Eighteen years ago, I was counting down the days to May 24^th. This was our upcoming wedding day. I know at some point I would become a mother as I wanted children. I loved children and had always worked with children in some way. What I did not know then is that by this point in my life that four of the children would be medical needs children, or that I would deal with a body wearing our earlier than normal as well. What I did know is that I would become a mother and do the best I could.

What have I learned from my experiences as a medical needs mother? Well, like any other mother we get excited, make plans for our kids, learn to adjust, and keep plugging on through a lack of sleep and total exhaustion.

Emily Kingsley’s poem Welcome to Holland is commonly used within the special/medical needs communities as parents try to help others “walk in their shoes” as one could say. Sometimes we expect and welcome in a child that is not born perfect. Other times we do not expects, but still welcome that child. Then sometimes, these children are neither expected nor welcomed.

This poem relates life as if one is preparing for and taking a trip. As a medical needs family, with each additional child, we have had to adapt in a new way. Yes, this is kind of like learning another language for the next flight. The things my children have taught me, I could not have learned without them.

                Our oldest was early in all her milestones. I had the joy of watching her grow and develop. Our second child needed lots of help and intervention to become the amazing child she is today, yet is as brilliant as her older sister. Even if she prefers to hide this brilliance. Child number three continues to battle against his body with is platelets. Then we add mischievous personality child four into the mix and he keeps us on our toes. Bringing child five near the end, even as a baby, he has always been our Mr. Attitude, and making sure everyone gets what they need to accomplish their goals and tasks. Finally, but not least we have child six. This little one sure loves keeping everyone on their toes. She lights up the room with her smiles and makes sure everyone around her is smiling.

                Our first child Celidah, was a very energetic little red headed bundle of joy. Not only was she very energetic but brilliant and met all her milestones early. She was brilliant enough that we had friends telling us we needed to give a head start and teach her as an infant through “special” flashcards that would have her reading and doing complex math by the time she was eighteen months. After watching how the learning style worked and the time involved, we decided this was not right for us.

Instead, I created cut out alphabet letters, laminated them, and placed them where she had access to see them daily. She had access to blocks, magnets, and many other learning toys to encourage her creative side and academic as she was ready. This process worked for her as she was asking for help learning to read just before her 3^rd birthday and sounding out simple words. Not long after, she took off and developed a love for reading which she still has today. Would she have the same love for school and reading with the flashcard method? Maybe? Yet, that was not my style.

Our next child Jade, was my first real challenge. She was totally the opposite of her sister. She met all her milestones late. Many were very delayed. In time I would learn to accept that each child will be different and sometimes very different. These milestones were delayed enough that intense early intervention would be required to help her out. We would learn that this child too was brilliant, she just needed help finding a way to understand her potential and learning style. Later, we learned that she was autistic and would need more intensive therapies than she had been receiving up to that point.

Like her sister, she too had access to the same educational toys and creative tools. She needed help communicating her needs, wants, and desires. To begin with lots of pictures were used within the house to show what was needed and expected. In time, we realized that the household rules needed to be adjusted. Why? I realized we had to have only one set of rules. I did not want one rule for my oldest daughter “you have to the good girl because nothing is wrong with you” and another for my younger daughter that told her, “you are disabled and have a lower standard to meet.” Instead, we re-aligned the rules for the kids that would allow all to follow.

Other than food allergies our third was fine until November 2007, when his body decided it was time to go haywire and attack his platelets. At first we were told to take him home and keep an eye on him because a spontaneous drop in platelets like he had would rise like it did in 99% of children facing the same thing. Two weeks later at a follow up, his platelets still had not gone up any, he was still sitting at 1,000. The normal is 400,000-500,000. With no rise, he was put on prednisone (steroids) and a referred to the hematologist. Again no rise, steroid level increased, appointment bumped up, IVIg treatments started. To date our son Corbyn, has had hundreds, of IV’s, and blood work pokes, IVIg infusions, many meds he did not respond to. Yet he keeps plugging on.

Our fourth son Jairon, joined our family with spunky and mischievous personality. He truly took after his Poppy with this, looks and personality wise. They are totally two peas in a pod. This munchkin was active but healthy (only had asthma). Most important to Jairon was to be involved in whatever his brothers and sisters were up to. He also loves making those around him smile.

Next came child five. When preparing for Zach we were not prepared for anything. We knew the pregnancy was high risk and there was a potential for problems, and the delivery did not go as planned. The delivery was filled with many complications, but things seemed to be okay after birth. This proved to not be the case. His lungs were born without the surfactant needed to lubricate his lungs. Without the lubrication, every time he exhaled, his lungs became stuck a bit more than before. In addition to that, the hospital he was born at, did not make the call to transport him for 36 hours. Due to this, the timeline for injecting the artificial surfactant into his lungs was borderline. Would this process work when he arrived to the NICU?

Later he was discovered to have a congenital heart disorder, a VSD. We did not know if his heart would require open heart surgery or not. He also was spitting up really bad and burning to many calories. This too would require a surgery. At that point they decided to put off the heart surgery to see if his heart would heal on its own, do a nisson fundoplication, and place a feeding tube for easier feeding and increased calories. During this surgery they discovered he had a hernia that needed repaired ASAP, so that was scheduled for the week after his feeding tube post op appointment. Right after that surgery he went right back into the OR for tubes in his ears because he kept getting really bad ear infections.

Somewhere around this time we realized his heart was healing despite the recurring surgeries. The next surgery he would have would be to remove a quarter he had swallowed. Due to his nissen, the quarter had to be removed because it could not pass through the esophagus. His next big surgery was to have a hemangioma removed that was attached to the main artery leading into his heart.

Due to his “many” surgeries, feeding pump, and “tons” of medical supplies, we had decided that if we would have another child, we were going to wait until all of Zach’s medical supplies were gone and out of the house. This was far from the Lord’s plan for us.

Right after delivering Zach, I was given a blessing. This blessing let me know that my family was not complete and the Lord would let me know our family would be complete. I think most hearing this in a blessing would be comforted. Me, I was not. At that point in my life I was terrified. Before Zach I had lost a baby, and the delivery was filled with complications. Zach’s pregnancy and labor was filled with complications. Not to mention at that point I was not even sure I wanted anymore, but had been haunted in the past by conceiving through birth control.

The day I found I was pregnant with our sixth child was a bad day. I was very sick with pneumonia and the meds to treat it best would terminate a pregnancy, could not be given if the test came back positive. Yeah, my test was positive. The kids were their gymnastics class, my husband in the field, and a very good friend with me (thank goodness). In the end this pregnancy was complicated, but not the worst. Labor was much easier than Zach’s.

Again like with Zach, everything looked great right after birth. Within a few minutes it was clear this was not going to be the case. At first Ellie was taken to the NICU to be placed on oxygen, an antibiotic, and watched. Within the first hour she started to take her first downhill turn. Before long she needed to be intubated, then suddenly she was on full life support. The next thing I knew they were talking taking her off the ventilator and putting her on ECMO to help her lungs because she had such fragile lungs.

There were tubes, wires, alarms, IV’s, pumps, all over her. However, eventually she came home, and added to Zach’s medical supplies. He had a feeding pump. She brought a feeding pump too. She also had a pulse-ox, apnea monitor, and oxygen. These had to run 24/7. Eventually we slowly removed machines here and there until she is now currently down to 2 feeding pumps and her GJ feeding tube.