Raising a medically fragile child is hard.

Sometimes it’s hard not to wonder how things would be if Liam didn’t have all of these medical issues. If he didn’t have speech twice a week. If he didn’t have to have all these surgeries. If we didn’t have to have all the appointments with different specialists. Wondering what it’s like being able to schedule playdates without having to worry about the next appointment, surgery or speech therapy session. Having your child see doctors and therapist more than friends and family.

From the day Liam was born we were feeding him differently than you would feed a typical child. We had to buy all these special cleft bottles that didn’t require suction. Literally a hour after he was born his surgeon was in our room teaching us how to feed and how to tape his face. Can you imagine being completely drugged up after an emergency c-section and having to try to learn all this? When you should be spending time with your new baby, doing skin to skin, cuddling, etc.

We had to feed him in a certain position. We had to teach family how to feed him. We had to tape his face daily. We had to put his NAM in and out daily. No one knew how to do these things, we didn’t even know at first. We had to learn and it took time. There were days I wanted to quit taping and the NAM. It was mentally draining on my husband and I. It was traumatic. We didn’t leave Liam with anyone for months because “what if his NAM fell out or his tape came off?” or “what if they don’t know how to actually feed him the way he needs it?

All the back and fourth driving to the surgeon, 2 hours there and 2 hours back – every Friday. The long waits in the waiting room during surgeries. I’m talking 8 hours of waiting while your baby is being operated on in a cold operating room. The medicine schedules – waking up at all hours of the night because he can’t miss a dose of pain meds. The sleepless nights in the hospital or even at home. The hunger strikes, even to this day at almost 2 years old.

Cleft lip and palate come with so many hurtles and struggles but to throw other medical issues on top of that is even more challenging. There’s been more days that I can count where I have just sat and cried, asking “why? why our baby?” It’s truly unfair. There’s been days I honestly didn’t think I would get through but knew somehow I had to.

Holding and comforting him through the pain and tears. Watching all these nurses give IV after IV, pushing morphine through it, checking vitals, etc. Fighting and fighting to get answers for your child. Not giving up when your told “we’ve never seen this before” from a doctor. Advocating for your child in the hospital. Trying to explain the best and easiest way possible to family/friends his “diagnoses”. Scheduling test after test for him, praying for any kind of answers.

It’s sad when your child cries and fights when walking towards the car because he’s afraid we are driving 2 hours to the doctors again – which usually he’s right, we are. Or when I tell him we are going to MUSC or Charleston he instantly points to his mouth and ears. Or when the nurses and doctors from the hospital recognize him each time we are hospitalized, even the housekeeping ladies. I’ve even had them add me on Facebook just to keep up with Liam’s health.

Being absolutely terrified to leave him with someone else. Not only because I’m sad to leave him but because what if something happens when I’m gone? What if he chokes again? What if he stops breathing again? What if he falls and hits his repaired lip? What if he throws up again?

It’s not being overprotective because I am a mom. It’s being over protective because he’s medically fragile. He has things going on that no one else knows about or understands. No one knows how to handle it other than my husband and I. Even sometimes my husband struggles because he works fulltime and isn’t home all the time to experience and handle these things.

All medical parents have different stories and journeys. But we do have one thing in common.. we are all trying to do our best. We are trying to be strong for our children. We are trying to hide the fear of missing something or doing something wrong. We are trying to be mentally strong and present. We are trying to do what’s best for our child all while being financially stable for their needs.

We are trying to get through our journey, one step at a time. One doctor’s appointment at a time. One surgery at a time.

Being a medical parent is hard. It’s exhausting, it’s heartbreaking, it’s mentally draining. We didn’t choose this life. We don’t want the sympathy – we just need the support and strength.

We are trying our best.

*No matter what your journey is, no matter how different it is from the next medical family. I am here for you. I am praying for you, your child and your family. Stay strong.

One thought on “Raising a medically fragile child is hard.

  1. My son is 17 and had final surgery in August. We waited 7 years to have another child because we we scared and because we knew it would be hard going thru all of the doctor appointments with another child in tow. And we had to drive 7 hours each way (14 total) for doctor appointments. Anyway, hang in there. It will all be worth it in the long run. The advances in treatment already are amazing We didn’t have a nam for my son. Would have been awesome if we did!! No one I know personally has had to deal with a cleft so it is very isolating. Friends are important for you and Liam to grow and feel normal. And by all accounts he is a normal child he just has some hurdles along the way. He will be a much stronger kid and adult for all he had been thru. Hang in there. And be thankful you are able to provide Liam with the best medical help There are so many that are not able or don’t care as much as you Feel free to reach out if you ever need/want

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