Saying YES to Medical Special Needs

by Guest Writer Alyssa   

 We were a Family of 7.  We were enjoying life with our two biological and three adopted kiddos. We were in a really good groove with life, school, sports, and family time. We had given up our foster care license the year prior; helping more kids was never really off the radar but we thought things were just so good, why upset the apple cart?  Then we got the call that forever changed our family.

Our sweet friend Stephanie had helped with our previous three adoptions and was now with a private therapeutic placing agency. We kept in touch over the years and she called one afternoon to ask if foster care was still on our hearts.  I told her it always would be, but we were in a good place. She asked if we would be open to hearing about a little boy. I told her this was not good timing for us but she continued to press over the weeks ahead saying she just wanted us to be open to hearing about him, his story, and why he needed us.

I truly thought she had lost her mind when she told us he had very high medical needs and that he was currently living in a hospital over an hour from our home. We already had adopted one child with an intellectual disability and a very rare syndrome so we already had a peek into what the special needs world looked like.  To say we were scared to even think about opening this door was an understatement.   Stephanie came over one night after weeks of back and forth on the phone about this tiny little boy.  She brought my husband Jamie and I a picture, and a tote full of information on him. She looked at both of us and said, “I just want you to meet him. I need you to meet him. I’ve got a lot of people to get on board with this idea of having him come to you and Jamie, but this is where he needs to be.”

We ate dinner and chatted for a good few hours and after we decided we would reinstate our foster care licenses so we could at least meet this little boy. We did not tell a soul, not any friends, family, or our 5 kids. We needed to see if we could truly do this. Over the coming weeks, we learned the little boy's name was Kahmari, he had been born with Gastroschisis (his bowels on the outside of his body).  He now had short gut syndrome, was being tube fed around the clock, did not eat by mouth,  and had a central line going into his chest. We were told he may be in organ failure, he may never be able to go to school, and he may not survive long term. He had been abandoned by his birth parents at a hospital after they realized they could not care for him, so I thought to myself, How the heck are we are going to do this??? How can we meet this little boy, and then maybe have to walk away? How can we bring him home to our five other kids??? How where we going to tell our extended family who already thought we where insane for having 5 kids?

We cried for this little boy before we even met him; we prayed, we stayed up all hours of the night talking about him.  After months of waiting on our licenses and background check re-approvals came back, we got word on July 9th, 2013, that we could go see Kahmari at the hospital.  It took us almost two hours to make the trip to see him.

Once we arrived at the hospital I thought I would be sick in the lobby.  Were we really going to do this??? Had we lost our minds??? As we made our way to the floor he was on, we were greeted by multiple nurses asking if we were their to meet “Their boy Kahmari.” I very nervously told them yes.

We walked into his little hospital room, escorted by Stephanie,  fully gowned up in hospital gear, and masks, and then tears just started rolling down my cheeks the moment I laid eyes on him.  All I could do was hope he did not see them behind my mask.

He looked right up at us with his pudgy little face while watching Dora the Explorer and exclaimed, “Hi, guys I’ve been waiting all day for you to get here!”

It was if he knew, and in that moment I even forgot that we where standing in a hospital room and that he had multiple apparatuses hanging off his tiny, round body.  I remember looking over at my husband Jamie and saying, "You have to go home and get my bags, I’m not leaving him here one more night alone.”

And that was it.  We had know idea what we were getting ourselves into, how much sleep in the coming weeks that would be lost, how we where going to tell our other kids, family, or friends, or how chaotic it was about to get. We went home after spending a few hours with him watching TV, playing games, and chatting:  we needed to pack bags and talk to our kids.  As soon as we got back home and told them, their first words were, “How soon can we meet him?” The very next morning we headed back to the hospital for the kids to meet him (they hit it off immediately), and for me to start training on all his care. 

After a solid 8 days of being trained on G-tube feedings, central line trainings, and on the over all care of Kahmari, we were discharged for home with 16 hours a day of nursing care. As it was summer time, mid-July,  I thought this would be the perfect season to get us all adjusted before school starts.  Kahmari had over 30 types of meds to be administered four times a day, a formula mixture to make and he was going to need feeding therapy and PT.

Kahmari had spent so much time in bed he did not know how to do normal things like other kids. After a month at home with nursing care, I seriously thought I was going to lose my mind.  We had nurses coming and going at all hours of the day and night:  they would fall asleep on the job and one told me she had to pump breast milk for her child at home and stood in our kitchen in front of the other kids without warning to do so. We had another new nurse show up for her night shift, see our tiny toy poodle at the front door, and went running down the side walk.  When my husband finally caught up to her to ask her what was wrong she exclaimed, “I don’t do homes with beasts!”

That was the icing on the cake.  We asked a friend (who was also a school nurse in our town) to come help out on weekends, but I finally decided we needed to take over ALL his care. I had to figure out how Jamie and I could conquer and divide all his stuff, so Jamie took on his feeds, feeding pump, and making his formula.  I took on all his medications--making them, giving them--potty training, dealing with all the doctors, and trying to figure our how to get him into preschool.

After about 2 weeks of us doing all of his care, it just worked. We found a new groove, and we could leave the house with him to go out in public.  Things where starting to fall into place.  I was know longer in constant tears and panic that we where going to kill him and now had to find a preschool for him to go to. Of course, in the middle of all this we decided to build a house because we are totally insane.  (We needed more land for the kids and on all our pets.)  On a whim I decided to give the school in our new school zone a call in the middle of August to see if there was any way they would be able to take Kahmari into their four year old preschool program.  When I made the call they said to bring him for a meet and greet.  

The school opened their hearts to Kahmari and our entire family.  Multiple doctors had said he would never be able to attend a regular school.  Of course, off to school he went!  He's now in 2nd grade in a general education classroom setting and he's doing it.  He's doing school!  He still needs multiple bathroom breaks and bolus feedings at school, but our boy is doing something he was told may never happen!

    I can’t tell you that there have not been days where I banged my head against the wall, days that I still cry, or I go out on our deck and scream at the sky.  But we are now coming up on Kahmari’s 3 year adoption anniversary in November, and I am here to say that its been worth it to take that leap, and have a bit of faith:  its all been totally worth it.

If you’re on the fence about a medical or special needs child via adoption, I am here to tell you it will be hard, it will turn your world upside down, but the love, the crazy, is all worth it. It does get easier--we have found our village, our people, our tribe--and at the end of the day, I can’t imagine him not being a part of our family.  

 I’m so glad we disrupted our groove to bring him into our family, that we said “YES” to a medical kiddo.  He was truly a missing puzzle piece I had know idea that we where missing.