I can proudly say that I am a Heart Mom and the Mom of a Special Needs child - but ultimately I am the Mom of a very special girl who has taught me more about life in her first year than most people learn in a lifetime. Every day with her is truly a gift from God. But if I had the chance to go back and tell myself some things to help me prepare for what we were about to encounter these are the top ten things that I would share:
1. You will lose friends - Becoming a parent can sometimes alienate you from your friends who don't have kids yet but becoming a Special Needs Parent will also alienate you from even more people. Being a parent is a full-time job but adding in health complications makes it like two full-time jobs with overtime. There are many days that are just overwhelming and exhausting that it is hard to find extra time for friends. There are also some friends who won't know what to say about your situation or don't know how they can be there for you. Looking at my phone contacts - over half of them are now doctors or other health providers. Five of the top 10 most frequent contacts that show up are also doctors - a big adjustment from what my phone usage looked like before.
2. You will gain friends - 1 out of 100 children are born with a heart defect, it is the most common birth defect and there are many families that are going through a similar situation. Heart Moms have a bond that is inexplicable because we have all experienced that moment when we thought we were going to lose our child and we understand that friendships are very important to each of us but they can not be our top priority.Spending over 3 months in the hospital and countless days at doctors appointments we have also had the privilege to befriend many of the people who have helped in providing Stella with her medical needs. From nurses, to respiratory therapists, to nurse practitioners, to doctors...we have had many new faces who entered our lives during a tragic situation and have stuck around because of the relationship and trust that we built up with each other.
3. You will learn how to function with little to no sleep. This sounds like a common thing for new parents but I'm not talking about the waking up every 2-3 hours to feed an infant who will fall back asleep and take naps during the day. With Stella we did not sleep for an actual full night until after her 1st birthday. As a heart mom you spend many nights sleeping in a hospital room on a chair (or if you're lucky a small, hard "couch") with machines beeping throughout the night, nurses checking in every hour and commotion happening right outside of your room all throughout the night. If you're not sleeping in the hospital room (when Stella was at PCH for her 2nd open heart surgery we had the chance to stay at the Ronald McDonald House on campus for part of her stay) then you are getting woken up throughout the night by phone calls from doctors. While your child is in the hospital it's not only the harsh conditions that make it impossible to sleep but the few calm moments when you actually could sleep are interrupted by the worried thoughts of being the mom of a child in the hospital. When we were home we did have the comforts of our own bed but we also had machines at home that beeped throughout the night. At one point we had the feeding machine that had to be attended to every 4 hours (with wonderful "false alarms" between), a pulse oximeter with many "false alarms" throughout the night and medications that had to be administered every 2 hours.
4. As a heart mom you have to live with the fact that you could lose your child. I know that this statement could be true for any parent because accidents happen and an unforeseen tragedy could occur that could possibly result in the death of your child. When your child has CHD it is not an unforeseen tragedy...it is a very high probability involving open-heart surgeries and a life-long health condition that could take a turn for the worse any day.
I remember a specific moment when David and I were driving home from Phoenix Children's Hospital to pick up a few things from our house because we hadn't been home in over a month and we needed more clothes, etc. Stella was still in the hospital in the CVICU and she was in pretty critical condition. On the way home I started to think about the "what ifs" and it was an awful daydream/nightmare. I had to wonder what it would be like if we had to drive home from the hospital without Stella and how it would even be possible for us to drive home knowing that we would never be able to bring Stella home. What would we do with her beautiful room that she had not even slept in yet...how could I ever bring myself to even walk into my house with baby girl stuff, Stella's stuff, all over the place. It was a horrible, unimaginable thought but it was an actual possibility. Thank God that we were able to bring Stella home where she belongs a little over one month later.
5. As the parent of a heart child you also end up living somewhat in fear. You can't keep your child in a bubble but you almost want to. Stella's immune system has been compromised because of her health condition and her time in the hospital and if she were to get even some common illnesses they could be really detrimental to her health and her heart function. You have to learn all of your child's "normals" (which are not even remotely the same from one child to the next) when it comes to her breathing, her heart-rate, her oxygen saturation, her coloring, her overall demeanor and personality, and her normal activity. You really have to learn how to read every move your child makes and recognize any changes because they could be a sign of a heart problem.
6. As a heart mom you have to learn how to live day by day and sometimes even hour by hour. "You time" is a very rare commodity and your schedule has to be extremely flexible because it could change at any moment. When you go to bed at night you don't know exactly what tomorrow will bring. Your social calendar will revolve around doctors appointments, vaccinations, physical therapy, speech therapy, occupational therapy and play therapy.
7. You will quickly learn that you are the ultimate advocate for your child and you will know her medical history like the back of your hand. You will see multiple doctors in the same field to find the one that fits best with your child and you won't settle for anything mediocre. We are very fortunate to have a group of great doctors for Stella and I firmly believe that each one of them has her best interest in mind. However; we see over 7 different specialists and I am the one who is ultimately responsible for knowing the details about Stella in each area. The doctors work in one specific area and they are not able to all meet together and collaborate about Stella's total care (that's where I come in!)
8. Being a heart mom changes your perspective on having kids. Stella is our firstborn and we do plan on having more kids in the future but there was a time right after Stella was born that I can honestly say we were scared to even think about having more kids. We have finally gotten into more of a "routine" and things have definitely calmed down so we can honestly say that we do want more kids. The reality of having a child (or parent) with CHD is that there is a 3% higher chance that your future kids will have CHD. So instead of a 1 in 100 chance that our next kid would be born with a CHD it is a 3 in 100 chance...it's still pretty slim but it's greater than it should be. I am very thankful that Stella was our firstborn because I couldn't imagine going through her surgeries with other children at home...how would we split our time, how would we give Stella the attention that she needed and make sure that our other kids were not being neglected?
9. As a heart mom you will have to hand your child over to strangers and trust that they will take care of her. I can remember walking Stella in her hospital bed to her first open heart surgery...we went to the surgical floor but we could not enter the door into the unit. We had to say goodbye to our baby and watch as 4 strangers wheeled her away and prepped her for one of the most invasive surgeries you can undergo. It was extremely difficult to hand her over but having the procedure was her only chance at life.
There were many times when we had to walk away from Stella as a medical professional took over to perform a procedure. It never gets easier! I think this is one of the reasons that David and I both had a hard time three weeks ago when we finally decided we should let 22 month old Stella go to the nursery at church. Aside from medical professionals and family members, Stella had never been in the care of anybody besides us. Now we were trusting total strangers to take care of our baby in a situation that wasn't even medically necessary. Stella did great and loved playing with other kids but it was one of the hardest things the first time we walked away from her to go to our church service.
10. The last thing I have to say about being a heart mom is that with everything else going on you have to trust God! It is so easy to get caught up in the schedule, the lack of sleep, the fear, or even the anger and the only way that makes the journey bearable is to put your trust in God. You have to trust that He has a great plan for you and for your child, and probably the hardest part, you have to trust that His plan is actually the best plan. I am so grateful that God has trusted me to take care of His child (because ultimately Stella is His not mine) and I am going to do the best I can as long as He will let me.
I know this was a crazy long post but I will leave you with this video because it melts my heart every time that Stella says "mama" and although being a "heart mom" is hard it is 100% worth it!
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