill child means figuring out how to make him as comfortable and healthy as possible. It means searching the internet day and night for answers. It means over 20 months of never sleeping longer then an hour and a half and most of the time it’s much shorter than that. It means waking up and praying to God to give you strength to be the best parent that day and not allow the stress or heartache to be noticed. It means forgiving yourself for all the mistakes you’ll make due to being chronically sleep deprived. It means making a variety of healthy foods and different textures for breakfast, begging Joseph to eat it and watching him struggle. It means offering all different kinds of plates/bowls/silverware and techniques to eat with. It means using four different high chairs, training his sister to encourage his eating and cheer when he takes a bite and actually swallows it. It means feeding therapy in our home every week. It means watching him take 2-3 bites 99% of the time and allowing him to be done and wishing it were more. It means doing this all over again for lunch and dinner. It means he is often pale and on some days he is tints pf green because the part of his body he needs to nourish him, isn’t working. It means being paranoid anywhere you go because he has low immunities and you worry about every germ, sneeze or sniffle. It means being stronger then the fear. It means rocking him for hours and hours before bed trying to bring him comfort. It means he is uncomfortable most of the evenings because the food in his stomach is creating pain and discomfort, gas and bloating. It means letting him get out of the rocking chair you just spent an hour or two in because he cannot settle and he would rather play to take his mind off it. It means praying for patience and understanding. It means holding him all night long, every night. It means hearing him cry out “mama hurt” while holding his stomach and there’s nothing we can do about it except hold him. It means waking up to the sweetest kisses as a way to say “thank you, we made it through another night.” It means many friendships go untended to or change so much that they disappear. It means being misunderstood. It means often feeling isolated or alone. It means it’s constant. It’s nonstop. When you take a moment to let a tear fall down your face, it’s time to wipe it because he needs you again. It means you worry and your family worries and you worry about your family worrying. It means you hand that worry to God. You get down on your knees. You hold a strong line of faith that this will all work out. It means his success’ and milestones sometimes look different from other kids his age. It means car rides are very challenging as he feels sick and uncomfortable. It means living off of one income from his hard working, unstoppable, amazing father. It means putting my career dreams on hold- or better yet, reshaping them and the path to get there. It means leaving dirty dishes or laundry behind. It means feeling aggravated because there is little or no time for any chores or alone time most nights. It means his big sister (who’s only 3) doesn’t always get the time she deserves and often puts her needs to the side so that he can be taken care of. It means asking for help, admitting that we cannot do it alone. It also means that the “best” of us is not that great some days. It means that even though you’re overwhelmed, you buy him a puppy because it makes him smile. It means going to every specialist under the sun and still searching for help. It means traveling as far as we need to get the help he deserves. It means thousands of dollars in medical bills and expenses. It means power-housing through so often that you forget to feel or process until one day you realize you’ve become more machine then human and need to take a moment to reconnect. It means being thankful everyday that things aren’t worse and clinging to that thought for survival. It means reminding ourselves that we need to cherish every moment.
It means fighting. Fighting for health, for happiness, for his life. It means we will never give up. It means we will become experts in his condition and try new and innovative methods for our son. It means breaking all parenting rules we once had. It means being his advocate, his sword, his shield and also his soft place to land. It means we are thankful he is ours and feel blessed we can do this for him. It means finding your tribe, your team. Finding the diamonds in the rough that will fight for and love your son-People like his pediatrician, feeding therapist and nutritionist-People like our families and closest friends that have stuck through this with us. Those that know it isn’t easy and we can’t necessarily be there for them but and they are here for us, they love us through the storm. It means finding strength in yourself and your spouse you didn’t know you had. It means watching your sweet son laugh, smile and blow kisses at almost everyone he meets. It means over celebrating the good moments and really soaking them in. It means watching him in those rare moments of peaceful sleep and wondering who he would be without all the pain and complications. It means that we will have that answer someday. We won’t stop. Joseph deserves our fight. He is here, he is brilliant, he is resilient, he is strong, brave and he is teaching us the important things in life everyday.
He is so much more then this. He loves to sing and dance. Loves anything that’s mechanical, is obsessed with trucks and tractors. He smiles and waves at almost everyone we walk past in public. He cuddles and kisses and is such a love. He’s silly and social. He adores his sister and she can make him laugh like no one else. His favorite game is “raaaar” where he chases people with his “raar hands” and we yell and run. He climbs on everything and constantly gets himself into things he shouldn’t, he’s mischievous yet so innocent. His is the most handsome little boy. And although he may be “tiny”, he has the biggest heart of any child I’ve ever met. He truly greets with love and lets it guide all of his interactions. It means we learn from him, his reliance and his strength every damn day.
We live off of our faith in God, our love and determination for Joseph to have the very best, most fulfilling and healthy life.
We ask for prayers during this next journey because we don’t know what comes next. We ask for guidance from our Lord. We ask for comfort, answers and solutions.
This is our story. Thank you for reading and allowing me to share it with you.
Please Pray 🙏🏼.
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